Month in Review: September 2008

Welcome to Month in Review: September 2008, documenting events for our family history. In some ways it's been a difficult month, but things are going as smoothly as we could hope for...

• Michael (4) started preschool. I really procrastinated getting this set up, so I was quite worried that we wouldn't find a place for him. As it turned out, we found a great class with wonderful teachers (Miss Jacqueline and Miss Natalie). He goes Mon-Thu from 8-11. He and Tommy are at different schools, but they have the same schedule, days off, etc.
• About a month ago we found a terrific new pediatrician (Dr. Rigby) for our boys. Our main reason for this was that our former one was too far away. The timing has turned out to be fantastic. We got all up to date on immunizations, and now we're all set for when Robbie gets out of the hospital.
  
• Instead of Stake Conference, we attended a rather large regional conference at the conference center. It was a bit hard to keep all 3 boys reverent for the full two hours, but we were fortunate to hear President Monson speak.
  
• One day I came downstairs in the middle of the afternoon to find our front window was broken. After grilling my kids intensely for a few minutes--including a lecture on honesty--I finally realized that it was only the outside pane that had been shattered, so it definitely was not my kids that did it, but we have no clue who the real culprit was.
  
• The next day our car wouldn't start, and we had find a time to take it in to the shop, where it was determined that it needed a new starter. These kinds of things seem to always happen all at once, don't they?
• I was released from my church calling as a counselor in the Stake Young Women's Presidency. The presidency was dissolved due to the President's husband being called into a Bishopric. It's been an enjoyable couple years getting to know and love the young women and their leaders, but the timing of the release was quite convenient with all we have going on.
  
• Tommy and I spent a Saturday morning at a local game store Kid's Club activity, where we gather to learn and play some of the new and popular games. We enjoyed Gulo Gulo and Ticket to Ride.
  
• We attended Tommy's (7) parent/teacher conference. His teacher told us that he is great at math, which makes sense, since he has always been obsessed with numbers. She also said that he is a very good listener and remembers and follows directions the first time he hears them.
  
• We are thrilled that David (2) is now talking in full sentences. His cheeks are still so chubby that they seem to be dripping off of his face; it's quite adorable, really.
• My sister-in-law Stacy arrived (Sept 30) for a second visit, to help out so I could visit Robbie more often and for longer periods of time. We're excited to have her here.
  

Robbie has had some ups and downs. The best news is that he is growing very well. The hardest news was the finding that he had bleeding in his brain shortly after birth (I wrote about it here). Since I was too busy to post much, here's an overview of what happened with Robbie in September:

(click on photos to enlarge)

• By September 20, he had gained enough to be out of the isolette (covered crib). The main function of the isolette was to keep Robbie warm, until he weighed enough to maintain his own temperature without burning too many calories. His current weight (Sept 30) is 4 lbs 12 oz (a 2 lb weight gain since birth!)

The old isolette:The new, open crib:The upgraded new crib, much better for fitting all the wires and tubes:

• We started non-nutritive breastfeeding. In this stage he is offerred breastfeeding after I have already pumped my milk--this way he gets familiar with it, but isn't actually getting the milk yet (he is being fed my milk through an NG tube).
• Speaking of my milk, there is lots of it. We have filled up our allotted freezer space at the hospital, our own freezer at home is overflowing, and we have now begun begging friends to lend us some of their freezer space. I shouldn't really complain, because often mothers have a hard time keeping up their milk suppy through pumping alone. I pump every 3-4 hours, with a 5-hour stretch at night. It's quite a time commitment, but we are trying to give Robbie every little advantage we can.
  
• Robbie's main struggle seems to be breathing. He breathes on his own, with a nasal cannula providing extra oxygen, but his respiratory rate is very high. He consistently has fast, labored breathing, which doesn't seem to be affected by any attempted treatments. Hopefully it is something that will improve more as he and his little lungs mature. Unfortunately, until his respiratory rate slows down, he will not be able to learn to eat, because breast- or bottle-feeding require a suck-swallow-breathe pattern that is too difficult with a high respiratory rate. There would also be a risk of aspiration if he were try to eat while breathing so fast.
• We gave him his first bath. We learned to do swaddle bathing, which is a way to keep the baby wrapped up, warm and cozy in a fleece blanket while he is bathing, which makes for a very comforting experience, instead of a shocking, disturbing event.
• Robbie "passed" his first eye test. Premature infants are at risk for ROP--which could lead to blindness, because of damage to their retinas due to the high amounts of extra oxygen the babies usually require. So far, Robbie's eyes have matured almost completely without any signs of problems. He'll need to be checked once more in a couple weeks, but it is good new so far. Chris wrote about the eye test on his blog, here. (Warning: he included photos of Robbie's eye being held open with a tool, which some might find disturbing.)
  
• We have had so much help from our friends and local church members. Each week they sign up to help watch the 3 older boys so we can spend time at the hospital.
• Here's a typical day in our life: I wake up between 4-6 am to pump; sometimes I stay up, sometimes I get to sneak in another hour of sleep. Chris and I get the kids ready and each leave around 7:45. Between the two of us we drop off David (with a babysitter), Michael (we walk in and sign him in to preschool), and Tommy (at the bus stop if we're early, or at school if we're late). Chris goes to work, and I go to the hospital from 8:30-10:30. I then rush to pick up Michael from preschool and David from the babysitter. We have a normal day at home, including lunch, naps, playing, picking Tommy up, homework time, dinner, etc.; during all this time I have to make sure I don't forget to pump. At 7:30 pm, a babysitter comes to the house and puts the kids to bed so Chris and I can go visit Robbie from 8:00-10:00. The hospital is about a 15-minute drive from our house. By the time we get home I have to wait an hour or so to pump one more time, then collapse into bed, exhausted. On the weekends, we take the kids along for one of the visits.
• When we visit Robbie, we help care for him, change him, dress him, and hold him. We used to be limited to holding him a couple times a week, but now we get to hold him whenever we're there. He responds very well to being held, and his vital stats (O2 saturation, respiratiory rate) usually get better when we are with him.
  
• Once a week we attend a parents' class, where we meet other parents who have babies in the NICU, plus a few parent volunteers who have already been through it. We learn about topics like development, feeding, baby massage, coping, etc.
  
• It took a while, but this month we finally got primary nurses assigned to Robbie. Every 12 hours Robbie has a different nurse, so were able to choose 4 nurses who will always be assigned to him when they are working. It will be very helpful to have some consistency, and have people working with him that are familiar with how he is doing and can help us advocate for him.
• Who could help but love this little angel?

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!