Archive | March, 2010

thank you

Wow. thank you guys for your support.  Yesterday Gabi woke up with a slight fever and a cold.  I dont’ know if that is what has been bothering her few the past few nights, but even though her sats are a little lower, in the mid 70’s, I think she is doing OK.  She was still up last night at least 4 times, but I like it when there is at least an explanation…I knew she just didn’t feel good.

I reread my post yesterday and it would seem to a new reader that I am going through this myself.  I selfishly forgot to mention how absolutely wonderful my husband Ethan is!  I would not be able to get through ANY of this without him.  He is struggling too, but we deal with this in different ways (as men and women often do) and we pick each other up every day.  He is there in the middle of the night taking his turn with Gabi walking with her and consoling her.  I tell him that he needs to get up and go to work and look and act presentable and maybe put a thought together…where as I can stay in my pjs all day if I need to.  But he still gets up to relieve me when he knows I just need an hour of sleep. I couldn’t have chosen a better partner!

I am feeling better today and with this weather, who could be down?



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Holy Week

What to say what to say…

Sorry for the lack of posts.  I have been struggling. I am completely overwhelmed with the therapies, the no sleep, the puking, the gagging, the feeding regimens, the meds, the doc appts…not to mention the other 3 kids.

I didn’t want to be negative on here so I just avoided posting instead.  But the more I think about it, you all carried us through this past year so I shouldn’t shut people out.

Here is a summary:

Ear infections are gone. She is off the antibiotic but boy that messed up her digestion even more.  She was refluxing something fierce.

Therapies are going.  She is progressing very slowly.  Very slowly. And now that everyone is out in this beautiful warm weather, there are babies coming out of the woodwork and she appears to be more behind than the 3 month olds that I have seen.

As we enter into this Holy Week, I am still challenged and settling with all that has happened this past year.  As the Spring air gets warmer each day and the sun shines on a more continued basis here in crazy Chicagoland, I KNOW and believe how grateful we are that Gabi is here with us everyday…she is alive and sleeping beside me each night.  For that, I am so gratfeul.

Gabi is up crying on average 5 times a night.  She is still puking, refluxing and although she is progressing with her therapies, it is extremely slow.

We have a cardiology appt next Monday with Dr. Rao and our feeding clinic appt is on April 28th.

Have you ever seen a more serious face from a baby on a swing?!

Smile sunshine.

Seriously, spikey hair? so not funny.

An adventure to the Rainforest Cafe

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ear infection

Double ear infection!  Awesome. She is in Amoxicilin and we are hoping she still does not have a high tolerance for antibiotics since she has been on them basically the first  years of her life.  We are thankful she didn’t have to be admitted to the hospital for the cold and infection.  I have been checking her sats and they are holding steady at about 83-84 which is great for her!

Dr. Rao said it would be OK to give her another month on the clonodine patch, so her puking is somewhat under control.  We are down to about 4-5 times a day instead of every hour.  She is still up a lot at night crying but I am sure that is due to the ear infection.  The GI doc was disappointed that I didn’t stick out the 2 weeks on the special formula, but she has done MUCH better back on the Enfamil, so that she will stay on.

Other than that, happy happy baby and the therapies are in full force.  She actually holds a baby cookie and gnaws on it.  And is making good progress with her eating.  She is still not sitting up yet, but she is certainly getting stronger.

We are loving this spring weather and just loving seeing our wonderful neighborhood out and about again.  Still trying to figure out what this “normal” life is, trying not to be afraid, and just trying to enjoy Gabi and the kids because I have to remind myself everyday that we are so very blessed!

2 kiddos to keep in your prayers from the CICU.  Elizabeth and Emma.



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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!



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