Brennan is home!  More on that later! In the meantime…

SPECIAL NOTE REGARDING VISITORS

We are happy so many people want to see/visit/hold B, and sometimes we forget Admiral Dad has a public job in a small town and knows lots of great people.  Numerous people have helped out and supported us, and we are glad they are anxious to meet the Captain!

However, the doctors strongly urged us not to have any visitors until after Brennan has passed his term date, gained a certain weight, and had his immunizations.

Now that B is home, we ask you to continue to support him from a distance. Please remember that he is still small (being born two months early) and continues to have special needs at home.  We want the best for his health, and we know you do too.

His immune system isn’t completely developed yet.  He was also born with respiratory distress syndrome, and his respiratory system is still particularly vulnerable. Babies born before 36 weeks are at highest risk for complications like bronchitis, pneumonia, respiratory syncytial virus (RSV), and other serious breathing problems that could put us back in the hospital. Sometimes the side effects are so bad that, while uncommon, they can be fatal for premature babies. So please understand why we prefer not to have visitors just yet.  It is not simply being over-protective — we have personally lived through uncommon complications that were fatal to our preemie child.

Additionally, as B is still underdeveloped, his sensory system is also learning how to cope with the new world and he gets overstimulated easily. In the hospital, he was in a warm, dark, and mostly quiet place where he could sleep a lot. He still needs all his energy to eat, grow, and thrive at home. He is still very small, and needs to keep a lot in reserve.

Please know that this note is not meant to hurt or offend anyone, it is simply meant to show that even though B is home, he still needs some extra time before he can personally greet you. Thank you for understanding and respecting our wishes to keep B happy and healthy in order to complete many missions in the future.

Mom & Dad

We are getting the sense from some (not all) of the nursing staff that it’s bothersome that the CMO or I am at the hospital 24/7.  Yesterday, his nurse said we could go home together because they could watch him, saying “it’s what we do”.  During medical rounds, the neonatal nurse practitioner seemed somewhat offended by my insistence on a particular piece of B’s care saying that the nurses know what to do and they would guide us to what’s appropriate.  They are probably annoyed that I insist on keeping track on my own of B’s vitals and progression.

The NNP then went on to discuss B, giving us some info based on his gestational age which she had completely wrong.  When corrected, she said she must have “written it down wrong”.

B’s brother would have had a significantly increased chance of survival if a different nurse had written a negative sign instead of a plus sign on her OB chart and let us come in instead of insisting everything was fine and we didn’t need to.  Through some internet searching, we discovered that nurse was later fired on the day we told the clinic what had happened.

For the rest of our lives, we will always wonder what an extra day would have meant for B’s brother if someone hadn’t “written it down wrong”.  We will wrestle with the guilt of it all our lives. Now I understand better how some people get to be “those parents”.  We are “those parents”.

This is an unofficial report, so I’ll drop the act.

C and I are somewhat frustrated by assessing B’s progress at the moment.  He has to take so many feedings without a tube within a day, then they will give him 2-3 days after that to come home.  We keep thinking we are at that point, then nurses will tell us we are pretty much there, but then a different nurse will contradict what was stated.  The problem with being in such a large institution with nursing teams is that we are having difficulty assessing B’s overall progress and when he will be coming home.  Today, we though he might be home as early as Monday (6/13), and we had been rushed to do some infant CPR, watch some educational videos, read some literature, and push to do a bottle feed or two.  Then right at shift change, our departing nurse said he would need to do a tube feeding, which would reset the 2-3 day clock.  THEN the evening nurse asked us if we wanted to breastfeed or bottle for his next feed (not tube), when the previous nurse made it sound certain we needed to tube him.

So when is B coming home?  We don’t know.  We guess next week… sometime.  In the midst of all this, I’m trying to juggle a work schedule and putting in as much time as I can, but also needing to be at the hospital as much as possible.  Since C can’t leave the hospital now at all, this makes logistics like feeding cats, etc. even more touch and go.