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Mommy's Journal
April 28, 2008

Week 6 – How did we ever do this for 8 months???   I am worn out!  It feels like we have something scheduled every minute of every day… especially now that Alexis and Zach are in the middle of Softball and Tball season (AND Trent is coaching Zach’s TBall).

My dad came last week and kept everyone and he even did laundry!!!  He is so awesome.

My mom came for this week and I am so happy!!! 

Zane – I am now in the room with him actually feeding him.  It is so much fun to be able to feed your own kid and not through a tube.  (Even Alexis fed him this weekend.)  This week we are working on him taking a variety of foods AND a drink.  Which brings me to a request… I need honey bears without the honey.  We put the milk and a straw in the honey bear.  Then when he puts his mouth on the straw, we squeeze.  I guess someday he will figure out he likes it and he will suck it up himself.   ??? 

Trach pulling is scheduled for June 16th AFTER our vacation this year.  We will see if this helps.

Pam

PS – THANK you Sherry, Stacy, Dana and Angie for all the days you volunteered and kept Alexis and Zach after school for these past few weeks!!!



April 15,2008

I think Zane has turned a corner!!!  He is now eating at every session with fewer and fewer stand offs. 

He was eating about 5-10 grams of soup.  Yesterday and today he went from 19 to 30 to 50 grams.  They are stepping it up each time and he is doing great!!  I FINALLY get to go into the room tomorrow.   I am pretty excited about learning all that I can so that we can continue it at home.  I believe we will have 2 more weeks after this one.

Zachy had a great time at Grandma and Grandpa’s with Dakota.  He did not miss us at all.  I am so happy to have him home, and my house is back to being loud and crazy.  Today Zachy went with us to the hospital because I couldn’t bear to send him off after he just got home.  Tomorrow he is staying with the Dimson’s from our small group.  (THANK YOU, DANA!!!  I don’t know if the hospital can handle another day of Zach.)   My Dad is coming in for the next week’s duties.

THANK YOU, Sherry and Stacy, for picking up Alexis and keeping her the last couple of weeks!!!  I have such great friends!!!

Pam




April 4,2008


Zane had an up and down week.

He has 6 sessions per day that last about 30 minutes each.    There is a Speech therapist (ST), Occupational therapist (OT), and a Neuropsychologist (N) that all work with him every day.  We leave the house at 7:30am and get home a little after 4:00pm.  Then he has Physical therapy twice a week and home bound school for 2 hours a week once we get home.  This kid is on a major schedule.

During his first session, the ST and he have a standoff because he does NOT want to cooperate.  But the next session with OT, he seems to oblige.   Basically as long as he will do what they ask him to do, he can watch Blues Clues or Wiggles, play with toys, or look at books.  THE MINUTE he stops, everything goes away.  (They even closed the blinds yesterday so he couldn’t look outside.) 

This week they asked him to put a dry spoon in his mouth and close his lips around it.  His tongue has to be in the correct place, etc.   Then they dipped it in cheese soup and he had to do the same thing OR he had to repeat it until he did it correctly.  The end of the week they got to a little scoop of food on the spoon.

He does a dry spoon great!!  Now we have to get him to do the dipped spoon more consistently and so on.

I guess everyone knows that Zane has never really eaten anything by mouth.  He has always been fed by a tube.  It is funny but I am so use to it that when I fed a baby with a bottle the other day, I thought “good grief, this takes forever!”.

My mom is going home tomorrow and I am so sad.  She was such a big help picking up kids and keeping my kids and several other kids too!!!  LAUNDRY LAUNDRY LAUNDRY   I have not done one load of laundry since she has been here.  OH MAN THAT IS A CHORE IN MY HOUSE!!!

Talley is taking Zachy to Grandma and Grandpa’s with Dakota (Trent’s parents) in Abilene Tuesday and Grandma will bring him back the following Tuesday.  THEN the following week my dad is taking Zachy duty.  THANK YOU THANK YOU!!!

Pam



March 27, 2008

Zane is doing AWESOME!!! 

They are putting a spoon in his mouth. AND today they got him to close his lips around the spoon.  I couldn’t believe it.    HE has NO control over the spoon at all AND he opens his mouth for it.  Yesterday they dipped the spoon in Potato soup.  They said he would wipe off his tongue with his hands but then he would actually do it again.  

He is progressing in such a short amount of time.  It is very exciting!!!

Pam




March 24, 2008

Hello!!

It has been a long time since I have updated everyone so here it the short version. 

In November Zane turned 3 and was able to start the PPCD program at school.

In December Zane was hospitalized for pneumonia again.

Since then no hospital but lots and lots of antibiotics.

Today we are starting a feeding program at Our Children’s House at Baylor.  It is going to be about 4-6 weeks long, 5 days a week, all day.  HOPEFULLY this will get him on the right track to actually eating something. 

My mom is coming for the first two weeks to help with Alexis and Zach while we are there.  After that we will juggle them between Trent’s parents and my dad and all our wonderful friends. 

We will try to pull the trach again this April or May…  WOW it is almost April.

I will update you more after our first day when I learn more.

Pam



March 5, 2008

Hi, everyone. 

I don’t think I was able to tell everyone but Zane is have a couple of procedures done tomorrow.  A Bronc and then they are going to work on his teeth while he is under.

I just remembered Sunday that this was happening tomorrow so sorry for not letting you know earlier.  It is crazy but it seems like no big deal any more.

I have to get to bed because we have to be there at 7am.

Pam



December 9, 2007

I did not send out an email but we had to take Zane to the hospital again with Pneumonia.  It was only in one lung and we only had to stay a week.  I did get to see all the nurses that always take care of us.  They are all so sweet at Children's in Dallas.
Pam



November 8, 2007

Today is Zane’s 3rd birthday.  Can you believe it?  I want to cry every time I think about it.  What a day that was!!!  What a year that was!!! 

Zane Isaac is such a happy kid for all that he has been through.  Smart smart smart !!!  He blows us away just about every day with something else that he does.   He can point out and say all his letters (upper case and lower case), same with his numbers, AND he can even say what letter a word starts with.  He really is incredible.  He is way too smart to eat though.  Seriously, we have not made much progress with eating.  L

Yesterday I enrolled him in Forney School district.  There is a program (PPCD - Preschool Program for Children with Disabilities) that has accepted Zane.  He starts on Monday for half day every day.  It is just like school… he has to wear the uniform, he can be tardy, and has to have a doctor’s note to miss any days.   There are several area’s that they are going to help him in… self help, communication, speech, listening, fine motor, etc…   I am very excited!!!

Please keep Zane in your prayers for the winter.  We will try again with the trach removal in the spring if the winter goes ok.

Pam



June 29, 2007

WE ARE HOME FINALLY!!!  2 weeks is just too long for a hospital visit!!!  The first couple of days were very scary.  It reminded us how fragile Zane still is and how VERY blessed we are to have him.  He is such an awesome kid. 

The bad news is that Zane will (more than likely) have the trach for another year.   GGGGGGRRRR  we worked so hard to get it out.  I know I know… “This might be the best for him”   OK OK maybe I know this in my head but my heart is breaking.  (Warning Warning – Pam’s Pity Party is about to start.)  I was so ready to be a normal family.  I was ready for Zane to be able to go to Sunshine School.  I was so excited that he would get to go do things with us instead of sitting home with the nurse.  I was pumped to really get started on the feeding.  I loved not carrying around a zillion things for the “just in case” situations.      I KNOW I KNOW… I know the common theme is the “I” BUT that is why it is Pam’s Pity Party.   It is over for now.  Thanks for listening!!

The Brown’s brought Alexis and Zach home today.  It was SOOO nice not to have to worry about them through all of this.  (Thank you, B and Mom, Dad and Hilda with Brooke and Michaela, and Brown’s for keeping the kids and driving them to the next location.)  I am so happy they are home!!! 

Thank you everyone that brought us food and took me OUT for food.  Thank you for all the prayers and emails and calls and visits!!!  You people are so good to us!!! 

Pam




June 19, 2007

Terrific News!!!!!

They have moved Zane to another room where he can get some rest.  He is totally off oxygen for the moment.  This can always change because of the nature of the illness.  He is also off the vent! 

They have determined that he does have viral double pneumonia and additionally a bacterial infection in his trachea. He is responding to the meds but still very weak. He is making steady progress.  He also still has a central line and the IV but he is getting better.

The number to the room directly is 214-456-7715. Pam still has her cell off so you can call her and Trent in the room.

Thank you again for all the prayers.



June 17, 2007


Hello!!  
Just to catch everyone up that does not know.
Last Sunday we got home from Florida and we had a great time.  A few of us had colds or allergies or whatever but did not last long.  Zane unfortunately got worse.  Tuesday evening everything turned yellow and Thursday he had a high fever.  Friday, he woke from a nap blue/gray.  Luckily Zane’s therapist and Grandma Brown were here to help me with him.  I was not able to get his oxygen levels back up so I had to call the ambulance.  (Lex and Zach enjoyed the fire truck the most!!) 

 He declined fast after that.  They quickly figured out that it was Pneumonia in both lungs and maybe sepsis (blood infection).  They went ahead and put his trach back in and back on the ventilator.  (YUCK!!!)   That was a long night with the settings of the vent increasing.  Saturday morning they decided to put a bigger trach in and in the process, he coded.  (double YUCK!!!)    They got him stable but still not oxygenating like they wanted.  He is on 80 to 100% oxygen and pretty high settings on the vent.  Last night they switch to a high frequency vent which brought back bad memories of the NICU.  It didn’t work better so we are back to conventional vent.  ANYWAY!!!  We are in the ICU at Children’s and we are hanging in there.  I believe we will be there for a while.  He is completely sedated so he won’t fight the vent. 

My mom and sister are taking the kids to my dad’s and my dad will take them to The Brown's in Abilene in a week or so.  Thank you all for calls, visits, and the prayers.  The number to the room in the icu is 214-456-7215. (We can’t have our cell phones on in the room so that is the best place to reach us.)

Pam
PS-I attached a picture of Zane on the beach.  HAPPY FATHER’S DAY!!!  Little cutie

Zane hating the sand




May 22, 2007

We are home and Zane is trachless.  I don't think it feels real just yet.  It is a little weird.  The hole is not closed and he is still breathing through it.  I am to put a band aid over the hole.   ???

Beach ... Here we come!!!  Is that scary or what???
Pam

May 18, 2007

HEY EVERYONE!!!!!
Zane will have his trach pulled Monday morning at 9am!!!  YEAH!!!  We will be in the hospital at least one night.I am so happy!!!!  Pam

April 25, 2007

Zane had his surgery Monday morning.  He was not able to come off the oxygen so they keep him over night.  He is still in pain and sleepy but he is home. 

We will redo the sleep study Friday May 11th

THANK YOU for all the prayers and phone calls.

Pam

 

April 17, 2007

We still have hope, faith, and determination to get this trach out before summer!!!  

Here is the schedule:

April 23 - This Monday – surgery to take out tonsils, adenoids, and a bronc (check his airway to make sure it is clear).

May 11 – 3 weeks after surgery – redo the sleep study

May 21 – assuming he passes this time – Another bronc and pull the trach.

June 2 – Beach trip (I DO NOT want to take a trach baby to the beach!!!!)

 I updated the website with some newer pictures of Zane.  Click here 

Pam

 PS – You should hear him do the donkey sound.  SOOO CUTE!!!  

 

 

April 9, 2007

Well, we finally got the results back from the doctor today about the sleep study.  He did NOT pass.  Ggggrrrrrrr

I was able to get an appointment with his ENT tomorrow to see if it might be his tonsils.  We can have those taken out and do the sleep study again.  I will know more tomorrow. 

Here is a picture of Zane at the sleep study last week.  LOOK AT ALL THOSE WIRES!!!  We are still working to get the glue out of his hair.   : )

Pam   

 

 

March 31, 2007

Good Morning!!

Zane has had a GREAT winter!!!  There was not any hospital stays, no major sicknesses, and RSV season is almost over!!!

Tonight we are headed to Plano Pediatric Sleep Institute.  This is the first step to pull Zane’s trach.  We have to stay one night for them to monitor him sleeping with a cap on the trach.  If he passes, we have to have another bronc to make sure his airway is clean of any extra tissue.  IF that is good, I believe they will pull the trach then.  Within HOURS the hole will close on its own.  They will want us to stay a couple of nights in the hospital to monitor him.  

Is that exciting or WHAT???

Eating?  This is the most frequently asked question… AND the answer is…  “NOPE!”    He is such a turkey!!!  He will clean our windows with his tongue.  He will chew on video tapes.  He LOVES our phones and my computer mouse.  I even caught him licking up Trent’s shoe horn.  DISGUSTING!!!  BUT if you put chocolate pudding, apple sauce, or peanut butter in his mouth, he screams bloody murder.    He will lick Fritos or anything salty but not much after that. 

Zane is learning some sign language and it is fun to watch him try to communicate with us.  He also loves music!!!  He knows all the motions to the Wiggles tape.  Last night he was trying to count with Alexis and Zach.  I hope after the trach is out his speech can catch up.  I talked with Sunshine school where Zach goes two days a week at our church and HOPEFULLY Zane can attend also.   He will still have his G-Button so the teachers will have to feed him through that.  ????   I hate to put that on anyone that is uncomfortable.  That is my main concern.   I think it would be so good for him though!!!

Pam

 

November 8, 2006

Two years ago today seems so long ago, but at the same time it seems like yesterday. 

Tonight we celebrated Zane’s birthday with our new Wednesday night small group.  I tried all night to get Zane to show off all his new tricks AND NOTHING!!!  He would not perform for nothing!!!  Is that a 2 year old for you or what?   ZANE is no fun at birthday parties!!!  He does not like cake.  He won’t open gifts AND he pushes out his bottom lip when people sing Happy Birthday to him.     

I wish I could list all the blessings he has brought to my life.  He is an awesome awesome kid!!!  AND he is a ham…He cracks me up!! 

I wish I could list all the amazing people that he has brought into my life.  Doctors, nurses, therapists, friends, church families… whom I would have never met.

I wish I could list all the lessons I have learned because of Zane.   I need to start writing them down now.

I wish I could list all the reasons, God gave me Zane with his Trach, Gtube, Still NOT saying Mommy (even though he says dada and tata for Talley and GaGa and WEEEWEEEE when he is upset – VERY sensitive subject...), all the equipment, long nights, roller coaster rides – AND ALL.   He gave me Zane, so  I could learn patience which I am still learning!!  Did I mention that I think I have found a speech therapist so she can teach Zane to say MOMMY ASAP??!!!??

I wish I could list all the names of people who prayed and worried and cheered and cried for him.  THANK YOU!!!

BUT I can’t, because I am tired and want to go to bed.  Love you all!  Pam

October 19, 2006

Hello All!!!

Zane is doing great!  He is walking and yesterday he figured out that he likes OREOs!!!  (I think Uncle James won’t like this too well so don’t tell him.)   I am so excited!!!  It is such a break through.  He will walk to our pantry and stand there until we give him a cookie.  Then he will walk back to his room with it.  It is awesome!!!

Zane is having surgery on Monday.  Not a big deal and becoming a routine procedure… It is to take out the granular tissue around his trach and inside.  I believe it is blocking his air way above his trach.  The good thing is that Zane does not have to stay the night in the hospital.   YEAH!!! 

Trent’s friend from high school just had quads a couple of weeks ago.  They were born at 26 weeks same as Zane.  2 boys – 2lbs and 2 girls – under 2lbs.  Three of them are doing great.  Hunter though is having a rough time.  He has a sever brain bleed and not expected to live.  Zane was not expected to live several times either.  I believe God had no choice but to let him live because he got sick of hearing all the prayers that we all bombarded him with.  Can you please say a prayer for Baby Hunter and the rest of the Hutchison family?

This has taken me back to relive Zane.  I want you to know how much I appreciate everything you did.  Just a simple call or email really kept me going.  When you think to yourself - “I don’t want to bother them.”  “They don’t want to hear from me.” “I don’t know what to do.” “I don’t know what to say.” Or EVEN “They won’t know who I am.”   DO NOT LISTEN TO THAT BAD BAD VOICE!!!  The visits, the phone calls, and the emails uplifted me, kept me going, and I didn’t feel like I was alone.   When I would hear from people I didn’t even know, it really amazed me.   You do not have to say anything except “I am praying for you” or “I just wanted to let you know I am here for you.”   

THANK YOU FOR ALL THE PEOPLE THAT DID THIS FOR ME!!!   I feel so blessed to have you!!!  Trent and my kids do miss all the wonderful food.  (Hint Hint – Courtney Cartwright)

Pam

www.carepages.com   HutchisonQuads

 

August 25, 2006

Zane is VENTALATOR free!!!  YEAH!!! 

We got home yesterday and that wore me out.  What is worse than going to the hospital when Zane is sick?  Well, Let me tell you… Going to the hospital when he is well!!!  He crawled up and down those halls.  He had a great time “running” from nurses. 

The nurses were very excited to see how great he is doing.  I wonder if the nurses get to see the kids much after they are better. 

Now we have to stay healthy through the winter so we can take the trach out.  The nursing hours are now being cut.  I have mixed emotions about this.  YEAH – We can have our house back and be a “normal” family.  BOO – I think I will cut the night hours since Trent is here to help… less sleep. 

My mom is still here AND Zachy is getting VERY spoiled. 

Pam

PS- I am still looking for a Speech Therapist and a Physical Therapist

 

August 19, 2006

Hello, All!!!  We had a great vacation.  NO ER visits which is always good.  He had a great time… we all did.  The one thing I could not tell you was that first we went to Abilene to surprise Trent’s dad for his 60th birthday.  It was awesome.  We got to take Zane to their church and Terry got to introduce Zane to his congregation.  I do not think any of us had a dry eye.  I don’t know who had more fun… All of us getting to surprise him or Terry getting surprised. 

BIG NEWS – On our vacation, the hospital called and said they have an opening for Zane to come in to get him off the vent.  Monday morning I am taking Zane into "Our Children's House" for a few days to get him off the vent.  The trach will still be in place.  He still has to make it through the winter OFF THE VENT to be able to take the trach out. 

Zane still isn’t eating AND we have lost our speech and our physical therapist since we moved.  He is licking Fritos.  I will attach a picture.  

Alexis started Kindergarten Tuesday and she LOVES it.  It has been four days and I am still crying about the whole thing.  I will attach a picture of her in her uniform. 

 

Zach is having a hard time not being able to go with Lex.  The only comforting thing is that he is going to Sunshine school and his teacher will be Mrs. Leslie.  If you remember Lex had her and she LOVED her.

OH my mom is dropping EVERYTHING to come take care of the kids next week while we are at the hospital.  THANKS, MOM!!!

Sorry this was so long… I think I am rambling now, so I will go to bed.  Pam

 

August 2, 2006

Long time no talk…which is a good thing…No more hospital stays.  We spent one day at a couple of ERs but other than that we have been good.  (GTube came out and the hole closed up.)  We are still on the waiting list to go back in to get completely off the vent. 

We moved to Forney a couple of weeks ago, so I have new info to give everyone.  It is in the country with a swimming pool with an awesome front porch.  I LOVE IT!!! 

10634 Bradley Cir

Forney, TX  75126

New Home: 972-564-1808

Cell is still the same

New email:  PamelaBrown@cebridge.net

We are going to try to venture out of the house on a vacation with Zane and NO NURSE.  We are going to Hot Springs next week.  Pray there will not be any ER visits!!!  J   After all the oxygen tanks, vents, monitors, medicines, nebulizers, suction machines, I hope there will be room for the rest of us!!!

Pam

PS- Before you ask, we will not be changing churches.  (ARE YOU NUTS???)

 

April 6, 2006

WE ARE HOME!!!  Yeah!!! Two weeks is WAY too long.  All the nurses remembered us and were great.  I actually didn’t mind being at this hospital. 

The granular tissue that they took out of Zane was blocking his air way… BUT it was above the trach so when he had the trach in, he was fine.  When the trach came out, he turned blue then gray.  He did it so many times while we were there.  He freaked a lot of nurses and respitory nurses out. 

I am so happy to be home with ALL my kids and my hubby.  Poor Trent… I really have to give him BIG points for this one.  He went to work all day in Forney, brought me dinner every night in down town Dallas, then drove all the way back (usually late) to see Lex and Zach, do housework, etc…  FOR TWO WEEKS!!!  He had such a great attitude too. 

YEAH WE ARE HOME!!!!!!

Pam

 

April 2, 2006

Zane is doing so much better.  He is still on the vent 24/7 and the settings are still up BUT he is finally off the oxygen.  YEAH!!!   He is back to his playful, cute, silly self.  It is so amazing how in love I am with my kids… even Zach.  HEHHEEEEE  It is a good thing Zachy is as cute as he is because sometimes he is a handful!!! ALL BOY!!!

Last night Trent stayed up at the hospital for me so I could come home.  My mom left this morning so we are all headed up to the hospital.  We are hoping to be able to come home tomorrow BUT you know how that goes. 

OK are you ready for the THANK YOUs?  I have a long list…

  • Grandma and Grandpa with Dakota for keeping the kiddos

  • Tory, Liya, and Rain for letting Zachy stay the night too.  (Funny story)

  • Thank you, Steph and Sean, for too much to list!!!  (spending the night, packing lunches, clothes, driving them to school and MDO, etc…)

  • Thank you, Talley, for putting up with Zachy’s abuse and keeping them those nights and not throwing Zachy to the curb.

  • Sephanie Ownby for taking the kids home from school AND driving them home.  Trinity, they had a GREAT time playing with you!!!

  • Thank you, ladies (who I don’t know who all did it yet) that brought us casseroles!!!  THAT IS HUGE!!!!  My kids thank you too!!!

  • AND THANK YOU, Grandma with the mouse, for dropping everything and driving from Amarillo to keep the kids and cleaning my house.

  • Thank you for all your calls and emails and prayers!!!

HOW CAN A FAMILY BE ANY MORE BLESSED???? 

Love, Pam

 

March 31, 2006

I talked to Zane last night on the phone!  What a cutie!!!  He said “Hi” and “Dada”.  He is feeling so much better.  Pam said since he was not saying Mama yet the nurses wanted to have him saying “Mama” in sign language before he went home.  

His oxygen is still at 40% so the doctor wants to keep him there over the weekend and into the first of the week.  They do not want to let him go home until his settings are back to normal.  Grandma from Amarillo is staying with Zack and Alexis until Sunday and after that Pam & Trent will need your help again. 

Thanks, Aunt Debbie 

P.S.  Zane wanted me to tell Grandpa Happy Birthday!  

 

March 28, 2006

Hello, this is Pam's sister Debbie, and I am going to try to update everyone on Zane. Pam is still with him 24 hours a day at Childrens, Floor 7, Room 402. The phone to Zane's room is 214-456-7702. She wanted everyone to know that his procedure went well and they could not find anything wrong with his Nissen, therefore no reflux! She also said he would not have to go to the ICU. His fever is down, but still has the ventilator settings relatively high. He is acting a little better, and sleeping alot. When he is feeling better the Doctor wants to do another scope procedure, and then maybe he can go home! Sooooo in the mean time I know that Pam will need help with Alexis and Zack.

Thanks for your love and prayers,

Debbie

 

March 26, 2006

Zane is scheduled to undergo another bronchoscope in the morning.  They will be checking his throat and his nissen/stomach to see if everything looks ok.  His lungs may have fluid in them indicating he may be aspirating into his lungs.  Right now the nissen blocks anything from going back up his esophagus from his stomach preventing reflux.  If the nissen surgery has given out, then he may be having reflux, which is going back into his lungs.  He may possibly have to have surgery again to repair this.  We will know more tomorrow after the procedure.  Thanks for everyone’s thoughts and prayers.  We will update this tomorrow.

Trent

 

March 23, 2006

Zane has a temp of 105.  He is working very hard to breath and needs oxygen.  We are headed to the ER at Children’s.    Sorry I haven’t been able to call anyone before you got this message. 

Pam

 

February 10, 2006

Hospital again Hospital again, Jiggety Jig…   Just doesn’t have the same ring to it, does it?

Zane has the Roda virus and is dehydrated.  We tried to keep him home by the Pedilyte but it just isn’t enough.  Our nurse woke us at 3:30am ready to go to the hospital.   I am waiting for the doctor’s call and then we are out the door.

My mom is coming in from Amarillo to keep the kids.  Talley might keep the kids until mom gets here.  (I say might because she doesn’t like getting woke up this early… Maybe it is my singing???   NAH!!!)

I will email later with more.  Pam

 

February 7, 2006

Actually the stay was not all that bad.  All the nurses were super nice, and I even got to sleep most nights.  Zane is doing great, and I am sure he is happy to be home too.

OK Bad news now… I was already preparing myself for it but it is definite now.  Gelfand said this morning that Zane would not be getting his trach out this year.  It will probably be May – June ‘ish’ of 2007  IF he can make it through next winter.   We are still going to work on getting him off the ventilator so that is good.  The final diagnosis was RSV (even though he gets shots every month not to get it) and an infection in his trach.

I am sad because I was ready to start being a normal family.  It is hard to give up my plans and turn the control over but I know it is the right thing to do.  You would think that I would have already learned to do this BUT I have a hard head. 

Thank you to everyone that helped with the kiddos!!!!  Talley, (of course!) Amy, and She She … Trent’s parents have them now in Abilene and Talley will bring them back Thursday.   (Gail is sending Zach home potty trained!!!  THANK YOU, GAIL!!!)

Yeah we are home!!!  Pam

 

January 31, 2006

Frustration!!

I hate the hospital. I hate the hospital.  First we were told that his xrays showed either pneumonia or a small part of his right lung collapsed.  RSV was ruled out.  NOW they are saying that the RSV results came back positive.  Which means it just has to run it’s coarse.  We will probably be in the hospital a week or so.

The phone number to the room is 214-456-7702.

Sorry for little details but I am in a hurry…  Pam

http://www.astdhpphe.org/infect/rsv.html

 

January 30, 2006

We are headed to the hospital.  We are all sick but Zane is bad.  Talley is keeping the kiddos for me tonight.  She is such a lifesaver!!! 

They already have a room ready for us at Children’s E7 room 402.

 I will email as soon as I hear something.  Pam

 PS – Today is Trent’s birthday!!! 

 

January 12, 2006

Hello, All!!!

It has been a long time that I have sent out a bad report AND I do not miss it!!!

GOOD NEWS first… Zane’s procedure was a world record in time.  The time we left him to the time they came to get us to say he was done was MAYBE 15 minutes!!!  There was irritation under the G-button (feeding tube) area that is probably causing all the bleeding.  Everything else looked good.  Yeah!

BAD NEWS… Hospital was horrible.  (I really don’t know how we did that for 7 ½ months.) Zane has been off the ventilator for 16 hours a day for almost 2 months with no oxygen most of the time.  Tuesday when we went into the hospital we were off the vent and no oxygen.  That night he was on the ventilator with 40% oxygen.  They did blood work, blood gases, and took chest xrays.  I had him down to about 27% by the time we left the hospital last night.  This morning he is back up and cannot come off the vent at all.  I just got off the phone with the doctor. He said if they would have got his blood work back last night before we left, they would NOT have let us leave.  His white blood count is way high.  He wants us to go back to the hospital right away.  UGGGG   He is going to give us 24 hours with antibiotics and tobi (this is the breathing treatment that cost $3,240 and should cure cancer for that amount).  If he isn’t better, we are checking back in to the hospital tomorrow.  :(

HISTORY… I don’t know why I remember this date expect I remember promising to give Zane a spanking on this date one year ago.  1/11/2005  - I walked into the NICU room, and Jennifer (Zane’s day nurse) and Dr. Minnich looked terrified while they worked on Zane.  I remember standing back thinking this is “faith”.  There was absolutely NOTHING I could do but pray as I watched them save Zane’s life AGAIN.  They will always have a special place in my heart. 

Pam

PS-THANK YOU Ladies Bible class nursery for keeping the kids, thank you SHE SHE for taking the kids home with you AND thank you GAIL for driving all that way to keep the kids.

 

January 5, 2006

Hello, All!!! 

Zane is doing great.   We still have not heard from Our Children’s House to schedule him to get off the ventilator.  This is actually a good thing because Zane along with the rest of us are trying to get over colds.  I don’t think he could have made it off successfully.  He couldn’t go without oxygen and had to be put back on the vent several times to keep his sats up. 

Zane has been having trouble with his stomach.  He has a button that goes to his stomach that we feed him through.  (The boy has teeth but won’t use them!!!)   We don’t burp him the conventional way either...  All we have to do is open the button and the air comes out.  The past several months when we do this along with the air, we get dried blood.  SO the GI doctor wants to go in and take a look to see what is going on.   

We have to go in on Tuesday the 10th but the “procedure” is not till Wednesday the 11th.   Gail is coming for the surgery but I might need someone to keep the kids part of Tuesday depending on when we have to go in.  Do I have any volunteers?

Pam

PS-OH I almost forgot… Zane is finally rolling over!!!  YEAH!

 

December 8, 2005

I have to share something my kid can do that I bet your kid can’t!!!

OK you know that Zane has a trach which is below his vocal cords.  He can get air past his trach to make a little noise but it isn’t much unless he is really mad.  There is a filter thing (HME) that we put over the trach when he isn’t on the ventilator.  If we take the HME off the trach, Zane will stick his thumb in the hole to plug it up, so he can make lots of noise.  It is very funny and he is very proud of himself when he does it. 

Sorry I had to do a big explanation for such a little thing! BUT I do have it on video.  : )

Pam

 

December 6, 2005

Hey, everyone!!

I am so excited to share this news!!!  Zane is ready to come off the ventilator!!!  YEAH!!!  He is currently at 16 hours off the vent a day and is doing great.  The bad thing is that we have to back into “Our Children’s House” (UGGGGG!!) for 4 days and 3 nights.  They will call us when they have an opening, which can be anytime from now until after the New Year.    THEN hopefully the doctor will still let us pull the trach sometime around summer.

Zane is 19lbs and growing like a weed.  His blood gas was awesome and I am so excited!!!

Yesterday Zane had to get X-rays to rule out Osteogenesis Imperfecta (brittle bones).  I am not too worried about it.  Today was vent clinic and Thursday is RSV shot again. 

Busy week…  THANK YOU Stephanie French for keeping the kids so Trent and I could go out last night and THANK YOU Talley for keeping them today while we were at Vent Clinic. 

Love, Pam

 

November 3, 2005

Can you believe Zane’s birthday is just a few days away?    I can’t!!  Everyone keeps asking what we are going to do for his birthday.  (It still surprises me that so many people remember when his birthday is.)   Well, we have racked our brains trying to figure something out.   I SO want to take him to church and introduce him to EVERYONE.  I want to show all the church how well he is doing.  I want to show them what their prayers did.  I want them to see that he has the cutest smile with a BIG dimple and his hair is going to be curly.  I want to tell them that they kept me going through all those months.  I want to show pictures of the scary, little alien he was and the perfect, little guy he is now.  I want to make a great speech telling them all these things and how much I love them. 

What?  WHAT AM I SAYING???  I could never do that!  I can barely speak with more than 4 people looking at me. 

OK so we will be reduced to staying in our house AND inviting everyone to come for the festivities.   

Tuesday, November 8  at  6:00 to 8:00pm 

RSVP so that we can make sure we have enough hotdogs and cake for everyone.   Email or phone 972-278-6585

Pam

PS – I finally spoke with the doctor today and we get to start weaning his vent again!!!!  YEAH!!

 

October 21, 2005

Today is the wedding of my best friend from childhood.  Alexis is the flower girl and Zach is the ring bearer (We might need to send out a prayer request for this!!).  Trent’s dad (Terry) is performing the ceremony so hopefully they won’t be yelling out “PaPa” like they do when he preaches.  J

Tomorrow we have a birthday party for Anna, which we have to leave early for Alexis’ soccer game.  Then we have to rush home for the Tech vs Texas game.    If Terry and I live through this (Terry is a Texas fan), then they will take Alexis and Zach home for a few days.  I will take a nap.

The kids and I got a cold last week, which we gave to Zane.  L  We have to be much more carefully about keeping the kids AND me away from him while we are sick.  It is so hard!!!  This cold set us back on the weaning of the ventilator.  Today will hopefully be the first day back to 6 hours twice a day off the vent.  Zane did get his first RSV shot last week and he will have to get it every month during the winter months.

Zane got his second helmet in and it is working beautifully.  The first one was a disaster and did not work.  This one is completely different.  His head is getting more and more round everyday.  His ears are still a little lopsided and his right check still protrudes a smidge.  BUT his forehead looks much better.   

Eating… UGGG!  You know he has the button that we hook up to the formula and it goes directly to his tummy.  We do this every 4 hours so really I don’t think he gets hungry.  We try feeding him the conventional way but he really does not want it.  He is very good at holding his mouth open for as long as it takes to drool it out.  I have tried applesauce, desserts, oatmeal, bananas, milk with baby rice, etc… I don’t think it is the taste but the texture that he doesn’t like. 

OH, we have teeth!!!  (We won’t eat but we have teeth!!!)  He is sitting up with minimal help.  He is still working on rolling over but he is connected to so much stuff that it is hard.  He LOVES his sister and brother.  They can make him laugh so easily!!! 

Love, Pam

 

September 20, 2005

Long time no talk!

I have gotten out of the habit of writing.  I know when I have gone too long because I start getting emails wondering how Zane is doing.  He is doing great.  17 ½ lbs and off the vent 4 hours twice a day.  I do not think we will hit my goal of being off the vent by his 1st birthday but it shouldn’t be much longer after that.  The goal is to pull his trach out at the beginning of summer 2006.

Anyway, we went to vent clinic today.  This is where they Xray his lungs, do blood work, and give us new orders for the month.  Dr. Gelfand told me today that Zane’s Xrays look “normal”.  What is “normal”???  Normal for Zane, Normal for a baby with Chronic Lung Disease, Normal for a normal every day kid,…????   HE SAID… NORMAL FOR AN EVERY DAY KID!!!  Can you believe that???  Little Zane’s lungs are normal!!!  I did my best not to cry like a baby.  I am amazed everyday of how very blessed I am. 

Can you believe it has almost been a year?  Crazy!!!  Things are coming around that reminds me of that time… “pre-Zane” or “Pregnant with Zane”.  Halloween – I think of Alexis dressed as Annie talking to more complete strangers than she will probably ever do again (except maybe on Halloween again).  Zach was (maybe I should say suppose to be) an elephant but he wouldn’t wear it.  I think about all the walking we did and wonder… “what if” I would have stayed home and rested instead.  “what ifs”… as my sister’s in-laws say… If “ifs and buts” were candy and nuts, we would all have a merry Christmas.  Yata Yata!!!    We had a sign up for our class party.  We all went to that last year on Saturday and Zane was born that next Monday.  Just little things remind me.

In other parts of our lives… Alexis played her second game of Soccer today.  It is a blast to watch.  She scored two or three goals.  Zach does a great job cheering her on and terrorizing the rest of the parents and siblings. 

I will try to write more often.

A Very Excited, Pam

PS- Thank you, Julie, for keeping the kids on your birthday, today, while we went to the vent clinic.  (Sorry, I forgot that I told her I wouldn’t tell anyone that today is her birthday.)  Thank you, SheShe, for keeping the kids this Friday for me!!!  (Shirley does have some openings at her home for any of you looking for a daycare.)  I am looking for a babysitter for Thursday night if you know of anyone that doesn’t have school the next day.

 

August 15, 2005

We are HOME!!  I LOVE HOME AND I love my bed AND I love not having any buzzers going off every two seconds for no reason!!!!  I LOVE that my nurses here don’t come in and wake me up to ask me silly questions!!!

Zane did great.  He can hear just fine.  His ear canals are very small and were filled with wax.  The doctor cleaned them all out and made a hole to drain some fluid in one ear.  He removed the granular tissue around his trach site and did a bronchoscope.  Everything inside looked good too.  

We didn’t get home until 7:00 tonight so we are beat.  I am going to bed!

Pam

PS- Thank you, Browns and Davenports, for keeping the kids!!!  Thank you, Chelsea, for keeping the kids for tomorrow’s doctor’s appointment.  UGGGGG!!!

 

August 10, 2005

Good afternoon!!

Isn’t it nice that you don’t get very many emails from me now? 

Yesterday at the “Vent Clinic” all of Zane’s tests came back good.  Blood gases are wonderful.  Oxygen is down to a half of a liter, which is VERY little compared to the beginning months.  The Doctor weaned his vent more and now I officially get to take him off the vent....30 minutes twice a day.  Next week it will be an hour twice a day and following week will be 2 hours twice a day.  OH and he is 15lbs 6oz. 

Trent is taking the kids to Abilene Friday and then is playing golf on Saturday before he comes back.  (No, no golf for me… but I am not bitter about it at all!!!!!!!  I am claiming that they just don’t want to be beat by a woman. :) )

Anyway, we take Zane to Children’s Hospital Sunday morning sometime and the surgery will be first thing Monday morning.  The Browns will bring Alexis and Zach back Monday, I believe.   SO we don’t need kid-sitters, but thank you to all of you who have called and offered!!!

Have a great week!  Pam

 

July 27, 2005

Hi all,

We have had a full week or two.  Last week we had doctors’ appointments almost everyday.  Then Sunday my sister, Debbie, and family came.  Of course they took the kids to the water park and six flags and spoiled them beyond belief!!! 

Last week we had a great appointment at the “Vent Clinic”.  This is where the nurse and I take Zane back to Our Children’s House downtown to meet with his pulmunologist. They take blood, look at his X-rays, etc…  Everything was great.  They weaned him down on the ventilator and then gave us directions to wean more a week later, which we did.  He is doing great.  VERY EXCITING!!!

Then next appointment was with the Ear, Nose, Throat (ENT) doctor.  He tested Zane’s hearing… well the movement of his eardrum.  It was not good again. This is the second one he has failed.  SO the ENT wants to admit him back into the hospital for a night and do a “true” hearing test.  We check in Sunday, August 14th.  Monday morning they will put him under and check out his ears.  If it is just fluid, the ENT will put tubes in.  This way we will know exactly what is going on.  He will also do a bronchoscope to remove any scare tissue and the granular tissue around his trach area.  We should be able to bring him home that day.

I think that is all the new news.  Have a great week!  Pam

 

July 17, 2005

Zane had a rough night and morning.  Through the night we kept hearing him cry which is pretty abnormal for Zane.  He usually sleeps through the nights now.  The nurse kept saying that she was just suctioning his nose and making him mad.  Yada yada!!!  Anyway Trent got up at 7:00am to relieve the night nurse.  We knew we probably wouldn’t have a nurse for today.  Not long after she left, I still heard him crying so I went in to find that his trach was out.   It must have been out for a while because I could not get it back.  I finally got the smaller one in.  I really thought we were about to rush to the hospital because it took some force to get the smaller one in.  There was blood and Zane was crying and I was trying not to panic.   UGGGGG!!!   His saturation levels were great and his heart rate was a little high but overall he did good.

ANYWAY Zane is sleeping now and Trent took the kids to the water park.  All is quite. 

Other than that the week went well.  We had a Cranial-Facial appointment – Zane has to wear helmet 23 hours a day.  (He is very good at making us feel sorry for him and we take it off.)   This next week we have a doctor’s appointment everyday.  I will need volunteers for kid sitters. 

Monday – Julie Davenport has already volunteered.  (THANKS, JULIE!!!)

OH AND we have a new rule - If you are going to bring us food, you have to stay and eat with us.  Todd and Laura Robertson with sweet Reid brought us some wonderful food and we had a great time too!!! 

I hear buzzers so I better go – Have a great week!  Pam

 

July 11, 2005

Three weeks today!!!  It is very exciting!!!!  He is so cute!!!  Really… I am not just saying that because I am his mom!!!  (Isn’t it funny that mom’s don’t have it in them to be unbiased?  Some mom’s are just better about not talking about it to others.  Obviously I am not one of those!) 

Today Zane’s speech therapist came.  She is working on his mouth muscles and she will eventually work on getting him to eat.  Last week we had a doctor’s appointment for his thyroid.  Tomorrow his OT will come to work on getting him caught up on his physical stuff like head control, sitting, rolling over, etc…  Wednesday we have a Cranial Facial appointment because his head is flat.  (But he is still cute!!)  He does have a helmet to reshape it back to normal but that is a whole different doctor appointment.  (Thanks to the Galbraith’s for the wonderful Texas Tech decals to make it a real helmet!!!) 

Zane being home is so wonderful but still a little stressful on everyone.   Zach is being a little more irritable than his normal ill-tempered self.  Alexis needs a little more attention.  Trent … uggg we won’t even go there!!!!  (Heeheeeee-just kidding, Trent!!)  Jennifer did come over tonight and took care to the kids for an hour or two so Trent and I could go out to eat.  (BIG THANKS to Jennifer!!)

Love, Pam

PS-I was quite amazed by how many people responded about wanting to stay on the list.  I didn’t know that I knew that many people AND I am a little embarrassed AND I feel very blessed!!!

July 4, 2005

Hello, ALL!!!

If you want to be taken off the update list, please let me know.  Maybe I should actually say, if you still want the updates send me an email.  I don’t want to keep torturing everyone with my babblings. 

We have had a wonderful week.  Zane is so cute!!!  He is getting spoiled too.  Every time we put him down he starts making noises.  I love that he can “talk” around his trach.  HE IS SO AWESOME!!!  He still won’t take anything from a bottle but we are still trying.  I have been able to turn his oxygen off for a couple of hours each day.  Sunday our day nurse never showed up so Trent and I, both, stayed home from church and took care of him.  It was fun.  We rolled all his equipment into our bedroom and took a nap with him.  (The things we use to take for granted.)

Zach went with Grandma and Papa to Red River while Alexis stayed here to go to VBS.  Then both went to my dad’s for 4th of July weekend.  They had a great time getting spoiled!!!  Trent and I had some time with Zane and some much needed alone time with each other. 

I want to thank you all again for all the food, cards, phone calls, visits, and prayers through all this.  I really really would not have been able to make it through all this without all of you.  From the VERY VERY beginning when Jen, Erica, Mark, Steph, SheShe, Talley, and Tory all sat in the waiting room till the wee hours of the night… to everyone that kept my kids … to the girls that took me out to keep me sane … to all the food … to the crazy van!!!!  … to the sweet bear and balloons that came for Zane the day he got home.  (Chels, Zane sleeps with him.)   I wish I could express my feeling for you.  I want to hug every one of you.  THANK YOU!!!!

I do feel sorry for Trent and the kids.  They are going to have to start eating the food I cook … all three dishes!

I love you!!!  Pam

PS-Send an email if you still want my silly updates.

 

June 24, 2005

Are you ready for these updates to end?  We have been together for so long it is going to be hard to break it off.  Really… what mother wouldn’t like to have an audience for her stories of her baby????

The first week was… exciting!

Monday:  We came home in our wonderful van.  We didn’t have a nurse until the night but it was nice.  My mom was here and she took the kiddos out for several hours.  Trent and I were alone with Zane for the afternoon… OK OK Trent was really alone with Zane because I took a nap.  HEEHEEE   AND Jennifer brought us food…mmmm!!!

Tuesday:  Trent took the kids to the water park.  The nurse and I organized all the supplies and equipment.  (THERE IS A TON OF BOTH!!!)  I believe Lexie and I made our third Wal-Mart run at 10:00 that night. 

Wednesday:  Zane had his first pediatrician appointment.  He pulled his trach out right when the doctor came in.  My niece and nephew came for the night.  THEN the electricity went out for about an hour and a half.   My mom, her hubby, niece, nephew, Alexis, Zach, Zane, Nurse, Trent, and a partridge in a pair tree… all in the dark!!! 

Thursday: Everyone left.  Trent’s mom came and picked up Zach to take him to the Red River Encampment.  Lex is staying here so she can go to VBS.

Friday:  Lexie and I were lonely.  Amy Smith came to visit and brought us some of her wonderful food!!!

OH AND so far … all the horror stories have heard about home nurses have NOT came true.

Have a great weekend!!  Pam

 

June 21, 2005

ZANE IS HOME!!!!!

Can you believe it???  I can’t...  Seven and a half months later.  (I have to put the half in there, because it was a hard half month!!!) 

·        19,353,600 seconds

·        322,560 minutes

·        5,376 hours

·        32 weeks

·        224 days

·        7 months, 12 days

AND all 14lbs are home!!!

I was not able to hold him for the first 2 months of his life so I am going to make up for that now!!! 

Pam  

PS-If anyone else wants to help me hold him, you are welcome!!!

 

June 16, 2005

OK… I am not going to say when Zane is coming home since I have jinx it too many times already.  PLUS I said I was not going to say anything until they put us in the car and tell us to “GO HOME”!   SO stop emailing me!!!  I AM NOT TELLING YOU THAT IT IS THIS MONDAY 6/20/05!!!!!!  Got it???? 

Yours truly, Pam                                                             

 

June 4, 2005

You want the bad news, good news, or the excellent news first????

Bad news:  Zane is NOT coming home this week.  I am going to stop saying that he is until they actually put us into the car.  (Next week hopefully!!!!)  We are waiting for the insurance to get their paper work in order.  Everyone else is ready to go.  VERY IRRITATING!!! 

Good news:  WE HAVE MEDICAID!!!!!  I love my government!!!  They were able to override the clause that said we HAVE to be in a nursing home.      You know… God has his plan BUT sometimes I think he likes to see me squirm first.   (For the people that know Bob McAfee, you need to ask him to tell you the joke that he told me!!!)

Excellent news:  The church … Well, not even the church… Mainly two classes at our church bought us a VAN!!!  AND not just a van… A 2005 TOYOTA SIENNA!!!!  It had 40 miles on it when we got it!!!  INCREDIBLE!!!  They surprised us at our class picnic.  It is amazing!!!  Really no words can communicate how we feel.    

I wrote a letter that Trent read to our class but I think it really goes to everyone…

 Marrieds Growing Together & Marriage Builders & Everyone else that was in on this,

In the past seven months, we have had so many things happen.  The night Zane was born was unbelievably scary and heartbreaking.   

We spent too many nights at the NICU waiting room praying for our precious son to make it through just one more night.

We would stay up all night waiting for the Blood Gas results. 

The joy we had when they finally started feeding him milk. 

The day Zane’s heart rate bottomed out and I watched Dr. Minnich give him CPR.

There were several times I would tell God that I am not strong enough or that I can’t do it any more.  AND every time He sent one of you.  All your emails, phone calls and cards are what kept us going night after night.  All the wonderful food kept us at the dinner table together.  The visits to the hospital kept us from feeling alone.  

You have already done so much for us that you will probably never know and we will never forget.  If it wasn’t for you, I know I would be a mess!!! 

Thank you all for the car, the food, the friendships, and for all prayers that kept Zane alive.  Thank you for your love and support that kept us strong.  

Trent, Pam, Alexis and Zach

PS-Toyota of Dallas is the place that helped out BIG TIME!!!  SO if you need a car, ask for David Kelley.  He even donated personally to the van.

 

June 4, 2005

Here is the latest…

I called our local Representative’s office (Joe Driver) and spoke to a very sweet Teresa.  They called DADS (Department of Aging and Disability Services) in Austin.  This department is the one that will be making a decision to override Rider 28 which says we have to go to the nursing home.  If they do override, we will be able to keep Medicaid. 

I got a call back from Teresa yesterday that sounded very positive.  They were going to do everything they could under these circumstances to make it happen.  AND She said they marked it with Legislative status which means they will work my case ASAP!!!  YEAH!!! 

NOW the good part… There isn’t any reason for us to stay in the hospital since we are NOT going to the nursing home.  We are shooting for Tuesday (maybe Wednesday) to come home!!!!!  We have to wait for insurance, equipment, and home nursing. 

Alexis and Zach are ready to have their brother home.   Pam

 

June 1, 2005

I was waiting to send out an update till I had either good news or a plan of action.  I have neither.

Truman Smith in Gladewater has declined to accept us.  “Zane is not stable enough.”  Our social worker, the church, and I have called several nursing homes but none can accept a trach / ventilator baby. 

We have contacted the lady in Austin to see what else we can do.  She advised us to fax her the rejection letters and she will see if there is they will accept us into the program without going to a nursing home.  It has never been done before so it does not look good. 

Crazy that he is not stable enough to go to any nursing home in Texas but we still can’t qualify for Medicaid.  The Jacob’s gave me the idea to call our local representative and see what he can do.  I will do that tomorrow.  I am taking any other brilliant ideas if you have any.

Zane had a cold over the weekend but is doing much better.  Alexis and Zach both held him today and they loved it!!!  They are also ready for him to come home.  I am trying to get more pictures on the web site… I promise!!!!  

Please pray for my sanity.   Pam 

PS – I want to thank everyone in the Brother’s Keeper’s class who made us food.   We are getting VERY spoiled because these women CAN COOK!!!!!  Thank you for taking such good care of us!!! 

 

May 20, 2005

I just finished my last 24 hour room in and I am ready for a nap.  Trent does his tonight.  SO if anyone wants to do a slumber party with the kiddos and me tonight, give me a call!!! 

I found out today that there is one other trach baby wanting the spot at Truman Smith in Gladewater.  (If anyone has a connection, we could use a good word to pick Zane.)  Truman Smith is sending a respiratory supervisor over Monday morning to check Zane out to make sure he is “stable” enough. (WHATEVER THAT MEANS!!!)  They are actually checking out both babies before they make a decision.  It might be Wednesday before we know anything. 

Tuesday was his discharge date, which is now out the window until this is all worked out.  I am very sad but I am trying VERY hard not to be stressed.  

I had so much fun taking care of Zane yesterday.  He is so interactive now.  You can get him to smile at you pretty easily or even make a noise around his trach.  I LOVE IT!!!!  

Jennifer … Do you remember Jen was one of his primary nurses at Presby?  She brought her daughter by yesterday to visit Zane.  Talley, Jennifer and I got to catch up.  Talley and I decided that we missed Presby a bunch!!!

I will email when I find anything else out!!!  Love, Pam

PS- Dr. Minnich, if you could call Truman Smith and use your power and charm to get Zane in, I would be VERY appreciative!!!   AND Dr. Green, if you could give Truman Smith a call and use your... ummmmm...  Nevermind... I will ask Coach Knight to do it.  HEEHEEEEE

 

May 18, 2005

Talley’s poem to Zane

The day you came was quite a day,

All we could do was cry and pray.

Our fears realized, for all we knew

A child was born, who was not due.

Three months too early, you did come.

Congratulations, you have a son!

First days, then weeks, and then months did pass

When would you go home, we all did ask.

Your first six months were full of pain.

We hoped the next wouldn’t be the same.

Friends and family were there for support.

Every day, awaiting “Mom’s report”.

They gave their time, and prayers and tears.

That helped reduce your families’ fears.

The giant mountains now look like hills.

We look forward to celebrating all the thrills

That will come to us through your live,

a miracle because of Christ.

OH Talley!!!  She makes me cry with her sweet qualities, support, humor, and all around selflessness.  I have been blessed to have several of these people.  I really would be a total and complete mess without them.  They have wrapped too tight around my family that I have no choice but to stand tall and keep moving!!!    I feel like the luckiest person in the world. 

OK… here it goes…  We are not going home on Tuesday the 24th.  Instead we are moving Zane to Truman Smith Children’s Care Center in Gladewater, TX.  (This is about 20 miles east of Tyler = 2 hours east of Dallas)  We will be there for 4-6 weeks so that we can get all the paper work done for the MCDP waiver.  This will allow us to stay on Medicaid to help with medical bills. 

This has been a stressful decision since it is so far away and another month or so.  The benefits in the long run out weigh what we all will have to sacrifice for the next few weeks.  Anyway what are 6 more weeks to the 28 that we have already done???

We still have to be accepted into the Care Center but it is 75% a done deal.  We should know by Friday.

Thursday night, I will do my last 24hr room in.  Friday night, Trent will do his 24hr room in.   After that we will be free to go once all the paper work is done.  It could be the beginning of next week or the following week.  I will let you know when I hear anything.

Nothing like a big bomb shell, huh?  BUT look at it this way… this gives me 6 more weeks to work on Zane’s room/dinning room.  : )

Pam    “He will give his people strength. He will bless them with peace.” Psalms 29:11

 

May 17, 2005

7 DAYS!!!!

Incredible!!!  I have a long list of things I need to do before he gets here.

First, how do you turn your dinning room into a baby room with a dinning room table???  I am just not good with that kind of stuff.  I would rather work on the web site or a computer.  I need my sister here to do it for me.  (HINT HINT)

Second, I have been on the phone trying to set up all the supplies that we will need.  I get the respiratory stuff from one company, feeding equipment from another, stroller (High tech… it looks more like a rollercoaster car), handicap sticker, nursing, and on and on…

Third, I am trying to get all the kiddo’s, Talley’s, and my doctor appointments in before get the 24th.

Forth, I am trying to figure out a way to stay on Medicaid.   UGGGG!!!! 

I GOT TO GO!!!!!  Love you all! Pam

 

May 10, 2005

14 days and counting!!!

Zane is doing wonderful.  He is such a cutie and I can’t wait for all of you to see him.  (You know you are welcome to come to Our Children’s House to see and hold him, right?  He loves being held!!)  They are trying to get a custom trach that will allow him to move his head around easier.  Currently he likes looking to the right.  When you push his head to the left, it will spring back.  PLUS his little head is flat from only lying on that one side, so we might be getting a helmet to help round it.

I did my first 24 hour “test” Sunday night after the shower.  The most sleep I got at a time was 2 hours.  I had to feed and give him medications every 4 hours and breathing treatments every 3 hours.  I am still trying to catch up with my sleep.  Once we get our home equipment in, Trent and I will have to do a 24 hour “test” each. 

We had another conference today.  It looks like we will have 24 hour nursing for 1 month and 12 hour nursing after that.  I am a little disappointed.  Lexie and Zach require a lot of attention and I am worried.  Maybe it will be easier that what I am expecting.  (Have I mentioned that I am looking for a part time job that I can do from home in my spare time???)

Thank you so much for our shower Sunday night.  It was so awesome.  We counted about 25 to 30 families that were there.  I feel so blessed to have such a support group around us for so long…  For 6 months we have had non stop visits, phone calls, emails, babysitting, food, prayers, and friendship.   I cry every time I think of what all everyone has done for us. It is truly amazing. 

Have a great week.  Pam

 

May 5, 2005

Is it Happy Cinco De Mayo or Merry Cinco De Mayo? 

ANYWAY…  YEAH Cinco De Mayo!!!

Alexis had her Sunshine School program today and it was VERY cute.  She was a flower and had the BIGGEST grin on her the whole time.  It was SO funny. 

Alexis and Zach went home with her friend Kendyll to spend the night and then they are taking them to Abilene to get further spoiled by more grandparents.  Then “Grandma and Grandpa with Dakota” will bring them home in time for Zane’s shower at the church.  They had a GREAT time in Amarillo with “Grandma with PaPaw”.  Thank you so much for keeping them for so long!  OH and thank you Lori for taking them to feed the ducks… They are still talking about it.  Thank you, “Grandpa with Brook and Michaela”, for keeping them for the weekend… Sorry about the throw up in the car!

OHHHHH Chelsea, you have been a lifesaver with the kids.  Thank you so much for being so sweet and coordinating every thing!  Someday! Someway!  I will be able to repay you.   

The food, the food is so wonderful!!!  Thank you EVERYONE for the food.  9:00pm tonight we had not eaten and instead of starving we pulled out brisket, green bean casserole, and homemade peach cobbler.  MMMMMMMM 

OK OK now to Zane…  He had a swallow study yesterday.  This is where they put something in with his formula and Xray him while he swallows.  He passed!  Now I can give him a bottle once a day for 15 min with NO supervision.  He only takes about 5cc at a time.  30cc=1oz 

Zane had a hearing test today that did not turn out so good.  I am taking it as there was fluid in his ears and we will check back in few weeks. 

We are getting closer to home with a projected date of May 24th.  My plan is NOT to go past that date.  (Have you noticed that the doctors don’t really pay attention to my plans?)

I feel like I am babbling now so I will go to bed.       Love you!  Pam

 

May 1, 2005

HELLO ALL!!!  How are you doing?  We are very good!!!

We had our Tuesday conference and our goals to go home are:

  1. oxygen under 35%

  2. blood work back to normal

  3. Trent and I trained  (I have to do 2 – 24 hour room in and Trent has to do 1 – 24 hour room in.)

  4. Home nursing in line and ready to go for when we do come home.

Progress as of Sunday:

  1. oxygen at 31%

  2. blood work is good.

  3. Trent and I are 97% finished with our training.  I am ready to do my 1st 24 hour room in.

  4. Home nursing – I don’t know… I will check tomorrow with the case worker.

VERY EXCITING until I start thinking about it too much than I get VERY NERVOUS again.  (I can hear my dad now… “Don’t think about it and you won’t get nervous.”  OR would that be my husband???  I don’t know … they both are about the same.)

OH OH OH Another thing that happened as Trent was driving to the conference on Tuesday… YES He was hit from behind and the guy took off.  UGGGG!!!   3 wrecks - 3 uninsured motorists - 3 weeks

Kids are coming home tomorrow finally!!!  WE ARE MISSING THEM TERRIBLY!!!!

I think that is all.  Talk to you soon.  Pam

 

April 25, 2005

Long time no talk!

I am sorry it has been so long but I feel like I mainly give an update on us (the NON-hospitalized) than Zane (the one yall really want the info on).   

I will start with Zane… He was doing very well today.  His breathing was comfortable.  His oxygen level was at 38% all weekend.  They really don’t worry about it until it is over 40%, BUT I believe they want it around 30% before coming home.  He had a great blood gas this morning, which is always good.  OH AND Zane is officially in double digits… 10lbs!!! 

We have a “Care Conference” tomorrow afternoon with all the people.  I am ready for tomorrow because they are all forced to sit down and talk to us.  I was VERY spoiled at Presby.  I had access to a doctor all the time if I wanted to discuss anything. I have seen the pulmonologist once since we moved.  The nurses spoiled me big time too at Presby!!!  Trent and I have had run-ins with two nurses already, and we have only been there a little over two weeks.  

My sister (Debbie) came this weekend and took the kids back home with her.  My mom has them now in Amarillo for a week.  (We will see if Zach gets sent home early.  HEEEHeee  Poor Zach!!)  I miss them terribly!!! 

Our church is on their second rounds of food.  They are spoiling us too!!!  (Courtney sent Beef Stew, French bread, Cheesecake, and Banana Bread mmmmmmmm)

Have a great week!

Pam

PS – Sorry, Courtney!  I just couldn’t resist.  Everyone will ask what you brought anyway.  : )

 

April 14, 2005

Hello, All!

I haven’t been very excited about sending an update the last few days.  I hate sending yucky news all the time.

Zane is working very hard to breath.  His head bobs up and down for every breath.  It is so hard to watch him struggle and know that there isn’t a thing I can do to help.  He breaks my heart. 

We had a care conference on Tuesday with the Pulmonary doctor, Nurse Practitioner, RT, Social Worker, etc…  He said at the best Zane might be home in 6 weeks but his guess would be closer to 3 months.  1) Zane is still VERY sick.   2) Home Nursing has to be set up which is a big battle with the insurance.  3) Trent and I have to be completely trained. 

Tomorrow they are doing a bronchial scope thing (I am an IT person… Not a medical person!!).  This will find out if there is something else going on that we don’t know about.   This will be at 7:30am and Trent will be with him when they do it.  It really doesn’t sound like something I want to be there for. 

There is a possible chance that they want to put him back on the conventional vent instead of the home vent to see if that will make him more comfortable.  BUT this means we will have to go to the hospital.  AND not MY Presby hospital with MY nurses and MY Neonatal doctors that I love so much.  UGGGG we would be going to Children’s hospital at Baylor with all new doctors and nurses.   I am not good with change!!!!

Thank you all for sticking with me through all this.  When I get down, all I have to do is come to my computer and read emails you send.  It always lifts me up.   

I have another request… I really don’t want to wear out everyone with my kids so I am going to make a list and a schedule for my kids.  If there are any volunteers to keep my kiddos, please email me back.  If it would be easier for you to pick them up after Sunshine school and keep them for an hour or two, just let me know that too. 

Keep praying!!

Pam

PS-Lexie has requested to go to Luke’s house with Luke’s mommy.  (Jolie, do you have a day free?  She loves you!!!)

PSS-Courtney, I will never turn down food from you!!!  Thank you so much!!!  Monday or Thursday is good.

 

April 10, 2005

What a crazy few days we have had. 

Zane is alright.  His oxygen is back up to 60% and they are not being able to wean it.  Trent stayed the night with him Friday night and he said it was better than my night with him.  BUT when I spoke with the nurse, she said Trent didn’t get much sleep.  We have found a couple of really nice nurses.  THANK GOODNESS!!!

Several couples came over Saturday to help us get the house ready.  We got so much done.  I am very impressed. THANK YOU!!! PLUS Chris’s cousin came and laid the carpet for us.  (Info at the bottom)  Thank you, Jana, for all the JCPenny stuff.  We would have never been able to get all that done by ourselves.

I went up to the Children’s House after everyone left to play with Zane.  On my way home, I was stopped at a red light and a guy in a truck hit me.  I am alright but my car is not so good.  He took off and I chased him.  I was able to get his license and a police report.  Of course the guy didn’t have any insurance.  What else could happen???  Well I shouldn’t have asked that BECAUSE I got hit again tonight on the way home from the hospital.  I am fine again but now my car is really really messed up.  So if you see me driving my poor car, DON’T LAUGH!!! 

If you know of anyone in the car business, we might need to get one.  UGGGGGGGGG!!  Pam  

April 8, 2005

I stayed with Zane last night and it was absolutely horrible!!!  The buzzers went off at least every 30 minutes.  The RT nurse would come in to give his treatment every 4 hours.  Another nurse came in to start his feedings every 4 hours but for some reason he would do it right when it was quite.  Then he would come in again an hour later to turn it off.  I had to talk the blood pressure/ temp nurse out of changing his diaper every hour.   UGGG   (I want My Jen and My Faye back!!!)


And THE BUZZERS THE BUZZERS ~ THE HORROR THE HORROR


OH but for some reason every time his vent popped off his trach, they never came running.  This is definitely going to take some getting use to.


OH OH AND THE BED… NO, not a bed - a chair that is even worse!!!  It is plastic and the sheets don’t stay on because they slide right off.  AND it is too short!!! 


Poor Poor Trent!  He is staying up there tonight.


THANK YOU, ANNE, for keeping my kids so I could sleep. 


Love from Grumpy Pam (with a headache) who wants her NICU back!!! 


PS-Today is Zane's 5 month birthday 

April 6, 2005 


It looks like we are skipping the Garden Room and moving straight down to Our Children's House at Baylor.  Right now the move will take place tomorrow Thursday the 7th, which is one day shy of 5 months in the NICU.   After 150 days, you would think we would be ready to get out of there, but you get so attached to the doctors and especially the nurses.  I already had to say good-bye to one of Zane's primary nurses and it was so hard.


Here is my schedule and schedule for the kids:
    Thursday: 9-2 Sunshine school  - Zane gets moved 
    Friday: 
    Saturday:  Church people helping us get our house ready
Sunday:  We will take the kids down there.
Monday: 9-2 Sunshine school
Tuesday:  Anne Tamplin

Wednesday:  SheShe

    Thursday: 9-2 Sunshine school – Steph’s shower

    Friday: 

Love, Pam

 

April 2, 2005

Hello all!!!

Don't you like not getting so many emails from me?

The home vent is in and I think we have almost all the kinks worked out of it. The plan is to move to the "Garden Rooms" tomorrow or the next day. The Garden Rooms are more private rooms that we can stay over night but there isn't a nurse by his side every moment. Hopefully this will be a good transition before we go down to the Children's house at Baylor. This move looks like it will be in a week or so.

Zane is loving his applesauce.  He is 8lbs and 8oz and he has rolls on his thighs that you wouldn't believe!!!

When Zane moves down to the Children's house, Trent and I will be his primary care givers. They do have nurses but they are there to help us. I will need help with the kids. PLUS Talley is leaving me for three weeks to go to New Zealand to see her sister. (BUT really, I think she needs a vacation away all this madness!!!)

Here is my schedule:

    Monday: 9-2 Sunshine school

    Tuesday: 9-2 Mother's day out (I am not sure how much longer we will have this though! Rebecca?)

    Wednesday:

    Thursday: 9-2 Sunshine school

    Friday:

    Weekends: Trent and I can take turns.

After Sunshine school, Anne has been taking the kids home with her. But sometimes she might need a break.  OR even if someone can bring the kids down to me OR if you have any ideas please let me know.

Love, Pam

 

March 26, 2005

Alexis and Zach got to see Zane!!!! The nurse and respiratory nurse wheeled him to the window in a little red wagon. It was so awesome. Lex said she loves him and Zach screamed when we had to take him back. I added some pictures to the web site on Alexis and Zach's page AND to Baby Zane at 40+ weeks.

We are still waiting to find out the date to move down to Children's house at Baylor.

Aunt B brought us chicks for Easter so does anyone have a farm?

Aunt B also brought us carpet for our up stairs so does anyone install carpet?

Love, Pam

 

March 24, 2005

Zane is still doing great! Today I feed him a little applesauce.

The nurses and therapists kept telling me that with babies that have been incubated as long as Zane has, he might not like anything around his face for awhile... MEANING no nursing, no bottle feeding, etc... They said that a lot of babies start gagging the closer you get to their mouth and nose.

The occupational therapist "played" with him today. She rotated his legs, worked on his head balance and neck muscles, and showed me how to start introducing "good" stuff to his mouth. We started by just putting a little applesauce on his lips and let him lick it off. Then we would put a little more on his gums and so on. It wasn't very much at all but it sure was fun!!!

The surgeon finally changed the trach. NOW we are waiting on the home ventilator. Zane has to be pretty stable on the home vent for a week or two before we are moved down town. Oh and we have the feedings down to 1 hour eating and a 2 hour break. Everything is looking good!!

 

March 19, 2005

Hello, ALL!!!

Zane is doing very good.  They have not made any changes to the ventilator in the past week.  The home vent should be in next week.  Once we are stable on the home vent, we can move to the Garden Room, which is still in the NICU but more of a private room.  Trent and I would be able to stay (even though we really can’t with Lex and Zach) AND he wouldn’t have his own nurse watching him.  One nurse watches six rooms at a time, so of course he has to be VERY stable to be moved to the Garden Room. 

I spoke with Dr. August yesterday about the projected “coming home” date.   I talk to her quite a bit so she knows all my concerns.  (My house isn’t ready, Medicaid stops, I am scared, Home nursing, ect…)  She said that there are probably more reasons to keep him at the NICU longer than there is to move him down to Children’s House at Baylor.  This will allow us to procrastinate a little longer on the house, keep Medicaid, set up the home nursing, get him off some of the medications (It would cost us a small fortune to pay for them all!!!), etc…  She made me feel much better.

He is now eating three hours worth of food over 90 minutes.  He weighs 7lbs 6oz.  The surgeon STILL has not come to change out his trach. 

Talk to you soon.  Pam

 

March 17, 2005

Hello everyone!

Zane is doing great.  He is such a cutie!!! 

We are working on eating.  For the last 4 months Zane has had continuous feedings.  They have a little machine that slowly puts the milk in through his feeding tube.  NOW he gets three hours worth of food over a two-hour period with an hour break.  The goal is to be able to dump all the food in at once. 

We are still waiting for the surgeon to come change out his trach tube.  It is sutured to him and the surgeon has to do it the first time.  After that we do it once a week.  Once that happens Dr. August wants to start trying to feed him a tiny tiny bit through his mouth.  VERY EXCITING!!!

Vent is the same and oxygen is below 40%, which is right where we want it.  I think that is about it. 

Have a wonderful weekend!!    Pam

 

March 14, 2005

First I want to thank all the women that kicked Trent out of work Friday afternoon.  We went to see Million Dollar Baby which was VERY good and then out to eat.  : )

Zane is doing much better today.  His blood gases are good and his oxygen is down.  YEAH!!! 

I spoke with the Pulmonaligist (Lung Doctor) today and he wants to stay in the NICU for another 2-3 weeks and then move down to the Baylor Children’s house.  This is where we would learn how to work on the trach.  He said the “smart” people stay there around 4-6 weeks to learn everything.  The “dumb” people take about 3-4 months.  I guess we will see which group we are in.  HEHEEEE  (I really enjoy doctors that don’t take everything so seriously and have a sense of humor.)  

That is the plan for now but as you know it is always changing!!!

I will talk to you soon.   Pam

PS-OOOOO I almost forgot!!!  I held him today.  I LOVE IT!!

 

March 11, 2005

I was so ready for a constant improvement now that all the surgeries are done.  Unfortunately we are still on the rollercoaster.  Zane had another Brady attach night before last and it took about 10 minutes for them to get his heart to beat at a good rate.  Yesterday and today his O2 is very high and his CO2 is not the best.  Dr. August turned up his ventilator up again today.  It just makes me very sad.  

Plus!!!  My Lexie and Zachy are in Abilene giving all their lovins to Grandma and PaPa.  AND my Trent is at work and won’t come home and his Dorothy is probably getting sick of me calling to ask him when he is coming home.  SO if you work with him, please send him home.  I am lonely!!!

Thanks for joining my pity party today!  :)   Pam

 

March 9, 2005

Yesterday was Zane’s four month birthday.  Can you believe that?  Incredible!  Zane is the oldest baby in the NICU but according to Dr. Green, he is still the sickest.  He is also predicting that Zane will be coming home in 4 to 6 weeks.  Crazy man!!!

Zane is wonderful.  I can’t wait to start holding him again.  They started him back on milk today.  Otherwise I am so very happy, scared, nervous, and excited at the same time.

The NICU has sign up sheets for CPR for anyone that would like to take it with me.  I actually might take it a couple of times.  This month they have it for March 13th and 22nd.  If you want to take it, just email me and I will sign you and/or spouse up.  

Love you all!  Pam

 

March 8, 2005

Zane looked SOOOOO good last night.  When Grandma and I got there last night, he was wide-awake checking out the little toy Faye (primary night nurse) hung from the bed.  It was so wonderful.

Our blood gases are SOOOOOO much better.  They are better than what they have been in a long time.  YEAH!!!

Everything was great last night except when he kept Bradying (His heart rate drops very low.)  Faye told me to run find a Respiratory Nurse because his vent kept sliding off his trach.  I ran next door…  No green clothed nurse.   I ran past the our room to the room on the other side… Nothing.  I ran to the blood gas room…UGGGG.  I ran back past the room AGAIN to the front desk because there is some one ALWAYS at the front desk… GOD IS NOT FUNNY!!!  In the farthest room on the tallest mountain in the tallest tower, I found TWO!!!  They fixed him all up but we had a good laugh at Pam searching for her cheese.

Have a wonderful morning.  Pam

PS-I am taking Grandma and the kids half way to Abilene today.

 

March 7, 2005

Poor Little Zane!! 

Actually he isn’t so little any more… 7lbs!!  He is bigger than what Lexie and Zach were.  He just looks so big and strong to be struggling so hard to breathe.  His blood gases are not so good.

I am headed to the hospital now.

Pam

 

March 5, 2005

Zane had a hard night.  I called at 4am for the results of his blood gas…Not the best.  Dr. Reddy (the night doctor) called at 7am to let know he had a rough night.  He is still in a lot of pain so they increased his morphine.  Blood gas at 9am was still bad so they increased the settings on the ventilator.

Did I explain that to everyone before?  They did this trach so that he can stay on the ventilator for 6 months to a year. This will give him the freedom to move around and eat without worry of pulling the tube out.  He also has NOTHING in his nose or his mouth!!!  NO TAPE!!!!

Sorry back to the problems…When I called just now, they were putting an arterial line back in.  Do you remember what that was?  It was a line that they could constantly monitor his blood pressure and draw blood out of.  (YEAH! They don’t have to keep sticking his poor little heals.  I hate that!)  (BOO!!! I can’t hold him with that in BUT hopefully he won’t have it long.)  Blood gas at 10am was the same so we will get another at 1pm.  UGGGG!!!

Poor little guy!

 

March 4, 2005

We made it!!!  Everything is done and Zane came through with flying colors.

He is in a lot of pain but they are trying to keep him sedated and “morphined”.  He had three Xrays today that didn’t look very good.  His lungs are very cloudy but it is probably fluid.  We had blood gases at 6, 7, 8, and 9 o’clock.  None of which were very good.  We get another at 4am. 

Thank you for all the prayers and phone calls!!!  Thank you Tracey and SheShe for keeping the kids.  Thank you Jen and Talley for taking off work to sit with us.  (You made it SOOOO much easier!!!)  Thank you Steph and Tiffany and Lucy for coming to see us.  I am sorry, Bill, that we missed you.

I am going to bed!!!  Pam

 

March 3, 2005

10:30 tomorrow morning!!  Zane will have 5 procedures. 

   1. Trach  

   2. G tube (for feeding)

   3. Nissen (help his reflux)

   4. Hernia

   5. Circumcision

I believe this is the order they will do them too.  If at any time he starts to do bad, they will stop.

I didn’t get any questions back from anyone so I guess everyone understands everything.

I need volunteers to keep the kids!!!!!

Friday morning  (tomorrow!)

Friday afternoon: Shirley

Then I need all of next week since Sunshine school has spring break.  (I am so glad Kristen told me today because otherwise the church office would have havoc with Alexis and Zach!)

Very nauseous! Pam

 

March 2, 2005

What a day!

Trent and I talked with the all doctors and therapists in our conference for over an hour.  We are all in the agreement that a tracheotomy is the best thing for Zane.   They are trying to schedule it for Friday but it is not definite yet.  One thing that was stressed to us is to be prepared for the worst.  I took Zach’s favorite saying at that moment… “NO!”

Trent is leaving for a business trip on Sunday but will be back on Monday LATE.  SO I hope we can do this before or after because I don’t want to do it without him!!!! 

It will take him about 3 weeks to recover from all his surgeries and another 3 weeks to 2 months to train us on the trach.  He will then come home to a 24 hour nurse for a little while depending on what insurance will allow. 

I can’t think of any thing else you might ask.  Please email me your questions and I will answer them in tomorrow’s update.

I am trying to take one day at a time because it is too over whelming to look too far ahead. 

Love, Pam

 

March 1, 2005

Tomorrow is our conference #2 with everyone (3 doctors, nurse, respiratory therapist, social worker, occupational therapist, etc…).   From what it sounds like they are going to want to do a tracheotomy. 

Trach pros:

Trach cons:

There are a few other surgeries that will need to be done probably at the same time of the Trach.

  1. Trach

  2. G tube (feeding tube that will go in his side.)

  3. Nissen (this surgery on his stomach that will help his reflux)

  4. Hernia

  5. Circumcision

I should have more answers tomorrow after the meeting.   Pam

 

February 27, 2005

This is the last day of steroids unless they decide to extend them tomorrow.  He is still doing OK.  His blood gas went up a little yesterday and back down today.  The real test will be in the next couple of days to see how he does off the steroids.  

Trent and I have really tried to keep everything fairly “normal” for Alexis and Zach since Zane has been born.  We thought we were doing a pretty good job until a couple of days ago.  One of the groups at church is bringing us food.  I hate to say who it was because I don’t want to embarrass her (Courtney Cartwright).  She (Courtney Cartwright) brought us food and she (Courtney Cartwright) went ALL OUT!!!!  There was ham, green beans, potato casserole, rolls, AND strawberry shortcake.  Alexis walked into the kitchen and said “MOMMY!!!  YOU COOKED???  How did you do that?”.  I sheepishly said “no, not really.  I heated it up.”   We all sat down at the table and my lovely daughter popped up again and said “This isn’t pizza!?!” UGGGGG!!!   THEN Zach proceeded to eat more than anyone at the table.  I guess it had been awhile that I made a sit down meal. 

(Thank you, Courtney!!  I hope I didn’t embarrass you!)

I will update you if anything changes.   Pam

 

February 24, 2005  PM

I just called to find out how his blood gas was and he is currently getting a bath.   HEHEEEEEHEEE 

Obviously his blood gas was good or they wouldn’t be giving him a bath.  YEAHAAAAAAA!!! 

  Pam

 

February 24, 2005  AM

STILL OFF THE VENT!!!!! 

Blood gases are getting better and oxygen requirements are at 50-55%.  (Yesterday it was 70%)

Hang on for Zane’s rollercoaster ride.

Pam

 

February 23, 2005

Poor Little Zane!!! 

The doctor wanted to put him back on the vent this morning.  He was working hard and his oxygen requirements were very high.  BUT the nurse and I kept talking them out of doing it.  (3 times today!)   His CO2 is finally coming down but barely.  I have been living blood gas to blood gas today... 9am, Noon, 3pm, 9pm and next is 4am.    I hope I won’t be awake for the 4am one but I was last night.

Please say a little prayer or maybe a big one.  I figure if I keep pestering, God will give in.   

You like my strategy?  

Pam

 

February 22, 2005

Zane is OFF the vent.  Maybe the third time is the charm.  Today is his last day of full steroids and tomorrow he will start weaning which will last till Sunday.  He is happy only when he is sleeping for some reason…???  They are having to sedate him so he will calm down.  His little cry is VERY cute though!!! 

I have had several people ask why we are getting a new doctor.  It is because there is a team of neonatal doctors that go to several hospitals.  It is a good thing because we get the knowledge and opinions of ALL the doctors.  It is a bad thing because we have to let go of the doctors that we really like and get to know.  They usually do a 4 to 6 weeks at a time. 

OH we are probably having another formal meeting next Thursday to discuss everything… steroids, ventilator, trach, surgeries, home, etc…

Love, Pam

 

February 21, 2005

Zane is still on the vent.  They weaned him more today.  I think they want to get him as low as possible before pulling it out.  We have another blood gas in the morning but it might even be Wednesday when they do it.  This week is a transition week with the doctors. We will have 3 different doctors just this week before we get a more permanent one the following week.  (I hate the timing!!!)  AND I don’t know any of them!!!   It is hard to know what they will do. 

I will talk to you soon.  Pam

 

February 19, 2005

Good Evening! 

Today is day two of ten for the steroids.  Zane really enjoys his steroids.  As of tonight, his rate is at 14 and his oxygen is in the 30s.  Both are right where we want them to be able to pull him off the vent.  Now we just need to lower his pressure a little.  Dr. Green thinks it might be Monday when we pull him off and put him on the Cpap.  He is not very optimistic about him staying off the vent without the steroids.  He is thinking that we will have to start seriously discussing doing the tracheotomy.  This will allow him to move around like a normal baby which he badly wants to do.  Currently he has to be wrapped up tight so he can’t pull his tube out.  They even have to restrict his head movement.  The trach might allow him to come home earlier also.  (It is very scary to think about him with a trach at home with ZACHARY!!!) 

It is a lot to take in.  It makes me very nervous to think about but I am trying VERY hard not to worry about it right now.  I know if he brings me to it, he will see me through it.  One day at a time. 

I would like to have some pictures taken of him before he gets too big, before the trach, but during the steroids.  Maybe some Anne Geddes like pictures if anyone knows anyone, let me know.

I will email you tomorrow.  Pam

 

February 16, 2005

Hello, ALL!!

Zane is feeling better…No more fever.  So far all the tests and cultures have come back negative.  We are waiting on one more and if all is well, we will start 10 to 14 days of steroids on Friday.

They did an echo gram of his heart to make sure the last round of steroids hadn’t effected it.  It was fine.   

The xray of his chest today showed that he might have a couple of cracked ribs.  His bones are very fragile.  (That is also a side effect of the steroids – weak bones)

I believe that is all.  Talk to you soon.  Pam

 

February 15, 2005

Hello All!!

I just got home and got a call from the hospital.  Zane has a fever.  They are doing all the blood cultures etc… to find out what is going on.  This does push back the steroids for at least a couple of days until he is free from infection.  (Remember that steroids make it hard to fight infection so they won’t risk it.)

I have had a request for the story of the middle name now that you know that Zane was decided on in my drug induced state in the delivery room.   I came up with the first name and Trent did the middle name.  I believe it was the day after Zane was born and I was still spinning from the magnesium.  BUT from what I remember, Trent walked into my hospital room and said I want it to be Zane Isaac.  I started running through my mind of who in the family has the name Isaac…????    He said “Isaac was Abraham and Sarah’s miracle son that God spared.  Maybe he will spare our little miracle son also.”  

I will email when I hear anything.  Pam

 

February 14, 2005

Sorry to get everyone’s hopes up, but Zane is back on the vent. He just was working too hard at trying to breath. AND they didn’t want him to burn off that extra pound we just worked so hard to put on him. Dr. Green is back tomorrow so we will start steroids this week sometime.

I held him extra long for everyone and gave him extra kisses.

Talk to you soon!  Pam

 

February 13, 2005

Hey everyone!

Today is Zane’s due date.  14 weeks ago I was on my way to see my sweet baby in a scheduled sonogram.  I knew at 18 weeks he (which we didn’t know that he was a “he”) measured exactly 18 weeks and at 22 he only measured 21 weeks.  The doctor scheduled another sonogram at 26 weeks to make sure he was still growing like he should.  We weren’t worried at all … in fact we were excited to be able to see him again via sonogram.  I called my sister on the way to share my excitement.  “I am going to see my baby!!!”

We got into the office and proceeded with this level 2 sonogram.  Dr. Pedron is a chatter box.  He talks non stop about his 15 kids (not really 15 but it was a lot of kids and most of them were boys so I felt very sorry for him) and he wanted to know all about our other two kids.  Once he finished measuring, I knew exactly where to look to see how many weeks.  23 weeks!!!   My heart sunk, but I am sure he just measured wrong.  He started over and this time Dr. Pedron was dead silent.  We watched him measure and re-measure in silence.  

He finally spoke up and said “we have a problem”.   He had a list of things wrong… my blood pressure (of course), blood and oxygen flow to the baby had pretty much stopped, yada yada yada, I was admitted to the hospital. They took my blood and gave me the steroid shot.  I still was not TOO worried because I had been in the hospital several times with Lexie and Zach.  I called Debbie (my sister) again and said “OK… I am now in the hospital but probably just for the night.” 

Dr. Pedron doesn’t deliver babies any more, and Dr. Simmons is his partner so he takes over from here.  My blood work discovered that my liver levels were high and my platelets were low.   Dr. Simmons said we need 48 hours for the steroids to work.  WHAT???  48 hours?  I will sit in this stupid hospital for 3 months but you are NOT taking MY baby before that!!!  They drew more blood to recheck everything.

Trent took the kids home where they stayed with “Always there for me” Talley.  He packed us a bag since I might be a month or two in the hospital.

I called my poor sister again and said “they are trying to hold off taking the baby for 48 hours. Please call everyone.”  I am starting to panic now… : )

Dr. Pedron called me and said that Dr. Simmons called him with the results of the 2nd blood work.  It was worse. They were in agreement that they needed to take the baby right away.  I tried to speak but I couldn’t… My poor baby didn’t have a chance… I knew he didn’t weigh more than a pound and a half from the sonogram.  I tried so hard to breath so that I could talk.  NOTHING!  Dr. Pedron said “Pam, take your time.  I want you to know that if this was my wife and my baby, I would deliver right away.  If you don’t, you both might die.”   I thought of Alexis and Zachary.  I thought of the picture in Dr. Pedron’s office of a Surgeon working on someone and Jesus was behind him guiding his hands.  I finally managed “OK”.  Dr. Simmons was on his way back up to the hospital to deliver my little baby. 

I hung up the phone and the nurses immediately came in to get me dressed.  I called Trent as they were wheeling me out.  I prayed to God that he would hurry.  I then called POOR POOR Debbie and said they are taking the baby.  (of course she still hadn’t called anyone because she couldn’t stop crying.  UGGGG!!  Scotty ended up having to call.)

I got down to the holding room where Prayer #1 was answered… Trent showed up. And within minutes the phone rings.  It is my mom.  Somehow Mom’s always know where to find you.  Somehow Mom’s always know what to say.  It is truly amazing!!!

The nurses prepped me for the c-section and started the ever dreaded Magnesium drip on me.  It all seems like a blur now but I remember that Tory showed up shortly after Trent did (and he lives twice as far).  I remember Talley coming into what seemed a very tiny room for so many people to be in there.  WAIT!!!  Who had the kids???  Jennifer said that she would keep them so Talley could come up.  BUT when it came down to it, Jennifer’s husband had to keep the kids because Jennifer couldn’t wait at home either. 

Once again I was wheeled away without my husband.  He had to get scrubbed up or something.  Dr. Simmons who I just met a few hours ago did not let go of my hand until Trent showed back up.  He was even with me for my spinal tap and while they strapped me down.  This is not something I wanted to do especially without Trent. 

Trent sat down next to me and said “I told you we should have figured out names!!!”    ?????    Names were still not even a worry for me.  I said if it is a girl, it will be Hope or Faith.  If it was a boy, his name would be Zane.

Zane was born in a totally different manor than we could ever have imagined him to be.  I wanted to see him, but when they passed by he was so little I couldn’t see.  I remember a nurse saying “Pam, you will see him later.”   I knew it was not good.

From here, it is all a blur.  I don’t remember Trent leaving me at all but he said he went with Zane up to the NICU.  He waited up there for 45 minutes to hear that his son was alive.  The nurses still talk to me about that night and how they watched Trent pace. 

I don’t know how … that is not true.  I do know exactly what kept my sweet little angel alive… all your prayers.   Prayers from his mommy and daddy, from all his aunts and uncles, definitely from all his grandmas and grandpas, from all the friends in the waiting room, from everyone.  Thank you for my son.

OH … Zane is 5lbs AND as of tonight he is off the vent.  Answered prayers #463 and #464. 

I love you all!  Pam

 

February 11, 2005

Zane is hanging in there.  For the last 4 days he has come down on the ventilator by 1 each day.  He is now at a rate of 26.  He was on a rate of 22 when he pulled his tube while on steroids.  Oxygen is still in the 50% range.  I believe we will start steroids again next week sometime.

His eye exam went fine.  His next exam is in 3 weeks. 

If anything new happens, I will let you know.   Pam

 

February 7, 2005

Zane is doing about the same.  His ventilator settings are still very high.  They are actually higher than what they were before we started the steroids.  Hopefully we have hit a plateau and he is all rested up, then we can start the downward trend again!!  

He has an eye exam today.  I should have the results for the next update.

Thank you, Talley, for the blood that he is receiving today.  That will probably earn you one more Zane hold but it just might get you another “Talley-Hater”.   : )   The list is growing fast!!!

I will talk to you all soon!!  Pam

 

February 4, 2005

Zane went back on the ventilator last night.  He is currently resting nicely.  The game plan is to let him rest and grow bigger for about a week or so.  THEN we will probably try more steroids. 

He did not gain any weight and actually lost some through this week of steroids.  He just had to work so hard to breathe that he didn’t have any left over to grow. 

Here are all his stats…Weight: 4lbs

Birth weight: 1lb 4oz

Age: 38 weeks but 12 weeks old

Due date: February 13th.

Born:  November 8th

NICU: 88 days

Does it feel like we have been together for 12 long weeks?  To me it has gone by so fast, but at the same time it feels like ages ago that it all happened. 

I was in the break/waiting room at the hospital and I was listening to a couple of ladies complain that they sick of being in the NICU and driving back and forth.  They were going on a 7 days and might be a couple more days.  They have no idea how really blessed they are.   My advice for the day is to look around before complaining to make sure there isn’t anyone that is worse off than you that might be eavesdropping.

Love, Pam

 

February 3, 2005

I hate these updates compared to the ones earlier in the week.

The steroids have worn off, and Zane is dwindling fast.  He went back on the Cpap this morning, and I bet he will be back on the ventilator by the end of the night.  He is breathing pretty hard and his oxygen is in the seventies.  Neither is good.  They are taking a blood gas every two hours which means they are pricking his heel every two hours to take blood.  His CO2 levels in his blood are high also. 

I will email when I hear anything.    Love, Pam

 

January 31, 2005

Zane is doing great!!  The last dose of steroids is tonight.  The doctor said that Zane will probably regress for 3-7 days.  How much he regresses is the big mystery.  Hopefully he will  stay just on only oxygen.  He could always go right back to where he was when we started the steroids… on the vent.  More than likely he will end up some where in between… like the cpap.

Tonight the nurse pointed out that he has a dimple… just like Daddy and big brother!!!   I LOVE IT!!!

Have a great week!  Pamela

 

January 30, 2005

HE IS OFF THE VENTILATOR!!!  He is only assisted with a little oxygen but otherwise he is breathing on his own. 

They did warn us that he could regress once he is off the steroids.  Tomorrow is the last dose. 

He had a fever last night but right now he seems to be OK.   Love, Pam

 

January 28, 2005  10:30pm

I am sorry but I had to write just one more time tonight.  I heard his sweet little cry for the first time tonight!!!  I have been waiting for this moment.  I am so happy, terrified, excited, nervous, and nauseous at the same time.   

Zane is doing good.  His blood gas at 9pm was very good and he gets another at 4am.

Good night!  Pam

 

January 28, 2005  4:45pm

Alright, Zane pulled his ventilator tube out this morning.  SO they went ahead and put him on the Cpap to see how he does.  So far so good.  He had a blood gas at noon and it was great. 

He might get fatigued and have to be put back on the vent, but only time can tell. 

They don’t want us to hold him for a few days to let him rest.

Talk to you soon.   Pam

 

January 28, 2005  11:00am

Good Morning 

This past week the ventilator settings have been creeping back up; therefore, yesterday Zane started his first of five doses of steroids.  There are several risks like Cerebral Palsy, slowed brain growth, and infection.  We do not know how well the steroids will work on Zane, but the goal is to get him off the ventilator.  The next step is C-pap which will still give him some support. 

So far there has not been any change on the vent settings. 

I will try to send a daily email this week to tell you of his progress.

Please keep Zane in your prayers.  Pam

 

January 24, 2005

Hey, everyone!!! 

Zane is at a stand still at the moment.  They had to turn up his ventilator just a little yesterday and there were no changes today.  Hopefully we will start the trend downward again.  I want him off  the stinkin’ machines, but on the other hand it is very scary.  It is nice to know that when he falls asleep and stops breathing, the ventilator will help him out a little.  

He is 4lbs!!!  HUGE!!!

Trent and I had a retreat with our church class on Saturday.  (We had such a good time!!!  I love this class!!!)  The Brown’s kept the kids for the weekend so that we could go.  Talley is going to Abilene tomorrow and bringing them back Wednesday.  I sure do miss them. 

Have a great week! Pam

 

January 21, 2005

Hello Everyone!!

Zane is continuing his good behavior. He is in a crib now. (He doesn’t need the heating lamp because he is able to maintain his body temperature.) His ventilator settings are being turned down everyday. By my calculations he should be off the ventilator in less than two weeks!!! I did verify these results with Dr. Minnich and she did agree with them. Today the doctor turned several settings down so we will see how he does with all the changes.

I have lots more pictures that I will try to get on the web site tonight: Aunt Talley holding him for the first time, his crib, new outfits, etc…

Talk to you soon.   Pam

 

January 16, 2005

Zane is doing awesome!!! 

He is on room air oxygen. He weighs 3lbs 10oz.  I have been able to hold him for hours at a time everyday except on Saturday.  Saturday Trent held him for the first time. 

It had to be better than me getting to hold him.  I didn’t think that could be possible.  The love that I saw when they laid Zane in Trent’s arms was incredible.  He is such an amazing man and father.   I don’t think God could have sent me a more perfect family. 

Have a great week!  Pam

OH!!!  Zane can wear clothes now!!!  Not that we have any that small but we tried…

 

January 13, 2005

No bad news tonight.  (When I call anyone now a days, I have to start the conversation with “Nothing is wrong”. ) 

Zane is doing much better.  Tuesday after “the incident”, Dr. Minnich stopped all his milk.  She thinks it is reflux that might be causing all the trouble.  Today they decided to bypass his stomach so basically they put his tube farther down. The milk doesn’t even go into his tummy in which it can’t come back up and cause problems.  We are slowly getting back to the amount we were eating before. 

OK we are now getting to the good stuff!!!

Zane and I did our first “kangaroo” today.  For all the fortunate people that have never had the pleasure of being in the NICU, this means holding your baby skin to skin.  I was able to hold him today for two whole hours.  It was wonderful.  I have new pictures on the web of it.  Click here to see!!!

Have a great weekend.  Pam

 

January 11, 2005

Zane Isaac Brown!

This will be a day that I will not let him live down! 

I dropped Alexis and Zach off at Mother’s Day Out and went to the hospital.  I walked into Zane’s room and the nurse and doctor were standing over him.  He was Brading (where the heart rate drops way down).  They already have been shaking him and started to bag him to get him back going.  This is the same thing that they did yesterday and bagging him would work.  Today it didn’t.  Dr Minnich started manually pumping his little chest.  Zane threw up all his milk.  His ventilator tube came out.  I really don’t know what order it all happened in and it was all happening so fast.  Dr. Minnich yelled for help which set off the “Code Blue”.  They  had to give him CPR.  He turned all shades of purple and gray.  It was horrible. 

He is doing alright right now.  He is still acting funny.

Stephanie and Erica took the kids to She-She’s house for me after MDO and then Talley is going to keep them for the night.  I really don’t know what I would do without all you people!!!   

I came home to pack a bag and eat but I am headed back up to the hospital.

Pray!! Pray!!   Pam

 

January 9, 2005

UGGGGGG!!!  I have FINALLY figured out how to work this web site. It only took me a week and countless calls and emails to Stephanie, Sean, and Matt. AND I think I will be in bed tonight before 2 AM.  Isn’t that great?  So there are more pictures of Zane.

AND I have even better news!!!  Zane has been moved to the conventional ventilator!!!  It allows him to breath like the rest of us with big breaths.  The other one just held his lungs open and puffed air into them.

I am going to bed!!!  If anyone needs me tomorrow, I will be at the hospital holding my sweet sweet baby.

Good Night!   Pam

January 8, 2005

Zane is two months old today!!!  I can't believe he is that old but at the same time it seems like forever ago that all this happened.   I want to thank everyone for being such a support to us.  Right when I start to think that my emails are getting old or I might be annoying everyone with my silliness, someone says I am not sending out enough updates.  I never feel alone in this for very long.  I get an email of encouragement with every update from several people  which brightens my day every time!!!  (Thanks ~ Ann, Gran, & Katie)

Trent and I had the "official" meeting with all the doctors, therapists, and nurses.  They listed out all the things wrong with Zane.  

  1. Lungs, lungs, lungs.  He might have to come home with a ventilator and/or a Trach.

  2. He has a hernia which will be one surgery before he can come home.

  3. Kidneys - urine might be going the wrong way (not for sure on this but can run a test later) which he will have to take some antibiotics when he comes home.

  4. Talked about down the road when he is home about what he is high risk for i.e... Cerebral Palsy, vision problems, etc...

Do you see the common thread in all the above?  HOME!!!  It is so wonderful that they talk about home because before they were very careful not to mention it.  

The mean on the ventilator is down to 32 today.  It has to be in the 20s to be moved to the conventional ventilator.

Love, Pam

 

January 5, 2005

Oh, what a beautiful mornin',
Oh, what a beautiful day.
I got a beautiful feelin'
Ev'rything's goin' my way!!!

I HELD HELD Zane yesterday!!!  It wasn’t at arms length just to change his bedding.  I held him to my body and it was the most awesome day.  I was so nervous like I hadn’t ever held a baby before.   I have waited for two months to get that little boy in my arms.  I was finally going to get to do it.   I called Trent and then I called Talley so she could get up there to take pictures.  (I think she almost had three wrecks trying to get there in time.)   The nurse wrapped him up tight in a blanket that weighed more than he did and laid him in my arms.  I had the nurses taking pictures and Talley taking pictures.  The respiratory nurse was holding the ventilator tubes trying to stay out of the pictures. 

Zane’s milk is up to 28cc every three hours.

Ventilator settings:

            Mean 15

            Amps 36

            Oxygen 30-40%  (room air is 21%) 

He did not grow or gain any weight from last week.  He is still 3lbs and 14in

I will get the pictures on the web of me holding him but I can’t right now.  I am going to the hospital to pester the nurses and the doctors and anyone else to let me hold him again.

Oh, what a beautiful mornin',
Oh, what a beautiful day.
I got a beautiful feelin'
Ev'rything's goin' my way!!!

(Sorry, all you Oklahoma fans out there but this is the song I have in my head.)

Love, Pam

 

January 3, 2005 

Happy New Year!!

Sorry it has been so long since I have written an update.  Here is this week’s update summary:

Tuesday, December 28th – Ventilator setting were all still very high.  Oxygen was around 60-70%.

Wednesday, December 29th   - Dr. Green talked to me about using steroids.

Thursday, December 30th – I changed Zane’s diaper and he pooped all over his bedding.  I got to hold him up while the nurse changed the blankets.  It was VERY exciting.  I talked with Dr. Green again and he wanted to discuss the steroids with Trent.

Friday, December 31st  - Trent and I went in to have the “steroid talk”.  ALL of Zane’s ventilator setting had gone down.  It was incredible!!!  Oxygen was even down to 30%.

Saturday, January 1st  - Zane was still doing great.  He moved to a room that has a little more privacy and a lot quieter.  He also had his arterial IV taken out.  He is almost wireless!!  Jennifer (one of his primary nurses) let me hold him up again while she changed the bedding.  OH and I kissed his little cheek and I just wanted to eat him up.  He is so sweet!

Sunday, January 2nd (Alexis’ 4th birthday) – Ventilator setting went up a little but not too bad. 

Monday, January 3rd – 8 weeks old (or 34 weeks gestational age) 

(Future)Thursday, January 6th – We have a formal meeting with the doctor, social worker, nurses, respiratory therapist, etc… to discuss Zane’s progress and goals for the future.

He is still right at 3lbs.  

Have a great week. Talk to you soon.

Pam

 

December 27, 2004

Hello Everyone! 

Zane is doing about the same. 

Bad news:  His ventilator is still very high AND I still can’t hold him.  

Good news:  He is officially 3lbs 2oz AND 14 inches!!!!  He is HUGE! That is a long way from 1lb 4oz and 10 inches.

Please keep praying for his lungs.   Pam

 

December 25, 2004

Merry Christmas!!!

Zane is doing great.  He is now at his maximum feeding which is 20cc every three hours.  Our goal is to have him off of any food through the IV.  The ventilator is down a tiny bit.  I gave him extra kisses from everyone tonight.  He is so sweet.

We had a great Brown Christmas.  (haha)  Alexis and Zach got way too many toys that we can’t keep up with.  Grandma and Grandpa gave them a little kitchen in which Zach likes too much.  I got my Seinfeld DVDs so I am very happy.  Lex and Zach went home to Abilene with Grandma and Grandpa, so Trent and I got to spend the evening with Zane.  BUT we were able to take a break and go see Ocean’s Twelve. 

I love you all !!!   Pam

 

December 23, 2004

Happy Festivus!!!!

Little Zane is now eating 17cc of milk and tonight he will at 18cc.  They give it to him over a two hour period so it won’t all be dumped into his tummy at once. 

Dr. Minnich talked to a pulmonologist (specializing in treatment and diagnosis of conditions associated with the lungs and breathing) and he thought maybe Zane has some reflux.  I am not sure what all they will be doing for this so I will report back when I find out more.

Zane had an eye exam yesterday.  His eyes are two weeks more premature than gestational age which goes along with his physical exam and the last sonogram the day of his birth.

Have a wonderful Christmas!

Pam

 

December 21, 2004 at 9:18pm

I am so ready to hold him!!!!  I want to scoop him up and squeeze!!!
Unfortunately the nurses keep telling me "no".  

Zane is behaving himself.  His CO2 levels are up and down and his ventilator
settings are back up.  BUT that is OK, because he is now eating 17cc every 3
hours.

Other than that, there isn't much to report.  

I hope everyone has had a chance to go to his website at www.ZaneIsaac.com

Have a great Christmas!
Pamela

 

December 19, 2004 at 9:56pm

Hello, EVERYONE!!!

* Zane had a little episode today.  His heart rate kept dropping (A&Bs
or Brading) and then he threw up his milk.  The doctor took out his
ventilator tube and replaced it with a bigger one because he has grown so
much (see next bullet).  He is doing OK now but he likes to have drama on
Sunday's for some reason.
* He is 2lb 6oz!!!!!  CAN YOU BELIEVE THAT???  I made the nurse check
again because I couldn't believe it!!!
* Zane is now up to 13cc of milk every 3 hours.
* The website is so close to being complete but you can check it out.
www.ZaneIsaac.com   Stephanie French and Matt
Miller have worked VERY hard on it.  I am so excited to hear what you think
about it.

Pam

PS - Kate, Thank you so much for the picture you made for Zane.  We taped it
up next to his bed so he can see it. 

December 17, 2004 at 10:00 p.m.

How are you liking this roller coaster ride?

I hate to say that Little Zane is doing beautifully. Because the minute I say that, I will get another call from the hospital. Instead I will say Zane is being such a good little boy today. His CO2 levels are back to being normal!!! (Answered prayer #58) He is eating 9cc every 3 hours AND they are increasing it by 1cc very 12 hours. YEAH!!!

Please keep your hands and feet in the car at all times!!!

Pam

PS – THANK YOU Talley for everything!!! (Sister-in-Laws are so sensitive!!)



December 16, 2004


It was a long and hard night for little Zane. His CO2 levels in his blood are very high which can cause brain damage. His lungs are so damaged that they are not able to work properly. The ventilator settings have to be turned up so that it can help the lungs BUT at the same time it is hurting them. (I hope I am not confusing everyone but it is a big circle.)

Trent and I want to thank everyone who came up to the hospital last night and sat with us. One group left and another one came. You really lifted me up last night. Laughing is the best medicine for me and I got some good laughs last night. Thank you for your support because you are what keep me strong. You are amazing people!!!

Thank you Chris and Jennifer for letting the kids spend the night.
Thank you Shirley for getting up so early to let Chris drop the kids off at your house.
Thank you Nicole for picking up my kids and taking them to Sunshine School.
Thank you Ms. Leslie for doing whatever you do because Alexis loves you.
Thank you Nicole for driving them back to Shirley’s.
Thank you Shirley for loving them so much!!
Thank you God for such wonderful friends who would go through all this trouble for us.

Love, Pam!

PS- Oh! Thank you Anne for my Cherry Lime (with a bow) this morning.



December 13, 2004


About a week ago Trent talked to the doctor about using steroids on Zane to help his lungs. The doctor said there are several side effects (like stunted brain growth, hard to fight infection, etc..) and steroids are used as a last resort.

Yesterday, the doctor approached us about starting the steroids. Zane’s ventilator settings are not getting any better.

Hopefully the steroids will allow them to lower the settings and his little lungs can grow.

Love,
Pam

December 11, 2004

Good Morning!!

Pray for Little Zane’s lungs to grow bigger and stronger. The doctors are very concerned since the ventilator settings are so high. We need to wean him off so that the ventilator does not damage the new lung tissues that are trying to grow.

Through the night, the nurse was able to turn some of the settings down.

Here are today’s settings on the high frequency ventilator for all you medical people out there:
Mean 16
Amps 32
Oxygen 50-60%

I do not know what the full purpose that God gave me Zane when he did. Maybe it was to show us how incredibly strong and weak Trent and I can be. Possibly it was to show us how many people (a lot that we have never even met) care and love us. AND it was to teach us how to be the same to others. Perhaps it was to teach us “if God brings us to it, He will see us through it”. (Thanks, Gran!) It could be that He wanted us to know how important a church family is.

Definitely it was to teach us the power of prayer!!! So pray pray pray for his little lungs.

Love,
Pam

Isaiah 11:6 “…and the child shall lead them.”



December 9, 2004


Third time is a charm, right???

Zane started eating AGAIN yesterday. 1cc every 6 hours and today he is eating 1cc every 3 hours. Hopefully he will keep his blood pressure up enough to keep eating.

One of his doctors showed me X-rays of his chest this morning. The first one was when he was born a month ago (Yesterday was his “Month Birthday”). I could see his lungs which were distinct dark ovals. Then she showed me his lungs now on the x-ray. I couldn’t see any dark ovals.


There is no special treatment for this. Most often the damage in the lungs improves with time so patience on the part of everyone involved is essential. (I am struggling with the patience part!!) Oxygen, even though it is toxic to Little Zane's lungs, must be supplied through the ventilator since he cannot breath on his own. Good nutrition must be maintained so he can grow and his lungs can grow so that he can be weaned off the ventilator.

I hope I explained this so it makes sense. It seems like a terrible circle to me.

Top 3 list:

  1. Lungs to grow faster than the ventilator can destroy them!!!

  2. Blood pressure to stay up.

  3. Pam to be patient. : )


Love, Pam


December 7, 2004

Good Evening, Everyone!!!

I just spoke to William Lawrence. For those of you who don’t know who this is… His wife, Melissa, was induced today at 32 weeks. Braden is 3lbs 11oz. This is their first child and they are struggling. I would be a mess if this was our first child. Fortunately Trent and I have Alexis and Zach to come home to, to keep us looking forward and to make us laugh.

Little Zane is doing OK today. I know everyone wants to know if he is growing. The doctors are not too concerned with his weight right now. PLUS it is very hard for them to get an accurate weight since he is attached to so many wires and the ventilator. The last weight that they said to me was 1lb 8oz and he has grown from 10inches to 12inches.

The current plan is to make sure his blood pressure is stable enough to start feedings again. Hopefully it will be tomorrow morning.

Thank you for all your encouraging emails!!
Pam

Colossians 3:15 - Let the peace of Christ rule in your hearts…


December 6, 2004

Little Zane has improved since yesterday. He is back to being active and giving the nurses fits. He is trying to get off the blood pressure medicine so that he can eat again. The doctors say that between 4 and 6 weeks is a very critical point for him. Today is his 4 week birthday.

Trent and I try very hard not to get too excited or too depressed with Little Zane’s constant ups and downs. It is very hard. It is also very difficult for me not to reach over to Zane and hold him and kiss him and make him feel better. I can’t wait to get my greedy hands on him.

Top three concerns:

  1. Get off the blood pressure medicine so he can eat.

  2. Lungs need to get stronger.

  3. Keep me from grabbing him up and squeezing and kissing him.


Thank you all for keeping us strong!
Pam



December 5, 2004

Two steps forward and one step back.

Zane is not doing very well today. His little lungs are continuing to deteriorate. The doctor described it to us like this: The heart and lungs are like a horse and carriage. Even though his heart is strong and healthy, it won’t last if his lungs don’t improve. AND it is very hard for the lungs to improve while on the ventilator. Catch 22

He is on very high settings of the ventilator. His blood pressure is also getting too low which means he will be put back on the medicine which means no more milk. Zane also has lost some of his spunk. He is not being his normal active self.

Several of you that have come to visit knew about the little girl next to Zane. She was less than a week older than Zane and was 1lb 2oz at birth. She had a twin that did not make it. We spoke to her parents several times and were encouraged by her progress. The doctor told us that she died yesterday.

Please pray
Pam


December 2, 2004

Hello Everyone!!!

I am so excited. Little Zane is completely off his blood pressure medicine and he got 1cc of my milk. 1cc is NOT very much but it is a good start. (it is something like 30cc = 1oz)

He does have Chronic Lung Disease but that is pretty normal for premies that are on the ventilator for an extended amount of time.

The doctors and nurses are doing their best to keep him calm and relaxed. I am afraid Zane is already too much like his brother. He is constantly moving around and giving them fits. : )

Have a great day!!!
Pam

PS – Grandpa with Dakota please call Alexis!

New Pictures of Zane