Robbie Report: Yes, We're Here... and Better than Expected!

November 13, 2008: Discharged from the hospital

February 2009: Thriving

We are all alive. Robbie has now been home for as long as he was in the hospital. He is doing amazingly well. That's the short version of the story. Here are the details...

Coming Home
Robbie's last few weeks in the hospital were incredibly hard on me. Of course the whole time he was there was difficult, but that last stretch was just a killer.

One of our last days in the hospital.

Feeding
As I explained before, the main struggle was trying to teach him how to eat. I had breastfed my other boys, but it was just what had worked for us--I never had any extreme determination about it. When Robbie was born, though, something just kicked in; I was very driven to give him the opportunity to nurse, to the point of becoming quite stubborn about it. When Robbie drank from a bottle for the first time (1-2 weeks before leaving the hospital), I just sat and cried. I know the doctors and nurses thought I was insane; it should have been exciting that he was even capable of sucking and swallowing, and by this point I had been attempting to breastfeed twice a day for almost two months (unsuccessful attempts are exhausting, believe me). Normally, I'm the type of person that would have said, "hallelujah, he finally took the bottle, now I can quit all this nonsense," but again, I just couldn't let it go... I started staying nights in the recliner by his bedside, I tried every method under the sun to help him learn to latch on and eat; I had lactation, speech, and developmental specialists helping me--the most frustrating thing was that there was no obvious reason why Robbie wouldn't nurse.
The conclusion: Robbie became a successful bottle-feeder, and was scheduled to go home. Then, the night before we took him home--he suddenly nursed perfectly! We took him home with instructions to continue to bottle-feed, but nurse twice a day. Within a few days, it was a 50/50 combination of breast and bottle (so we could supplement his bottles with a little extra nutrition).
Here's the amazing part: Within 3 weeks, Robbie was gaining weight and thriving so well that we switched to nursing exclusively, and from then on we have only fed him bottles when it was for our own convenience. Our pediatrician said she has rarely (if ever) seen a case where a baby that premature has ended up exclusively nursing. I still constantly have moments when I look at Robbie and think, "Wow. All that effort, and work, and heartache. We did it."

Oxygen
Robbie came home on supplemental oxygen, due to his chronic lung disease, and long history of tachypnea (rapid, shallow breathing). He was getting the smallest concentration of oxygen that the machines can give, at a very scant flow. He was on oxygen from the time he came home (mid-November) until early January. We knew he was getting better, which was encouraging, so for us the oxygen-experience was just a pain. Right after the equipment was picked up and hauled away--just as soon as I finished my dance of joy--I realized I had never taken any pictures of how it all worked. Basically, there was a HUGE (4-5 foot tall) tank in the room with a long tube that connected to the tubes in his nose. We had 25- and 50-foot tubing, so we would be able to walk around with him. But here's the catch: while he was on oxygen, we also had to monitor him to make sure he was getting enough. For this, we had a little sticker-probe attached to his foot, connected to a pulse-oximeter, which would beep anytime that his oxygenation levels went down. Unfortunately, the wire connecting the foot probe to the monitor was only about 3 feet long, so anytime we wanted to carry the baby anywhere, we had to carry the monitor with us. It had a shoulder-strap, but it was heavy and awkward... basically, for those first couple months we tried not to move Robbie around much more than necessary. And the beeping! We would hear it in our sleep (sometimes for real, sometimes not). Thank goodness that's all over with!

(I managed to find one picture of the oxygen monitor)

The best part about getting Robbie off the oxygen was seeing what his face looked like without tubes in his nose!

Development
Robbie is now 6 months old. Because his due date was in early November, his "adjusted age" is 3 months old. Basically, the time he spent in the hospital was just a time for him to do the growing and developing he would have done in utero. When we brought him home, it was just like bringing a newborn home; he has now developed as much as another 3-month-old would have.He is now 12 and half pounds--not even on the charts for his actual age, but right in the 50th percentile for a 3-month-old baby (that's even higher than his brothers landed on the charts!) His development up to this point has been completely normal... he looks at us, smiles, coos, stares at his brothers, laughs, poops through all of his outfits, spits all over our outfits...

When he first came home, we took Robbie to the doctor once or twice a week, then weekly, then once every other week, to make sure he was growing and developing well. We're now down to monthly visits (where he gets his RSV shots). We've also been keeping an eye on his blood pressure. It got high right before he came home, and he's been on medication, but it seems to have gotten better.

Basically, our pediatrician is looking at him as being completely well. As far as his brain-bleed goes, we have not seen any obvious effects from it so far. Of course there are still things that could come up, and he will be monitored closely in the coming years. Next week, as part of a special Neonatal follow-up program, Robbie has an all-day check-up; he'll be seen and evaluated by all sorts of specialists (speech, hearing, vision, neurology, etc.). He will continue with these sorts of appointments every 6 months or so for the next few years.

Cooped Up
Despite the fact that he is doing so well, Robbie is still at risk for lung problems. Since it is RSV season, we have to be really careful about exposing him to germs--contact with a common cold could land him back in the hospital. We have been really strict about it--he only ever leaves to go to the doctor's office--no errands, no outings, no church (Chris and I take turns). We can't have children (other than our own) in our home, and we have to screen the adults that come over ("Have you been sick?" "Have you been around sick people?" "Would you mind washing your hands again?"). It gets tedious, but it is worth it. Despite the fact that Chris, the boys, and I have had our share of colds and coughs, Robbie is holding up great. The most we've noticed is a little congestion, but nothing that has made it to his lungs. It's a good thing that he's ok, because we are going bananas! Cabin fever is more than just a term to me now; it is my life. I can't really complain though... I have great friends who take turns picking up Tommy and Michael from school; as always, Chris is terrific about taking the older boys out as often as he can; and really, I'm just being forced to take it easy--which I definitely needed. The first month or two after Robbie came home, I felt like I was just recovering from the whole ordeal. Now I'm just counting down the days until spring. I can't wait to be out and about! (In the meantime, I need to figure out how to attach some gym mats to my walls, because the boys are literally bouncing off of them...)

Blessed
These three guys have been absolutely amazing.

They handled the hospital experience very well--flexible with changing schedules, willing to have us be with Robbie, so good for their babysitters. We haven't noticed an ounce of jealousy or resentment. One of them is always saying, "Robbie is so cute," or "I love Robbie," or just patting his head. They still pray for him constantly--that he will keep getting better and that he won't have to go back to the hospital.

And we know they aren't the only ones praying for us. This experience has taught us firsthand that it's not just trite when someone says, "Remember so-and-so in your prayers," or "You're in my prayers." We have literally felt all the prayers being offered in our behalf. I especially felt a tangible strength, helping me through each moment while Robbie was in the hospital; people always asked me how I was surviving it, and I know it was because of faith and prayer.

Thank you.