Three Pounds Plus

Here is a long-overdue update on Baby Robbie...

We love this little guy so much! Even though he isn't living with us yet, and even though we don't get to cuddle him as much as we normally would cuddle a new little baby, we have really bonded with Robbie, and we adore him. When we're at the hospital we love to stare at him, and we participate in his care in every little way we can--taking his temperature, changing his diaper, cleaning out his little mouth with a tiny sponge, brushing his dark hair with a little toothbrush. When we're at home, we think of him, miss him, talk about him, and pray for him.

Ups and Downs

On one of Robbie's first days in the NICU, a nurse explained to us that there would be good days and bad days. She warned us that even though some days we would come in and he would be doing quite well, that wouldn't mean there wouldn't still be setbacks. There would be bad days too, but that wouldn't mean that he wouldn't get better. That is exactly how we would describe these first couple weeks...

The Setbacks

Since Robbie was born, he has had quite a bit of trouble with his lungs. Of course this isn't surprising for a baby born so early. At various times he has had the assistance of a ventilator, a CPAP machine, and he has also been given surfactant a couple times (read more about lung problems in premature babies). Currently, he is off the ventilator, and breathes on his own, receiving help from a nasal cannula. There is still a significant concern regarding his lung development and function, but it is being watched and treated closely.

When Robbie was about 6 days old they conducted a brain ultrasound to determine whether he had any brain bleeding after he was born; this is a major concern for premature babies, so it was a standard test. Unfortunately, it was found that he had a Stage 4 Intraventricular Hemorrhage (IVH). Stage 4 is the most severe type of bleed, and means the chances are pretty high that Robbie will have long-term complications because of it. At this point it is impossible for us to know what the problems will be or how severe they will be. They could range from lack of coordination to Cerebral Palsey to learning disabilities to mental retardation. There is also a small chance that he will have no problems at all. This news has been very difficult on us. It's especially tough because we have no idea when we will know anything more specific. Problems could surface anytime over the next few months, or not appear until he is one or two, or even when he gets to be school age.

The Good Days

We were so happy when Robbie was taken off the ventilator. Soon after that, they also took out his PICC line, making the feeding tube (with my milk) his only source of nourishment. They have gradually increased the amounts he gets at each feeding; so far he has tolerated his feedings well and has steadily gained weight. He is now just over 3 pounds.

One of the best days was when Robbie was a week old and we got to hold him for the first time. Up to that point we had been waiting for him to be stable enough and to be off the ventilator. We generally do "kangaroo care," which describes the skin-to-skin method of holding, which helps to keep him warm and helps with bonding as well. At first we were only able to hold him 2-3 times a week, but recently started holding him every day!

Of course we forgot our camera, but snapped a few pics with a phone...

Visits

We aren't able to spend all of our time at the hospital, but we've managed to work out a schedule where I visit in the morning, and Chris and I go together in the evenings. This way, we still have a small degree of normalcy in our home after school, at dinner time, etc.

For the first week or so, we rarely saw Robbie awake; he always looks so cuddly and cozy when he is sleeping.

Here are a few shots from a nap he took yesterday

But lately he's been awake and alert a lot more

A couple times a week, Tommy and Michael come along for the hospital visit. They love to see the baby, even if their attention span isn't very long.

Look closely at the bottom left picture to see how tiny Robbie looks compared to his older brothers:
(click to enlarge)

Unfortunately David is too young to visit the NICU, but here's a picture of him waiting in the hallway. He's trying to grab the camera to see pictures of the baby. Every time he sees his pictures he says, "Baby Robbie" or "I love you, Baby Robbie."


Gratitude

We are so thankful for the blessings we have received. It's difficult for us to see Robbie so ill, and to imagine the types of problems he may have in the future, but we have felt peace, knowing that God is watching over us, and has a plan. We don't know what the future holds, but we have faith that things will work out.

We are also extremely grateful for the outpouring of love and support we have received from family and friends. We had relatives who came during the first week and helped cook, do laundry, set up the kids' new Wii (they need a distraction, right?), sort baby clothes, and organize drawers, cupboards and closets. Their hard work brought so much peace into our home. Many members of our Ward (local church congregation) have cooked meals for us and signed up for turns to take care of our children while we are at the hospital. Countless other friends and family members have offered prayers and kind words of comfort and support. Although we haven't been able to respond to everyone, we have appreciated everything so much.

One more shot of our little guy...

We love you, Baby Robbie!