February 28, 2013

UPDATE (2/28/13)
Two months. It is hard to believe it has already been two months since we welcomed Beckett into this world. Some days it seems as though it has been longer, and some days it seems as though it was yesterday. We have experienced so much in the last two months and are constantly reminded of what a precious gift Beckett is in our lives.
Yesterday Beckett had an abdominal ultrasound because his stools have been a clay color for a little while, he has looked a little more yellow, and his direct billirubin has been up. The ultrasound showed his common bile duct is dilated and has some sludge in it, but it is not obstructed (which is a good thing). They began him on a medication last night to help clear it out, and are drawing labs again in the morning to see if it has changed. It is possible his infection is playing a part in this, but they are saying they don’t think so since the infection is localized within his wound. Speaking of his wound. It is looking so much better. It is almost completely closed and the redness has gone away and now looks like scar tissue. We keep praying once he finishes the antibiotics it is gone for good.
We have been told from the beginning Beckett will most likely need a g-tube when he goes home. Pediatric surgery came yesterday for the consult and explained the procedure. It is a surgery, so of course there are risks involved but he said complications are typically rare. They won’t do anything until he is off his antibiotics, so it won’t be until the end of next week that they would begin looking at that. It also requires an upper GI study prior to the surgery to make sure there are no surprises with anatomy. Beckett will also need a swallow study soon. This test shows whether or not the milk is going into his stomach like it is supposed to, or if he is aspirating into his lungs. He has to be able to drink a certain amount by mouth in order to do the test so we keep practicing. He is allowed to try 5 mLs twice a day. Even if he would take more that is all he gets for right now. The first try yesterday he was not interested and the second he drank maybe 1 mL. That could even be stretching it. Today the speech pathologist tried the first attempt and he drank about 4 mLs. On the second try I was able to do it with him and he drank the whole 5 mLs. He didn’t choke at all. He pulled away a few times, but as soon as you would offer it he would take it back, and he even rooted on his own. What a good job he did! The speech pathologist says he has great oral skills; it is just a matter of swallowing.
A dear friend, whom many of you know, Emily Coon, made the name sign along with bible verses for Beckett’s window. Yesterday the chaplain stopped in and said she has walked past so many times and just loves them. She said she has enjoyed them so much she just had to stop in and introduce herself. We have had so many people ask about them, and at night when the lights are out people don’t think we are in there. Jonny and I sit and watch as they stop to read and talk about them. Thank you so much Emily for giving us such a special gift!
Beckett had physical therapy yesterday but skipped OT because he had a busy morning and had just fallen asleep. Today he had both of them. When I arrived this morning there was a note from “Beckett” that told how well he had done in PT today, and all the exercises he has been working on. It was so nice of the PT to write that to us so we can keep up with how well he is doing since they normally get in before we are there.
We are getting closer each day to being able to go home which means having to begin learning how to give meds and other things. Last night I was able to give Beckett his Lovenox injection through his port. We aren’t sure if we will be using the port when we go home or if we will just give him straight injections (he has to have them twice a day), but it was fun to get to practice. Last night Beckett had lost a little weight. Tonight he had gained a lot back. That is so great, as it is very important he continue to gain weight and grow stronger. The cardiologist also came to see him this afternoon. The murmur from his shunt sounds great and they are cutting back his Lasix from three times a day to two. He also had his methadone weaned yesterday. He is getting so close to being off this completely. He only has about two or so weans left. He has been doing really well with it.
I have also started to see his demeanor return. I am so excited about this! He hasn’t been crying nearly a much, he is sleeping so much better and for longer periods of time, and he has been tolerating his feedings well. Today he also lay quietly in bed just looking around for a while and then would calmly fall asleep. He hasn’t just lain in bed without crying for a while. I am so glad to see that he is doing better, and so sad I caused him discomfort when I was just trying to help. But, things are looking better, and he is much happier than he was, so I am thrilled.
Beckett had a very special visitor today. While we were in the PICU there was one particular doctor who was there for a lot of Beckett’s “big” days. She was also there a lot while he was on ECMO because she is the director. It was evident she truly cared about Beckett, and his recovery, and we have missed her a lot since being in the NICU. But, today Dr. Kay was able to come over and visit Beckett! It was so good to see her, and for her to get to spend time with Beckett as well. He woke up right as she got there, so he was wide-awake for her visit. He was crying so she picked him up, and he of course stopped. She told him he could have whatever he wanted, and even offered him ice cream. She told him that even thought people are starting to love him in the NICU, he will always belong to the PICU. She thought he looked really good and couldn’t believe how fat his cheeks have gotten. It was such a joy to catch up with her. We have missed seeing her and having her care for our son. She was such a comfort through some very dark days. We are glad people like her are working with Beckett.
The last two days have been less eventful than the few before and for that we are truly grateful. We look forward to less intense days but continual progress towards taking Beckett home. That day is coming soon!

— with Jonathan Rupp at St. Vincent Women’s Hospital.

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