Statement from Command

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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

Admiral’s Report (Unofficial): Stardate 0613.16

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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”.

Routine

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Since the Captain was moved to the Level II NICU, I’ve pretty much been here as much as possible. I’ve gone home a few nights. When my sister visited, the night before I went into work one last time, and the night I was diagnosed with Mastitis.

For those who don’t know what Mastitis is, it’s an infection in your breast tissue that causes sudden flu like symptoms and hard red lump in your breast from the stagnant milk. The treatment is antibiotics, heat and to drain the milk from that breast every 2 hours, which makes sleeping fun. On top of the that, as some kind of cruel joke, the antibiodics proscribed are to be taken on a empty stomach. Which is one more thing to schedule around.

But in general I am developing a routine here. I sleep in the Captain’s room which has a very uncomfortable couch that turns into an even more uncomfortable twin size bed. As a newborn he needs to eat every 2-3 hours. But if he’s doing an oral feed or a tube feed all depends on if he’s cueing or not. Preemies have such low energy that they sleep a lot, more than a typical newborn, so even though they need food they may not show it because they are conserving energy to grow. Which means being on demand when he does show interest and is cueing for oral feedings.

Now that we’ve introduced bottles of breastmilk that the Admiral can give him I am able to get a little more rest and go home a bit more. I will write more on bottles later, but for now know it’s good for the Captain to get these bottles of my breastmilk between breastfeeding sessions because we can see exactly how much he’s getting, and there is a caloric fortifier and a multivitamin being added.

The last few nights we have switched off. I stay, the Admiral goes home, I go home the Admiral stays. This seems to be working well. We each get a break, each get to sleep in our own bed, shower in our shower, feed the cats, do a little laundry, housework etc. I am still not able to sleep all way through the night even at home, because I still have to wake up to pump so we have something for those bottles. But sleeping in my own bed makes getting up so much easier.

All in all things have settled into a strange domestic routine with the NICU as our background. Sleep, breastfeed, pump, eat, bathroom, wash pump supplies, repeat. We still don’t have an exact date we will be going home, and to be honest we probably won’t until about a few hours before discharge. It’s pretty much all up to the Captain. Does he continue to do well with oral feeds? Does he continue to gain weight? Time will tell. Until then all we can do is remain patient (haha) and calm. 

Captain’s Log: Stardate 0612.16

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We held a meeting in the observation room last night, and had a good discussion about future progress.  The Admiral presented a new tracking mechanism to help establish a better routine, and take matters more firmly into hand.  This will allow us to space out the tube and direct/indirect lactose infusions and taper out at our own pace without feeling so lost.

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This worked excellently throughout last evening as the Chief Medical Officer returned to home-world to get some much needed rest, while Admiral Dad assisted me throughout the night and into the early morning with indirect lactose infusions.

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Everyone felt much better this morning, including myself, when the CMO returned.  Weight was up 20g as well.  We just need to exercise a little more patience and the ability to get into a good groove to make forward progress.  In other words…

Stay Calm.
Cap’n B

 

Captain’s Log: Stardate 0611.16

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I went through a whole night without a feeding tube for the first time.  While this is excellent news, I’m finding that since I’m so underdeveloped that I’m still not efficient enough.  It takes me about an hour to get through a bottle (indirect lactose infusion), and direct lactose infusions take MUCH longer than normal term babies as well.

So while my progress is great, being awake for an hour every two hours is draining both to me and to the Chief Medical Officer and the Admiral.  I need more sleep and energy conservation than most babies still or risk not developing properly.  We can’t all continue at this 1 to 2 pace, as much as we would like to.

So we did another tube this morning.  Every tube resets my home-world return chronometer.

We are all trying our best to get through these difficult missions.  Crew morale is really down right now.  It’s a delicate balance of progressing, but not progressing too quickly.

Stay Calm.
Cap’n B

Suck, Swallow, Breathe

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Premature babies like the Captain are born before they develop the ability to eat on their own. It isn’t that they just don’t know how to breastfeed, it’s that his brain has not developed the advanced motor skill of sucking, swallowing and breathing in coordination. Generally this skill is developed between 34-36 weeks gestation.

Take a moment and drink some water. Think about all the coordination that must take place in your body to simply to do that. You need to be able to suck, which requires muscles in your lips, cheeks and mouth to work in unison, and  swallow, which requires your tongue and throat to work together, and finally pay attention to your breathe. Notice how when you swallow you hold your breath for a split second. Now imagine you were born with Respiratory Distress Syndrome like Captain and imagine how confusing it is to have to stop breathing while eating.

A whole symphony of muscles and organs and breathing must work together in perfect harmony to feed a baby who was also born underweight and whose body must also grow to catch up. It’s a lot of work and it’s why the Captain’s intake is watched very carefully. It’s why there is a special newborn dietitian on the floor who make decisions about adding 2 or 4 calories per feed to the Captain’s breast milk tube feeds. It’s why each wet diaper is weighed, why he is weighed every night, it’s why everyone is very interested in my milk production, it’s why each tube (and now bottle) feed is measured out very precisely based on his birth weight.

So for the Captain it isn’t just that he and I must learn to breastfeed together, it’s that his brain has to learn to coordinate parts of his body, its that he must learn to eat, period. When he learns how to eat by mouth (oral feeds) and not a tube, and does so for 48 hours in a row, then he is ready to come home. He has been doing extraordinarily well at his oral feeds. He has surpassed 50% oral feeds (meaning 4 our of 8 of his meals are done via breast or breast milk in a bottle). So the captain’s time in the NICU may be coming to a quick end, or he may plateau at his current rate and we may be here for some time to come.

As most parents of newborns find, I am sure, it’s the Captain’s world and we are just living in it.

 

Admiral’s Report (Unofficial): Stardate 0610.16

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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.