Crew Wesley Miller: Long and overdue Update!

Whoa! It's been a day or two or three? Crew's been "cruising" along the past few days like a typical premie. Never without some sort of issue or concern, but mostly typical premie stuff. He graduated to a crib a few days ago, and has been struggling with trying to keep warm. He has minimal body fat, and has to burn calories in order to stay warm. He's dressed, swaddled, wears a hat and has another warm blanket covering him, and still manages to be cold at times. This is a somewhat normal premie issue. He has been having "periodic breathing" episodes where he takes long pauses in his breathing pattern and subsequently drops his heart rate and his oxygen saturation and has to be stimulated to return to a regular breathing pattern. Again, this is an issue that we see with most premies. A couple things about his episodes make them a bit more scary than the average Joe. First, he's on the medication Propanolol, that lowers his heart rate. His resting heart rate has been running around the high 80s to 90s . . . most babies run around 120-140. So, when he drops his heart rate(brady's) with the periodic breathing, his heart rate drops really low to around 20 or 30. This is scary to see, but he brings it right back up with stimulation. The doctors gave him a loading dose of Caffeine (a drug to stimulate regular breathing), to see if this will minimize his "spells".

He's still on his nasal cannula at 1Liter with his FiO2 running around the mid 20's to 30's. He still tires really easily, but loves to snuggle and be held upright and on his tummy. He is becoming quite the breast feeder. He had one feed yesterday that didn't require any supplementing with the feeding tube. This is a great accomplishment. Hopefully he will start having more and more good feeds like this so he can get his feeding tube out.

He is still having a few SVT episodes . . . even with the medication. The episodes are only lasting anywhere from a few seconds to a few minutes. He either pulls himself out, or we help him to "vagal" out of it. The Cardiologist said this might be his "norm" for a while. We hope that as he grows and get's stronger, his heart will decide to choose the regular path with each beat, and not that darn accessory pathway.

His ANC (absolute Neutrophil count) has been trending on the low side since birth. This basically means that the number of overall white blood cells are low . . . or his fighting army isn't sufficient. This compromises his immune system making him more susceptible to infection. The doctors ordered a consult with the Hematologist. He said that for now, they aren't too concerned. If the low numbers persist, they might want to run more tests. His hematocrit (number of red blood cells) is also low at 25. He may need to have another blood transfusion. This is somewhat normal for premies to have low red cells because of all the blood that is taken for testing. The doctors want to give him the opportunity to make his own new red blood cells, which he is doing, but if he can't keep up, a transfusion will be needed. Again, this low HCT affects his stamina . . . making all activities a little bit harder. They tested his Thyroid . . . which is a tiny bit low too. Again, because he was so sick in his first few weeks of life, we're hoping this resolves itself.

Crew will be getting an eye exam this week to check for "bleeding". Premies are at risk because of their weak vessels for bleeding and scarring. The Eye doctors watch this closely, and if they see any bleeding, can surgically laser the area of concern to stop the bleeding, and prevent too much eye damage. Hopefully this won't be an issue with him because he was over 28 weeks at birth. But, because he was so sick . . . who knows what is to be expected.

He will also be getting an MRI soon to look closely at his brain for any potential damage from his illness. It seems like there is always something to be concerned or worry about. We all know that worry doesn't help, but prayers do! So, we keep praying for continued healing and progress.

Crew had a lot of "firsts" this past week. His first real breast feed, he moved to a crib, had his first tub bath, and his first 4th of July. Grandma held him for the first time, and so did auntie Dalynn. Lot's of photos to follow.

Holding hands during cares

Grandma holding Crew for the first time

Swaddled in warm blankets after his bath

He's all puckered and ready for kisses

Crew loves his binki and his binki buddy

Daddy is tired after a long day of work

Talk to the hand

"Auntie Dalynn" holding for the first time

Dad and mom giving Crew his first tub bath. The nurses put towels in tub for padding, and wrap him up to make him feel secure and keep him warm. There is also a heat lamp overhead to add some extra warmth.

He was so relaxed in the tub and didn't even cry. He kept his eyes closed until we shut off the heat lamp. You can see how well his little abdominal scar healed, but his cord still hasn't fallen off.