The NICU Roller Coaster

Since Dylan was born, I've been reading everything I can find about premature babies, NICUs and other related topics. One thing I keep seeing is mention of "The NICU roller coaster". The phrase refers to how your emotions can have you feeling up, down, twisted around and upside down and then up and down some more over the course of a baby's stay in the NICU. I believe I am finally beginning to get an idea of what that is all about...

Friday afternoon, the nurse practitioner in charge of Dylan's care called to give me an update before going off for the weekend. The basics of the update were that he has been doing very well, especially for a 30-weeker. His feedings were going great and he continues to put on weight. She did notice one abnormal thing which shouldn't be great cause for concern, but she wanted to let me know, just to be thorough. While doing his exam, she thought his fontanels felt puffy or swollen. She told me that they would be performing an ultrasound to check things out. She said it could be from any number of reasons, including that he was just fussy at the time of the exam.

Barb and I worried a bit about it, but when we went to see him Friday night, everything was fine. The nurse did mention that he had a few apneas, but only one or two- nothing to worry about. The results of the ultrasound would likely not be available until Saturday, they said.

Saturday afternoon, I got a phone call from the covering nurse practitioner. It turns out that the ultrasound revealed that Dylan's ventricles were enlarged. She could only say that it was not cause by a brain bleed, which is good news, but couldn't say much more until they got an MRI and could get a closer look at it. Now we were starting to really worry.

When we got to the hospital Saturday afternoon, we asked to speak to the physician on call to get an explanation of everything that was happening with Dylan. Dr Wynne was very detailed in his explanation, showing us pictures of normal ventricle size and then comparing them to images of Dylan's. He showed us the results of the MRI and explained exactly what we were looking at. Through it all, one thing really stuck in my head- "These are really enlarged ventricles", he said.

The proper course of action at the time though, is to keep a close eye on things and wait to see what, if anything develops. Dylan is exhibiting no symptoms that would be problematic or cause for further concern as of yet. Dr Wynne wants to watch him over the weekend and have a specialist look at the MRI on Monday to determine if anything needs to be done. If things were to change dramatically, such as rapid enlargement of his head from inter cranial pressure, severe drops in heart rate or episodes of apnea that require stimulation to recover from, then they could treat him emergently and either tap the fluid to allow it to drain or do the same with a shunt. But at the moment, it's just wait and see.

After hearing all of this, Barbara really needed to hold her baby, so she began to kangaroo with him. Dylan was his normal self at first, but after about 1/2 an hour, he became restless and fussy. His oxygen saturation levels began to drop intermittently from the 95-100 range where he would normally measure down into the low 80's with some dips into the 70's and 60's. The nurse suspected that this was due mostly to his stressful day. To perform the MRI, Dylan had to be bundled up and transported to a different building of the hospital where the MRIs are performed. For you and I this wouldn't be a big deal at all, but for an infant, especially a preemie, this can be quite taxing. So, assuming he was worn out, we put him back in his isolette to let him relax in as much comfort as possible. His sats levelled out a bit, and we felt comfortable enough to head downstairs to get something to eat.

When we returned from eating, Dylan was resting quite comfortably, having just been fed. His oxygen saturation (sats) was at 99-100% and he was sleeping peacefully. The big problem though, was that we couldn't hold him, touch him or do anything that might disturb him. After what was a very stressful day for him, he needed no additional stress from his parents. Not being able to hold and comfort our baby was tough. Just sitting there, knowing that there was something going on in his head that could cause problems, without being able to do anything for him... it's not something I want to go through again.

Hopefully, the rest did him some good. Today, it's back to watching and waiting, hopefully for nothing.

And by the way, Dylan's weight is up to 1705 grams, or 3lbs 12 oz.

Progress Report

Back from the NICU yet agin, with all of the latest news about the world's cutest baby...

Vitals:

Weight: 1575 grams or 3 lbs, 8 oz
Feedings: 30 cc breastmilk

Changes: PICC line removed
All IVs discontinued
Began receiving supplemental vitamins mixed with breastmilk, 1/2 cc 2 x daily

So there you have "Dylan by Numbers".

He's really doing well, as I guess you can tell from the large increase in his feedings and the fact that he is completely off of any IVs. He doesn't have any holes in him now that he didn't come with from the factory.

This is actually great news for Barb and I, as now that he no loner has the PICC line, we can pick him up at any time, without needing a nurses supervision. Previously, because the PICC line does run fairly close to his heart, he could only be picked up with supervision, to make sure the line didn't move, causing a potentially dangerous situation. Now, we can take a look at his situation, and pick him up if we see fit.

Now, this doesn't mean that we're going to pick him up every 5 minutes, though. For instance, this evening when we arrived, he had just been fed, changed and tucked back into bed. Shift change was coming in 45 minutes. We weren't going to rouse him from sleep just to have to put him back down again in such a short period of time. Instead, we waited until after shift change, when Barbara was able to kangaroo for over an hour, and then she handed him off to me for some more kangaroo time. I don't know... with all of this kangaroo care, he may wind up with an Australian accent.

Sorry this is so short, but it's the late end of a long day. If you have any questions, feel free to click the link directly below the post marked "comments".

Until next time...

Lots to Update

Back to Work...

Sorry that it's been a few days since my last update. I went back to work for the first time in a few weeks on Monday, and it's a bit of an adjustment for me. Let's just say that it's tough to focus on the job at hand when you know you have a little one waiting for you 45 miles away. Needlesss to say, we've been straight up to the NICU after work each night, and not getting back until rather late. I should be updating a bit more regularly now- maybe every 2 days or so.

What's New?

Well... let's see- Dylan is now receiving 23cc of breastmilk with each feeding. His IV nutrients have been discontinued, and mom's milk is all he's getting now (score one for Mom!). His weight is up to 1575g or about 3 lbs, 7 1/2 oz. Also, he has grown 1/2 of an inch since birth, to 17 inches long. Today, he also passed his first hearing test. We weren't there at the time, but there was a note attached to his isolette which explained that the test was performed and that he passed and also that they would be back to do a folllow up test in the future. Otherwise, there hasn't been much change to things. There is some small concern about his red blood cell counts, and that is something that they are monitoring closely. If they feel that he is not producing enough on his own, they can give him a shot of something called Epogen to help him do so.

He's gotten very comfortable with all of the handling from the nurses, and typically doesn't get very upset about anything that they need to do with him. He has earned himself a bit of a reputation though. Nurses warn each other as they change shifts, that he may try to pee on them or poop on them. Apparently, he has gotten a few of them. Dylan especially likes to wait until you are changing a dirty diaper to poop some more- into the clean diaper, of course.

Even better though, is what he did to me tonight. The way the nurses weigh him is a bit of a process. First, they pick him up off of his bed totally naked and weigh it with his bedding. Then they place him back on the bed and weigh everything again, this time including Dylan. The difference, of course, is what Dylan's weight is. Tonight, I offered to help by holding Dylan while the nurse noted the weights. So, while I was holding him suspended over his bed, he decided to poop right into my hand. There was no warning at all- just a handful of baby poop.

I'm so proud of him :)

Graduation

I would be remiss if I didn't mention that Dylan has officially graduated to NICU2, where as one nurse puts it, they focus on getting them home, not just getting them better. Basically, it's the same setup as NICU3, but the nurses each handle 4 babies in NICU2 where they handle only 2 in NICU3. The nurses even rotate between both NICUs, so we can request, as we did, nurses that we have already grown comfortable with.

Speaking of Nurses...

I think it's important that I give mention to the great nurses that have been taking such good care of Dylan these first 11 days. Shands must really have the cream of the crop. It seems that the vast majority of the nurses there truly care about the babies almost as they would if they were there own children. Simple things like using pressure to clot blood after a pin prick to check the blood sugar rather than using a band-aid, because the band-aid hurts the baby when they are removed, or taking the time to slow down when taking vitals if the baby seems restless or agitated- these are things that they don't have to do, but the good nurses do because they care. It's really heart-warming to know that he is being taken such good care of when we can not be there.

Looking Ahead...

So what's in store for Dylan over the next few days?

By the time I am posting this, he should be completely off of any IVs. When we left, his lipids were on their last dose, and when that ran out, it was to be turned off for good. This also means that his PICC line, or central IV, will be coming out entirely. The only things he will be hooked up to now will be the monitors that watch his heart, respirations and temperature, and his feeding tube.

Also, a Nurse Practicioner called today to talk to Barbara about the possibility of moving Dylan to another hospital. Apparently they feel that he is doing well enough that he doesn't need the level of care that Shands provides. My personal opinion is that they are crowded and could use his spot for another baby. The problem is this- there are two hospitals in the area that they are affiliated with. There is one in Gainesville, which is a bit further up the road from where he is now, and one in Ocala which is currently full. Simply put- they want us to OK moving him even further away. FAT CHANCE. Regardless of the reasons, there's just no way he's getting any further away, even if it's only an additional 15 minutes.

Otherwise, it's just more of the same for little Dylan- steadily increasing feedings, watching closely to make sure things are progressing normally, lots of rest, and quite a bit of worry from his parents.