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.