Sorry I have not written in awhile, but we have had a stressful few days, and today is the first day that things are looking up and I could summon the energy to write.
On Wednesday, Natalie got her EKG and everything showed that her PDA is still the same size, but it is not growing larger and not bothering her, so that is sidelined. For now.
The nurse taught me how to pick her up (while she held all her tubes/wires) and let me position her on me. Up to this point, I would always sit down and they would place her, very carefully, on me while making sure all her devices were in the clear. It was pretty crazy, that over six weeks later and it was the first time I was picking her up. I feel like we have a lot of those moments to look forward to in the future. The simple, everyday actions we all take for granted, but will feel momentous to us.
After that, I held her for a few hours and she was really fussy which is unlike her. Usually the moment she hits my skin, she curls up and passes out. She did eventually fall asleep, but she just did not seem as relaxed as usual. I put it off as one of a million little things that could be bothering her and did not worry about it. When we put her back in her isolette she was all relaxed like usual, but after a few minutes I noticed there was green, mossy looking throw up on her face and neck. I was immediately concerned because this was the same substance that was being suctioned out of her belly when she was very sick. They told us not to panic, that it could just be her body not accepting the new level of feeding and be something simple. Her numbers were still great, as was her color and her belly was soft (which is a major factor in these intestinal problems) so they were not concerned about an emergency, but were concerned about what it could be turning into.
I think we called a thousand times through the night to check on her. Once she threw up, they paused her feeds and they decided they would do blood work and an x-ray in the morning. She continued to seem fine and her numbers were good; this did not seem like a sick baby. Of course this was during another snowstorm, so we left real early the next morning to get in knowing the surgeon would be looking at the x-ray early. Natalie's room is the first room you see upon entering. Actually, it is the only room you can see through the door from the lobby. That morning we came in to hang up our jackets and wash our hands before entering and could see the head doctor and surgeon outside her room (this is never a good sign). They seemed relaxed so I knew we were not in immediate trouble, but I am really tired of finding these people outside her door!
The surgeon explained that it looked like there was a partial block or a "kink" in her intestines. This could be from scar tissue or swelling or other medical terms I have forgotten. He assured us this was purely a "mechanical" problem and if she could still pass through the partial opening then it would not make her sick. This is something that can happen and they told us that it is possible for her body to fix it itself. Otherwise, they would have to fix it surgically and it would have to be dire circumstances to get him to agree to open her up so quickly after her last surgery. He said if she does not heal herself, best case scenario is she can live with it for a few weeks and he can fix it when her does the surgery to reconnect her intestines. So far, she was still outputting into her stoma bag and her stomach was nice and soft, so they were hoping it would not make her sick and that if they let her gut rest (take her off food) that it would heal on its own.
Then he told us he was going on vacation the next day and would be skiing for a week, but one of his partners would take care of us.
I guess these people are allowed to have lives and plans and such, but obviously I would prefer they revolved their lives around not just their patients, but one particular (and very cute) patient.
So, Thursday went on with no incident. Good numbers, soft belly, out putting some in her bag, not a ton, but some. They had an Anderson tube in coming out through her mouth to keep suctioning out the green bile in her belly. She hates this tube. It is really big compared to her mouth so this is completely understandable. She seemed a little sleepy, but they had been messing with her a lot, so it was hard to tell whether this was a symptom of something or not.
We called on Friday morning, and she was still doing good and everything seemed the same so I went back to sleep and let myself go in late that day. I got in around noon and did not see her nurse, so I went to take care of a few things and when I came back she was doing her "care" (this is what they call it every 3/4 hours when they change them, take their temp and just generally check in on them). This was the same nurse as the day before which is always good because they can notice small differences in comparison. She looked up and told me she was concerned. My stomach dropped. That nothing was really coming into her bag. It dropped further. And that though her stomach was not hard, it was firmer than it had been the day before. I was crying at this point.
If you know anything about NEC (the dangerous condition that she had the surgery for) then you know that they are all symptoms for this. I know they were beyond mild in comparison and she was still seemingly healthy, but just hearing the slightest possibility was very hard. The nurse was not alarmed, but just wanted to make sure she was being watched carefully so instead of writing it in her chart, she just walked into the doctors lounge and told them directly. The doctor came right out and took a look at Natalie and decided to do another x-ray again. I basically just sat there a quietly cried until after they did her x-ray. I think it was more of me decompressing than anything and by the time the results came back I was composed. The x-rays showed no change which was good and bad. Good that it had not deteriorated into a dangerous situation, but bad in that things were not moving around as much as they should be.
We went home a little down, but hoping for the best. Every time there has been an issue, they have told us it is possible for it to resolves itself, but so far that had not happened, so I was not holding out hope. We called throughout the night (every time I woke up to pump) and got positive reports on her numbers and everything so we felt pretty good. We actually had some plans we were trying to work into our Saturday and were hoping to keep them. We woke up Saturday morning and called in to find out that she did have some output into her bag (yay!), but it was rust colored (oh no). Otherwise, she was doing good, but they were going to do another x-ray (I assume Natalie will glow in the dark sometime soon).
The last thing that happened before they decided to do surgery on Natalie a couple of weeks ago was she had rusty colored stools (which meant there was blood). They were cautiously optimistic that this was what needed to pass and it was not. We went straight to the hospital (who needs to ever run errands anyways) and got there to check with the doctor. The doctor was on rounds when they told her we were there and she said she would talk to us after. That is a good sign. If there was a major problem, she would have stopped what she was doing and come right over considering rounds takes a couple of hours.
I got to kangaroo with Natalie for a couple of hours which was great because we had not since Wednesday. She would squirm a little, but ultimately relaxed. The doctor came by and said the x-ray looked the same (again, good and bad news). That her stomach was soft, but now it was a little distended, though she was happy that she would put pressure on it and Natalie did not seem to feel in pain, so it was not tender. She told us she asked for the surgeon to come take a look at her. He gets all the x-rays as soon as the NICU doctors get them and ultimately they are deferred to when it comes to future action. She really wanted him to do a physical examination so over the days he could see the differences in her. Since these babies cannot speak up on what is bothering them visual cues are the biggest factor the doctors can use to diagnose.
We were happy to see that Natalie was passing some more liquid into her bag than the day before but it was still very low amounts. The surgeon came by and really was only there for a few minutes. He basically reiterated what our doctor said. He explained how 80% of the battle for them when it comes to a baby in Natalie's state is knowing when it was the right time to intervene. He did not seem too positive but told us, like always, we would have to wait and see.
We went home last night in pretty low spirits. We were happy that she had a little more fluid and that she seemed a little more awake, but between the doctor and the surgeon felt like we should just accept that surgery was in the immediate future and hope that we were wrong. We went out to dinner with our friends who are getting married this week with pretty heavy hearts and the moment we got home I had Jimmy call in to check on her.
She had a fever and was squirming around, but, great news, she passed a ton of gas into her bag (this is really great news). They assumed the fever and squirming were from her having to work to get it out, but they were going to wait an hour to take her temp again to know for sure. We called an hour later and sure enough her temp was normal and she had passed some more liquid into bag. It is amazing how fast our moods can change. I never thought I would be so excited to hear that my beautiful little girl was farting out her stomach.
We called throughout the night and kept getting good reports. We went in nervous to see what the next x-ray would say since we were so happy with the little progress she had made. As they day continued she kept getting more into her bag than she had for the past few days. We kangarooed for over four hours, half with me and then half with Jimmy and she seemed like she felt a lot better. She was awake more often and seemed more relaxed. You can tell when she is working on passing something because she does curl her body up tight and whine, but it was still passing. They came in to tell us that the x-ray barely looked different, just barely enough to say it is very slightly better. Between all of this they decided to take our her Anderson tube tonight and resume feedings in the morning. They would not do an x-ray in the morning and would see if she would keep progressing in this positive manner.
These days have been extremely stressful. I started getting into the "this isn't fair" mindset that while my sweet little baby has been working so hard and recovering so well from her surgery that we would hit another road block. We know we are far from in the clear from this situation (among others), but hope she will continue getting better on her own.
Sorry this was so long, but that is what we have been doing for the past few days.
Here is your dose of Natalie Rose:
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| Feeling better and hanging out with Mommy |
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| A quick look at her pretty face (though she is not happy here) |
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| Under the weather, but her eyes are open (and here is a nice {gross} look at her stoma bag) |
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