22 Chambers

It has been way too long since I last updated. So sorry.

Gabi had a horrible week last week but so far these past few days she is doing better.  Last Monday, we had an appointment at CHW with our new GI doc.  They couldn’t quite grasp how bad Gabi’s feedings were and treated me like I was wasting their time.  Pretty upsetting, but I didn’t care, I pushed through and insisted they listen to me. He had a number of suggestions as to why she was so miserable. Listed are the possibilities in order from least severe to most severe.

1. An allergy to the Enfamil formula she is on.
2. Her G tube placement could be hitting a nerve in or around her stomach
3. Her stomach is not draining efficiently into her intestines (she already had 2 upper GI tests done and this proved to be normal)
4. There could be a blockage in her intestines (but because she is not throwing up bile, this is highly unlikely)
5. During her heart surgeries, a large nerve might have been damaged that is connected to both the heart and stomach (this would be the worst of all the possibilities)

So- we started with #1 and he switched the formula to nutramigen. It is made by Enfamil and is pre-digested where the proteins are broken down. I had high hopes.  After about 10 hours on the new formula (which by the way is $30 for a small can!!), the diarrhea set in.  She was pooping every hour with a runny snotty poop. And we all know what happens with diarrhea, sore butt and dehydration.  And the gagging and puking had not slowed, if anything it was worse. I called Dr. GI the next day to let him know what was going on.  Gabi had been literally crying for 24 hours straight.  He seemed to be surprised by this reaction. Apparently, he has never heard of diarrhea as an outcome from this kind of formula. He thought maybe she coincidentally had a virus at the same time.  He wanted to stick to this new food for 2 weeks and then make another move.  I gave it till Friday, 5 days.

The diarrhea lasted all week and signs of dehydration and extreme fatigue (both Gabi and me) set in. I called again on Friday and they insisted that this formula cannot cause diarrhea.  Well, motherly instincts told me otherwise and I switched her back to Enfamil. Wouldn’t you know it?  After about 12 hours, the diarrhea stopped and her butt is now finally healing  up.

I don’t know if you remember the trials of trying to wean down the clonodine patch also.  Well, she was down to a half a patch and i wondered if that had anything to do with all these feeding issues.  We had the auction dinner this past Saturday and I was exhausted and so was Gabi. I made the decision ( I’ll admit  it was a lot selfish on my part) to put the full transdermal patch back on.  We both just needed a nights sleep.

Shazam!  (who says that??) she slept that night from 8 pm to 5 am!!  She has NEVER done that.  Never. It has been 3 days now back on the full patch and back to Enfamil and she is the happiest baby!  She hadn’t smiled in over 3 weeks, now she is laughing and talking again.

Unfortuantely, now back to the work week and I am dealing with the docs upset with me for making those decisions.  The nurses both told me that they would get back to me with a new plan.  I did ask a while back if keeping the clonodine patch on would harm her and the cardiologists said no, it is just a dependency thing at this point.  Let me tell you, if that is what she needs right now, then I am going to insist to please let her get what she needs.  It’s a quality of life issue at this point, in my opinion. I don’t think anything is anatomically wrong with her and I don’t think her G tube is misplaced either.  I think she just needs this patch until she can get moving more and eating some food.

Therapies are going really well and really helping to get Gabi moving. She is still not sitting up but she is getting close. She still has torticollis ( tightening in her neck muscles) on her right side.  Our PT is working on tummy time, turning her head to her right, and getting her hip muscles extended in a superman position, all of which she cries and cries and complains complains.  I can see the tip of her nose turn blue when she gets upset and to someone that doesn’t know her, you would think she wasn’t that upset, but she doesn’t have the stamina to cry any harder.  And PT said that on her tummy, it is really hard for her to breathe because she is fighting her weight on top of her lungs, so it is probably really scary for her. Kind of was sad for me to hear. Sometimes, I think she is on her way to being a normal baby, but hearing this was a reminder that she will always be sick.

OT is going well. She is using her hands more for a purpose and finding her feet.  She still will not put any pressure on her feet when you hold her in a standing position. But we’ll get there.

Speech is hilarious. We are working on getting her tastes of rice cereal, applesause and bananas.  I bought her one of those Nuby sippy cups with the soft spout and she loves to chew on that getting literally half a drop of formula in the mouth and then promptly gagging.  She enjoys the tastes of things but just isn’t getting the hang of that swallowing concept.  We’ll get there.

The Wings of Angels dinner auction was a HUGE success. It was an incredible honor for Carsyn and I am so proud of my dear friends Chris and Michelle for organizing the event.  They raised $32,000 for the the hospital!  Unbelievable. Not to mention, it was a blast to see our heart families that have instantly become dear friends. To see the docs and nurses outside of the hospital was something really special.  When I met Dr. Hagen’s wife, I got really emotional.  Because I know to the doctor’s family, they sacrifice a lot of time without their spouse at home, but that time spent away from home saved my daughter’s life. They are amazing people and to see them “as normal people” was an honor.  And to meet their supportive families means so much.

And of course, the nurses and Jenni and Jackie all know how much we love them. Here’s a few pictures.

We are having much better days this week and the sun is actually shining at the moment and spring is almost here!!  To quote Marissa, Wahoo!

Love,

Teri

Gabi is doing great.  Her feeds are the biggest challenge for us now.   We have an appt at CHW with the feeding specialists in March, but Dr. Rao’s nurse is trying to pull some strings and get her in sooner. She turns a dark purple when she is gagging and choking on her spit up and then coughs and sputters out the throw up. Sometimes it is just a small spit up that eventually makes its way out, but other times it is projectile and shoots out of her mouth so far that it if baby puking was an olympic sport, Gabi would cerainlty get the gold medal!  The kids cheered her on this morning and gave her a quick gold medal ceremony. We found it hilarious or maybe we were just delirious. A little of both.

I was trying to get clearance over the phone to try adding rice cereal to the formula to thicken it up a little so it wouldn’t come back up as easily.  Never got the clearance because they want her to see the GI doc and feeding clinic first, but guess what?  Yes, I tried it.  I knew it wouldn’t hurt her so I went with my motherly instincts and went for it.  Well, it didn’t help anyway.  The spit up and vomit was just thicker too.  Oh well. A for effort, right?

She is getting big and a lot stronger.  Therapies have started and are helping her a great deal.  I check her sats often and they are hanging in the mid- 80’s which is excellent for Gabi!  She is doing well… we are quite blessed.

Love,
Teri

Gabi is doing great.  We had a cardiology appt up in Milwaukee on Monday and everything went well. Dr. Rao was there and said she was looking good.  He did tell me that at one point in early Fall, a lot of the docs were worried about her.  But now he is so happy with how she is doing!  And I am SO happy he is back from his trip.  He is from India and he visits his family there every January for a month. It was fun to hear all about his journey.

Gabi had labs drawn and a chest x-ray and everything looks good.  Now, the plan is to try and wean her off some of her meds.  He had taken her off her lasix but with her recent hospitalization for the virus, she was put back on.  In a week, we will take that dose down to once a day instead of 2.  He also wanted to wean down her clonodine patch ( a transdermal therapy) for anxiety and blood pressure.  On Monday evening, I followed his instructions to cut the patch in half and see how she does.  He explained that some babies don’t have any reaction to a lower dose, others get more pukey and irritable. Guess which category Gabi fell in?  yes, the extra pukey and irritable.  She was up for 2 nights in a row throwing up.  We decided to put back on a full patch and try going down to 3/4 of a patch this Monday.

That BNP number that is used to measure heart failure was at 265, down from above 600 a few months ago.  He said her heart is still working hard, but def. healing from the surgery. We don’t have another card appt for another 2 months!

Here is a picture of how they do the chest x-ray.  It looks like a medieval torture device…she loves it, as you can see.

This morning, we had an 8 month check up at the pediatrician.  She has now gotten the clearance to catch up on her vaccinations.  She got 5 shots today, which 2 included the synergist, for RSV.  This is only given to high risk babies and toddlers and costs $1200 per shot!!  Thank goodness for insurance.

We have PT, OT and speech starting to come to the house on a regular basis now.  They are starting at once a week and will ramp it up to twice a week each soon. Gabi is going to be working hard.  I am also waiting for a call to schedule an appt with the feeding team at CHW in Milwaukee.  This will include a GI study, feeding specialists to conduct a swallow study and a nutritionist to make sure she is getting the correct amount of calories. Right now, she is just getting formula, but at 8 months, she needs to start getting baby foods, but they have to make sure she will not aspirate if and when she is fed by mouth. I have been told that starting baby foods will help with the puking and gagging.  It is too easy for liquids to come back up and her stomach is not stretched enough to hold all the amount of liquid she is getting. C’mon smashed peas and bananas!

That’s about it for miss Gabrielle.  Doing well.   Don’t forget to ask me about the auction on March 6th, if you are interested in attending or donating an item.

My happy girl

Love to all-

Teri

Gabrielle is home once again and doing great! Her respiratory rate has slowed tremendously thanks to the lasix and the breathing treatments.  The docs all concluded that she had a virus of some kind and is definitely recovering. We have a follow up appt with Dr. Rao in Milwaukke next week and our pediatrician tomorrow.  We also had the home nurse over yesterday afternoon and she said that Gabi sounded good and looked nice and pink.  She unfortunately came home on O2 but it should be only for a week or so.  She hates that nasal cannula and continues to pull it off her face.  The docs said when she is sleeping is the most important time to have the O2 on.

She is once again smiling and trying her hardest to babble.  Ethan took this video of her when she got home.

We had our friends, the Buchmann’s (Carsyn’s parents) over yesterday and it was great to visit with them.  They are continuing to plan for the auction on March 6th. If anyone has anything to donate for the benefit, let me know.  All proceeds go to the cardiac floor at CHW.  The plans for the funds include: a Wii for the older cardiac kids in the playroom for theraputic use, additional bouncy seats and swings that were made in this decade, lots of toys that PT and OT need, and the majority of the funds will go towards building the garden outside the cafe at CHW.  I am so excited for this event.  If you want to attend, please let me know, there are plenty of seats available. Thanks to Anne R and Rachel for their donations!

Thanks for checking in.  Love to you all.

Teri

The nasal swab tests came back…all negative.  RSV, Influenza A and B, paraInfluenza, blah blah blah.  Not that being positive would have changed her course of treatment but now she can come out of isolation. She continues to get pep treatments (breathing treatments, like a nebulizer but much more intense). They are slowly weaning her off the O2.  Hopefully today she will get to room air. She is so bored but at least she has her Spongebob to watch.  She loves Spongebob!

They do chest x-rays in the early morning so we’ll see what the docs say about that.  I didnt’ get to see it today.  I have learned to read those pretty darn well. They are looking for the fluid that is around her heart and in her right lung.  Hopefully the lasix has helped her get rid of some of that.

Overall, she is doing well. There is hope that she may be able to come home today. Yeah!

Thanks for all the support!

Love,

Teri

Gabi’s blood tests all came back normal, so we are waiting for the nasal swab test results which will show if she has a virus.  They are thinking RSV.  SHe is doing really really well though.  She is talking to the nurses and giving plenty of dirty looks to everyone.  That’s my girl. 

The fluid around her heart has been labeled “no big deal”  I don’t know how that is no big deal, but it is.  They put her on extra lasix to pee off some of the fluid.  She is still breathing fast which is the biggest symptom she has .  She is a little congested but not bad.  She is coughing but not hacking up yucky stuff.  I am eager to find out about the virus tests.  Stinks that we are back here for a few days, but not to worry too much, she is doing OK.

Love,

Teri

Teri called me today on the way up to Milwaukee. Gabi’s breathing hasn’t normalized and when Teri took her into the Pediatrician her 02 levels were low (mid 70’s). Rather than go back and forth with the local hospital and go up to Mil. late tonight, she just grabbed some clothes and took Gabi up there this afternoon. So far they can’t quite figure out what the issue is. They did an X-Ray and things look alright, and she isn’t really showing any infection symptoms. It might be some sort of respiratory virus, but the swab on that won’t be back until tomorrow. They didn’t see anything right away on the echo either. When we get some more info I will update things. So far this looks like more of a hassle than a huge worry, and I hope it stays that way.

LATE ADDITION: Text from Teri: “Found some fluid in her heart, not a terrible worry but a concern”

Gabi is certainly keeping me on my toes.  She is so pukey and so gaggy and I was told that was going to get better after the Glenn, and so far she is still suffering from throwing up and choking on the spit up/vomit.  I called her doctors and they all said things will get better with time.

One of her home nurses was over a few nights ago and agreed with me that her G tube area was bothering her. The G tube heals up to be similar to an earing hole.  Usually when i do my daily cleansing, she isn’t affected by it at all, but all of the sudden she was in pain from tenderness.  Called surgery and answered their list of questions and she determined that Gabi probably just yanked on it too hard (which is really hard to avoid because she is so grabby now). She is grabby, gaggy Gabi. Ha! After a few days, it is feeling better.

Starting on Sat evening, she looked really terrible, was breathing fast and very pukey. I checked all my bases, sats, temp, felt her tummy, even listened to her with our stethoscope and everything seemed fine.  Today, she is still breathing fast and her night sleeps are miserable, so after smiling a bunch this morning, she is taking a long nap.  It is so difficult to decipher whether she is tired, has a cold, even gas, or is her heart failing…

2 side notes:

1. A baby girl named Ellie Potter was born a month after Gabi at CHW with the same diagnosis, HLHS.  She is awaiting a heart transplant and she is so very sick.  I know her parents well and I pray for strength for them and for courage to hold their little Ellie tight as long as she is with them here.  Their website is elizbethbrianne.com.

2. THE COLTS WON!!  We are beyond the Colts’ biggest fans as they are family.  Literally family.  I am so thrilled for the entire Colts crew as they head to another Superbowl victory!!  Although Ethan and I are SO SAD that we weren’t able to attend the playoff games in Indy because of Gabi, we were just as excited at our own party feeling blessed that she was sitting on my lap and Ethan was teaching our 2 boys about football in our living room.  GO COLTS!!

have a wonderful week!
Love,
Teri

This morning, we had 6 visitors come to the house to do their evaluation of Gabrielle:  PT/OT/Speech/Develpmental/a nurse consultant and the service coordinator.  They all assessed her on their goal score sheet.  All of them agreed, she is at a 3-4 month old level.  She is 7 months, so she is quite behind, but not so severe that she can’t catch up. Things def. could be worse!! She has qualified for PT and OT both twice a week and speech starting at once a week but moving towards twice a week soon.  She tolerated all the handling and movements well but certainly voiced her opinion when she was unhappy or working too hard. I am so excited to get this started.  Now that we are home, I don’t know quite what the next step is.

I am also quite overwhelmed with emotions lately.  An 18 month old HLHS boy just died for no real reason, and came so unexpectedly.  Another little friend that I have known since Gabi was born died right after Christmas.  His parents are absolutely devasted.  Another little heart friend is waiting for a new heart and is not doing well as she waits at CHW.  Another friend just had her Norwood and had a tough few days, but is now pulling through.  I know that every day with our children, not just heart children ,but healthy ones as well is a gift because you never know what might happen.  I was trying to get involved in different heart groups with families of heart kids to get support but I just don’t want to think about it everyday.  Is that weird?  I don’t want our lives based on her heart condition and how fragile she still is.  My perspective has changed so much.I feel very disconnected from everyday things…maybe it’s just the winter blues…

Enough of my craziness, gabi is doing great.  Everything is really good, except for the feedings. That is still horrid.  She is still pukey and very gaggy but I have been told that it will get better over time.  I just realized it has been more than a month since her most recent surgery. wow. Even these dreary winter days go by pretty quickly.

Hope everyone is hanging in there during these brutal winter days.  Can you tell I don’t like winter??? Every january/february, I try so hard to come up with a scheme to move somewhere warm and then when May FINALLY rolls around, and I forget about it!

Love to you all-

Teri