Prognosis
Parents are usually told to plan for their premature baby to be discharged from the hospital sometime around the baby's original due date. It could be a bit earlier or it could take a bit longer, depending on a myriad of factors. Robbie's due date was last Sunday, Nov 2. We were aware for the few weeks leading up to it that he most likely wouldn't be home by then, so it's disappointing, but not a shock to us that he's still at the hospital.
Latest phone-photo
(It's tiny because I'm having trouble posting it on the hospital computer; I'll try posting this in higher resolution later)
Adjusted Ages
Now that Robbie has passed his due date, he is referred to as "full-term." For the next few years, for purposes of doctor's visits and developmental evalution, we will refer to his
actual age (now 2.5 months) and his
adjusted age (now 3 days). His behavior, growth, and developmental milestones will match up more with his adjusted age than his actual age. This means right now, he can barely hold his head up, makes eye contact with us briefly--but does not hold it, and is not even close to smiling at us, as most 2-month-olds would be.
Progress
The good news is that he is getting closer to coming home. The fact that he was on a ventillator, has had persistent lung problems, and has required supplemental oxygen for such a long time
confirms that he has Bronchopulmonary Dysplasia--aka "Chronic Lung Disease." It is typical for premature babies to have lung problems, and they are always at risk for future lung issues like Asthma or
Bronchiolitis (caused by the
RSV virus); he now fits into an even higher category of risk for these problems (to try to protect his lungs, even when he does get home, we will not be taking him anywhere until Spring).
One of his main lung symptoms--tachypnea (fast, labored breathing) has finally significantly improved, and he is now receiving only a scant amount of oxygen through his nasal cannula--a low enough setting that he can go home on it. At this point, feeding is the only major thing keeping him in the hospital.
As soon as he can take all of his feedings by mouth, and continue to gain weight for a few days in a row, he'll be ready to come home. Teaching him to eat is turning out to be a long, drawn-out, and exhausting process.
BreastFeeding
Robbie is fed every three hours--day and night--through a feeding tube. For the last month or so, for two of those feedings--one during the day, and one in the night--we have tried breastfeeding. These attempts have typically been unsuccessful because of his lung problems and rapid breathing. Now that his breathing is under control, and he is older (technically a "full-term" baby now), he has more stamina, so we don't have to limit ourselves to trying twice per day.
Thanks to a lot of help from friends and family, I am now at the hospital all day every day, so that he can at least attempt breastfeeding at each feeding time. During the last week and a half, he's had about 6-7 successful breastfeeds, but lots more frustrating, unsucessful attempts followed by tube-feeds. We're very encouraged by the fact that he is indeed capable of breastfeeding; he just has a few issues with the proper latching and sucking technique, and we will just keep working at it--with the help of the nurses, lactation experts, occupational therapists, physical therapists, speech therapists, etc. It's quite an exhausting process, but I am determined to have him breastfeed; there are so many potential problems he may have in the upcoming months and years, that we want to provide him with every possible advantage we can.
Bottle-Feeding
A few days ago, Robbie learned to take a bottle, which he now gets once a night. It is important for him to aquire and practice this skill so he won't lose it, but we are
hesitant to offer the bottle more often, because we don't want it to impede his breastfeeding progress. Eating from a bottle is easier than breastfeeding--that is to say, it's easier for a baby to "cheat" and get milk without using the proper latching, sucking, and swallowing techniques. I want to make sure that he perfects these techniques not only so he can breastfeed, but so his development can progress optimally (because Robbie had a brain bleed, we have to be very focused on every aspect of his development and motor skills, and that includes sucking and swallowing).
Future Feeding
Even when breastfeeding is established and he comes home, he will have bottles on a regular basis, because for a while he will need supplemental nutrition (his bottles will be made from my breastmilk, fortified with formula concentrate for extra calories). This means there will
definitely be some mixture of breastfeeding, pumping, and bottle-feeding going on at home. Keeping the bottle-feeding to a minimum will also keep the pumping to a minimum, which in turn will help me maintain my sanity. (Just imagine... breastfeeding, bottle-feeding, pumping, washing the pump parts, not to mention diaper changes, 3 other kids, etc.)
Keeping at It
This last stage of the hospitalization is demanding and exhausting. As unbelievable as this may sound, I didn't realize until late Monday night that election day was the next morning--so that just confirms that I am officially out of it. We
continue to be grateful for all of the love, support, and prayers on our behalf; we truly feel the strength that comes from it, and we really need it!
We brought Robbie home yesterday. He'll be on oxygen for a little while, and we'll have to keep him home all winter, but we're thrilled to have him with us!
There are more details to share, but for now they'll have to wait
We had a great visit with Robbie. Tommy helped take his temperature, Michael helped clean out his mouth, and they both enjoyed watching him get weighed.
