Monthly Archives: March 2016

14 Nights

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Tonight is the 14th night. I have mixed emotions and I am also emotionally drained. I am not sure how that works, but there it is.

So, how is Lyra doing? She is doing okay. We have gotten her to a point where she can tolerate enough formula to stay hydrated (yay!). However, the calorie count remains elusive. We are making progress though. She is now on a formula mix that gives her 23 calories/oz. We need to get her up to 24 calories/oz. That little tiny change may not seem like much, but for Lyra it seems like the difference between drinking skim milk or heavy cream. The process of building her up is agonizingly slow. In the past they have let us go home to build things up on our own, but they don’t want to do that this time. This time they feel like she needs to prove herself. To be honest, we don’t want to take her home unless she really can tolerate things.

I am hopeful we will be home by Wednesday, but there are no guarantees.

There are many things I miss being in the hospital. Tonight I missed celebrating my niece’s birthday. I miss sleeping in a bed that I don’t have to refill every few hours. I miss sharing a bed with my husband. I miss my dog. I miss playing on the floor with Lyra. I miss cooking dinner. I MISS BATHS!!! I miss going to walks and just doing normal daily stuff.

But I have found joy in some things that have happened while we have been here.

Lyra has started to babble. This is a major milestone for her and yesterday she said MAMA. Well, it was more like, “mamamamamamamama,” and she kind of sounded like a robotic frog when I recorded it… but she said it! The babbling is really fun and cute. I get that she is late doing it, but I don’t care. Also, Lyra celebrated her first Easter. While some might think it is sad that she celebrated it in the hospital, it was really a super nice day. My family came out to the hospital and brought a great dinner. We got to celebrate it together and Lyra got to wear a cute dress. She didn’t even puke on it!

It was a very special and happy holiday, and I am grateful to have such a wonderful family.

So, things aren’t perfect. We may, or may not, go home on Wednesday. But right now Lyra is sleeping, and I should follow suit. Tomorrow will be another day of emotional ups and downs and need all of the rest I can get.

aaaaaa

Easter Dinner wore her out

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Night 11 and counting

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Tonight is night #11 in the hospital. I left for about 30 minutes today to pick up lunch. It’s the only time I have left. We are finally making some progress, but it doesn’t make any sense and it is a little frustrating. Feeding Lyra through her J-tube was a giant disaster, to say the least.  She just couldn’t tolerate it, and actually did worse than she did being fed into her stomach. It’s not logical, but it is what happened. So, now she is back to being fed via a G tube.  She is making very slow progress, but it is progress.  At this rate we will be out of here in 3 days. The problem is, we are back where we were a month ago. She is still fed via a G-tube, and we feel like it is a matter a time before we end up in another cycle where she stops tolerating her feeds. The doctors here are amazing and have tried everything they can think of. We even did a brain MRI to make sure she did have pressure causing nausea (a realistic risk with her). So far, we have no answers. The best we can do is hope that this lasts long enough for her to grow. As soon as she turns one I am hoping to move her to a blended diet. Some parents, with kids like Lyra, have said that their children do much better on a blended diet. Luckily it sounds like the people at this hospital are big fans of it. So, here’s to hoping.

The Limits of Medicine

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One of the most common complaints I hear is, “it’s seems like the doctors aren’t even trying to find out __________”.  Believe me, I understand where they are coming from. However, I also recognize that there are limits to medicine and sometimes it is more art than science. Maybe I have a different perspective because I grew up around medical professionals. I have also grown up around teachers, and they will always tell you that works for one child does not always work for another. Sometimes doctors don’t know and there is no test that can find the answer.

Now, I also understand how frustrating it is. Even knowing that doctors do not always have the answer, sometimes it really gets to me as well. This is how appointments go with Lyra:

  • Genetics: “We have no idea what the future will hold for her. She is an interesting case. She will have disabilities, but we have no idea what those will look like.”
  • Cardiology: “Well, her heart isn’t normal, but it seems to be functioning okay. We are just going to watch it and see.”  Me: “What does that mean in the long term/ bigger picture?” Cardiology: “We have no idea.”
  • Urology: “Her urethra is dilated, but she isn’t refluxing into the kidneys.” Me: “So what does that mean?” Urology: “We don’t know, but we will just have to monitor it.”
  • Ophthalmology: “Her optic nerves are enlarged.” Me: “What does that indicate/mean?” Ophthalmology: “We have no idea.”
  • GI: “We have no idea why she doesn’t tolerate her feeds. It makes no logical sense.” (BTW, I actually really like her GI doctor because he is bound and determined to find a solution, even if it isn’t logical.)
  • Neurology: “Well her brain isn’t normal and we don’t know why.”
  • ENT: “I feel like we must all be stupid. Like we are missing something. It just doesn’t make sense.” (These were his actual words)

There are a few more, but you get the idea. To be honest, sometimes I leave these appointments and cry. I try not to do it in front of Lyra. Even though she is a baby, she doesn’t need to see how sad this makes me. I want to be able to fix SOMETHING, but I can’t. I want to know what to prepare myself for, but there are no answers. I want to know why one day she eats a few oz by mouth, and the next day she pukes if I have spoon in my hand.

Trust me, the doctors aren’t being lazy. They talk to each other and to other members of their departments. I think almost everyone in GI at the hospital knows Lyra’s case at this point. I see the look on their faces that says, “how can I tell this parent that I have no answers for her?” I always tell them it’s okay that they don’t have answers. No one does. But it still breaks my heart a little bit.

Right now we are back in the hospital, and we have been for a few days. Once again, Lyra isn’t tolerating her feeds. We even put in a new tube called a GJ (a link with an explanation is below). We feed directly into her intestines, and yet she still throws up. She throws up enough stomach bile that she actually manages to become dehydrated. She is doing okay, but we can’t quite get her feeds up to the point where she is fully hydrated or getting enough calories. We have no idea how long we will be here. No one has answers, but everyone is trying. The GI nurses who see her outpatient even came by to say hi and check on her.

I guess my point is, it’s not easy, and people need to remember that medicine doesn’t have an answer for everything. Sometimes we just have to keep trying and hope that eventually something works. Or, keep watching and hope that everything works itself out.

CHOP – Low Profile GJ Tube

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Wagon ride down to the cafeteria for lunch with Mommy and Daddy

Getting Lyra to Grow

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Getting Lyra to grow has been a tough process. The problem has always been being able to feed her enough calories, and getting her to keep them down. I like to think of her daily feeding like baking a complex dessert. It takes timing, attention to details, and a bit of luck. Some days things go really way and you end up with a beautiful souffle at the end of the day. Some days you burn the milk, kill the yeast, and forget the vanilla.  Other days you think you did everything right and you end up with bubbling yuck on the bottom of your oven.

Lyra is fed 21 hours a day. She likes eating solids, but only at certain times, and she will only take 3-4 bits. She has been into her bottle recently as well, but we really have to limit how much she will take at a time. Her stomach does not empty at a normal rate, hence why she gets a slow drip throughout the whole day. Even with that slow drip, her stomach becomes overwhelmed and she starts to throw everything up, quickly landing us back in the hospital.

Recently Lyra has not been growing. She has totally fallen off the charts for her height and we have not been able to increase her formula intake enough. She just can’t tolerate more in her stomach. This means we are heading back into the hospital for a new type of tube. This one is called a GJ tube. It has two ports: the G port feeds right into her stomach (like her current tube), the J port bipasses the stomach and goes into her small intestine. The hope is that we will be able to alternate using the G and J ports so her stomach will get a sufficient amount of rest. This may mean that she is able to tolerate more by mouth!

She basically has not grown in 4 months and this is our best bet. I am trying not to be too discouraged about having to put her back under. I know this is what is best for her, but it is never easy to put my infant under anesthesia. Hopefully after all of this she will finally fully outgrow her 3-6 month clothes!