Thursday, April 15, 2010

Life is a Rollercoaster

The life of a heart mom is such a roller coaster. I was warned of this but did not realize how true it is. So much has happened in the past two days so be warned this is LONG!

Let's start with the good!

Yesterday was amazing! Jacob was moved to the step down unit at 7a.m. The Cardiac Care Unit (CCU) is one step closer to home. The day was full of doctors and specialists coming in and out so it went by fast but it was very exciting. Let me break down the day.

Jacob ripped off his oxygen in the morning and has been fine without it. My boy knew it was time for that to go.

Jacob loved the bottle. He sucked and swallowed like a champ. Unfortunately they made him stop after 15cc's because he was working to hard. Jake is a heavy breather, unfortunatly when he is feeding he has to work harder because of the breathing. It is like trying to climb a mountain while drinking out of a cup.

What this means for Jake: If he is working to hard to eat then he is burning calories and wearing himself out. This is dangerous because he won't gain weight, he is burning it all off.

The next step: They are going to do a swallow study to make sure he is not asperating. Asperating means the milk is going into his lungs. This is dangerous so the first step is to make sure that is not happening. If it is then we can try thickening his food. If that doesn't work then he may have to come home on the ng tube or have a g-tube. The g-tube has to be put in surgically so I really don't want him to have that unless absolutely necessary. It is basically a little button in his belly that we would feed him through. He loves the bottle so I really hope he can learn to feed without working to hard so he won't need an additonal surgery.

Vocal Cords:
ENT came to see Jacob yesterday and we had great news! His vocal cords are not paralyzed!!!!! This is great because that was the main risk factor for apsirating. Plus it means there is no permenant damage and his voice will come back. He is just hoarse from the vent.

The best part of yesterday was when the doctor said he thought we should be able to go home by early next week! My mom and I also went through Infant CPR training. I hope to never have to use it but its good to know.

Now for today...

Jacob is still doing well however today was very frustrating and overwhelming.

Jacob took the bottle like a champ today. I was so proud at how he loved it. But again he was breathing too fast so there is still a concern of safety. His swallow study is scheduled for 11am tomorrow morning.

They will also do an xray of Jake's diaphram tomorrow to make sure that it was not damaged in the surgery. If it was then during his second heart operation they would also repair that. This is frustrating because every doctor/nurse that comes in talks about how he breathes to fast and wants to find out why. Every cardiologist that comes in says oh that is because he had a restricted atrial septum and although not great, is normal and will eventually get better. So they are doing the test but most likely it will come back normal and they will say "It is just how he breathes". Again, can we say rollercoaster... getting dizzy yet?

Genetics came and they are going to run more tests to make sure there are no other chromosomal issues. They don't think there are but since he has an ear tag (small piece of skin on his ear that they will remove during next surgery) and the heart condition, they want to make sure. We had an amnio and it was ok so I am not as concerned. They are very thourough here and I pray that everything turns out fine. The doctor said not to worry but of course its me we are talking about. I will worry until I know for sure. Please Pray.

The Big Worry of the Day:
Jake's cardiologist came to see me today and said that they saw some scar tissue build up in his aorta. This is a risk of the surgery since they construct this new aorta. Anyway the scar tissue causes narrowing of the aorta and this can be extremely dangerous. Jacob is showing signs that this may be happenig. The problem is that they can't go in to fix it until 6 weeks after surgery. Basically they would go in by cath and use a balloon to dialate and open it back up.

What this means:
She said we could still go home next week but she wants to make sure the cardiologist monitors this very closely because it is easily missed. If they don't catch it, Jake could get very sick very fast and it could be a life or death situation. I was nervous enough taking him home but this puts him at an even higher risk. There is nothing we can do but monitor it right now. He may have to come back in a month for the cath lab procedure. The good news is we are aware of it so they can watch it and if it gets worse we can get him help. Signs I have to look for at home are eating changes, vomiting, extra irritable. Basically anything out of the ordinary and I need to have him checked out. I hope the doc's are ready for one annoying mom who brings their baby in all of the time lol.

I am emotionally drained. It is so difficult to watch your baby go through so much and not be able to protect them from it. Excited to come home. Nervous about all of the what if's. Praying Jacob continues to do well and God continues to look out for him.

Prayer Requests:
1. Please pray Jacob's aorta does not get worse and he doesn't need yet another procedure.
2. Pray the swallow study/diaphram study goes well
3. Pray he doesn't have any other genetic issues
4. Pray he learns to take the bottle without wearing himself out

I can not thank everyone enough for all of the love and support we have recieved and for all of the prayers you have sent up. Our baby boy is so sweet and such an amazing fighter. I pray he can be home soon and live a more "Normal" life without monitors and needles. Thank you again from the bottom of our hearts.


  1. Kathy, I've been thinking about you and sweet Jacob so much lately. It is hard when your kiddo has something that makes him "different" from the typical HLHS kid - even though they say every hypoplast is different, it is unnerving when each new doctor or nurse freaks out about the thing that makes him different, right? (In Jacob's case, it's his rapid breathing - with Bodie, it's his abnormally low heart rate.) I'm praying that it's something that just makes Jacob unique, but doesn't necessarily put him at a higher risk of anything.

    I know the emotional roller coaster is so hard and you don't really get how much of a roller coaster it is until you're living it. I finally came to the conclusion that I couldn't protect myself from the lows, so I might as well enjoy the highs. Made it a little easier to get through things day by day. Still focusing on getting through things day by day.

    Stay strong mama! Jacob will be home before you know it!

    Heart hugs,
    Amy & Bodie

  2. Amy,

    Thank you so much. I think of you guys often as well. We will always have a bond because of our heart babies. Especially since our other kids are almost exactly the same age as well. We really have been walking on the same path. I too am trying to focus on the highs and trying to focus on the fact that all of this is to give him a "normal" life. he won't remember it all.

    The echo looked good today, aorta was ok. Still working on his feeding and trying to get a plan together.

    Heart Hugs