Friday, October 29, 2010

Lots to Update! (cont)

This post is a continuation of 2 previous posts regarding my labor, delivery, and Kinsley Anne's NICU stay. I would recommend reading those first to avoid confusion! :)

First of all, I think that I neglected to include her birth statistics in my previous post. So, here they are. At birth, Kinsley Anne was:
35 weeks, 4 days gestation
7lb 3oz (yes, at 4.5wks early!)

Now, onto the updates! On Monday, we went to see Kinsley Anne's pediatrician (PMD) for the first time outpatient. The PMD did come by the NICU as an introduction. However, I already knew her since she was previously a resident that came through our pediatric neurology office for a month or two. She is a part of a practice & she will most likely not be the doctor we see regularly. I had already set my mind on another female in the practice who is a little older. Anyway....we had her weight checked and she was 6#6oz. This is the same as she was at discharge 2 days prior, so we were happy to see that we had stopped losing, and started maintaining. Now we go back in another week to check her weight again. Let's hope she has gained by then!! Otherwise, her exam was great. The PMD did discuss that if we needed any help coordinating the care between pulmonologist & surgeon, to let them know and they would be happy to help in any way that they could. The PMD also noted that she could hear air flowing in her left lung. This was really reassuring to Kyle & I since we were under the impression from NICU that the majority of her left lung was cysts & not normal lung tissue.

Tuesday, Kinsley Anne and I just lounged around the house & napped off and on all day. She is really good at that & I have always loved naps, so we go well together! :) She is such a good baby and really only cries if she is hungry. Otherwise she is either sleeping or staring at the world, just taking it all in.

Wednesday we visited with the pediatric pulmonologist. This man is such a good guy (he's a daddy to 2 young kids) and I have heard great things about him as a doctor as well. His office is across the hall from my peds neuro office that I work in, too. (so of course we had to say hi to all of my coworkers!) We barely made it off of the elevator before getting swarmed. :) At the pulm visit, her O2 Sat was 97-98% (PERFECT!). Her weight was 6#9oz (YAY!). Dr. Elidemir asked if we wanted to review & look at her CT scan from the hospital and of course we said yes. Here is what we discussed:
1) Her right lung is perfectly developed. The size is good & her lung is made fully of normal lung tissue.

2) Her left lung is small. She has been diagnosed with Hypoplasia of the Left Lung. This basically means that at some point during her fetal development, the lung stopped growing or was restricted in some way. Why? We do not know & may never know. Usually there is a tumor, vasculature abnormality, airway abnormality, etc. Our sweet girl fortunately has none of these things. These are the things they looked for with the CXRs, CT scan, and Echo. I have requested that the level 2 ultrasound report that we had done at 20 wks gestation be faxed to the doctor in case they made comment of anything abnormal. However, I don't suspect that they saw anything suspicious on her lung since we were there to look at her feet and the doctor didn't say anything to us or my regular OB. Unfortunately, they did not record the ultrasound like I had hoped.

3) There are cyst-like structures lining the bottom/outside of the left lung. There are 2 possibilities for what these may be...
a) These could be cysts. This would support the diagnosis of CCAM, which essentially means that the lung forms in cysts rather than normal lung tissue during fetal development. However, Dr. E does not think that her lung looks typical of CCAM and therefore is holding off on diagnosing her with this. If they are cysts, there is a possibility that they were larger at some point and are shrinking in size, but of course, we have no way to know that at this point.
b) These could be air pockets. Dr. E said that sometimes, air gets trapped in some part of the lung during fetal lung development and create these pockets. Occasionally, as above, they are big enough that they can restrict the rest of the lung from developing. That means that the air pockets he's seeing on Kinsley's CT would have been larger at some point, which again, we can't prove at this time.

4) The majority of Kinsley's lungs are normal lung tissue. The right is completely normal and aside from this row of weird structures, her left lung is also comprised of normal lung tissue. This gives Dr. E a lot of hope that her left lung will grow over the next 6 years. It will probably always be smaller than "normal" but it could definitely grow.

So what do we do now?
1) Keep Kinsley Anne healthy! The #1 priority right now is to avoid infection. Anyone with a problem like this is more susceptible to respiratory infection/pneumonia. Kyle installed a couple of hospital-grade hand sanitizer pumps at home to help with hand hygiene in our visitors and with ourselves. Call us crazy, call us germaphobes, but we'll do what it takes. We are not going to be homebound by any means. I am going to go on errands and do things that I would do with a "normal baby" but I will always be on the lookout for ways to avoid infection. If I get in trouble for giving strangers evil glares or hand slaps for touching Kinsley in the grocery store, etc. then you'll know why! haha

2) "I would not let any surgeon touch her right now." - Dr. E Basically, until we figure out what's going on, we're not going to pursue surgery. We will follow her with CXRs and potentially another more limited CT scan (with less radiation than the 1st) monthly for a few months. The hope is that we will see reduction in size of these mysterious cyst/air pocket structures and growth of the lung. We will be seeing the pulmonologist monthly for
these tests.

3) pray, pray, pray! I believe in a God who can perform miracles and I think it would be awesome if we could just continue to puzzle the doctors when one of these CXRs or CT scans shows that she has a substantially larger left lung and substantially fewer, smaller cysts/pockets. I know that God already has a plan for this sweet girl's life & we are just here to care for her but I can't help but pray that we could avoid surgery!!

Otherwise, we will just continue living our crazy life! The puppies have really adjusted well to her coming home. They sniff her constantly & lick her feet and top of her head. They have not nipped, snapped, etc. at all. Bowen is already thinking that this is his baby & that he has to scare off all visitors. Avery just tilts her head anytime Kinsley makes a squeak.

I will continue to update as we get any other information & of course I'll put up pictures of our homecoming and just some sweet pictures of Kinsley Anne soon!!

Until Next Time...
Love, Jen
Until Next Time...
Love, Jen

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