Today Winnie Palmer Hospital for Women & Babies, James’s current address, is celebrating its first year anniversary. We are very fortunate to be at this state-of-the-art NICU with all its great doctors.
James has quite a rolodex of specialists, and it’s growing all the time. Besides the neonatalogists that walk around looking at all the babies (we call them the posse), he has his personal neonatalogist; his endocrine team, which includes at least five different people that I’ve met so far; his neurologist and neurosurgeon; his physical therapist, occupational therapist, and developmental specialist; his social worker; his insurance liasion at the hospital, and the one for after the hospital; his geneticist; his cardiologist; and today I met his hematologist. In addition to all these, James has had over 28 different nurses.
The hematologist was called in to check on his continuing anemia. You may remember he had this problem when he was born and had to get a transfusion of John’s blood. He has continued to be anemic, but hasn’t shown any symptoms of low blood count, so they haven’t been too concerned. Dr. Eslin said James is definitely making red blood cells now, but he doesn’t know why he continues to be anemic without getting another reading to compare (next week).
It could be because continually high blood sugar makes red blood cells more fragile. It may also be because James is getting pricked every two hours (!) for his blood sugar readings plus a couple other times a day for small vials of blood to test for sodium or other things. (Yet who would have thought the old man to have so much blood in him?) Dr. Eslin says James’s red blood cell factory is working, so hopefully he can catch up with the demand.
Today James is perfecting the trick of crying so that I will pick him up. If he’s really learning to manipulate me, I don’t mind. It’s fun to hold him. I like to think of myself as the cuddling specialist.
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This weekend James made lots of progress with breastfeeding. He latches successfully, and his suck is much better–not consistent, but stronger. He was crying a lot at first, and then he would latch on and just go to sleep. I think I saw the moment that he figured out what to do, because he sucked a little drowsily and suddenly opened his eyes up really wide like he was surprised. It was like the light bulb went on.
In other areas things are progressing more slowly or even regressing. You can see from the chart that his weight is down, mostly from loss of water before getting another ADH shot.
While the IV is still out because his blood sugar hasn’t been over 300, it is now too low (in the 30-80 range, where below 45 is a problem). The endocrinologists have tried to tweak his feeding schedule to get his sugar reading little higher by having him feed every two hours instead of every three. Now they are talking about skipping a Lantus shot tonight and possibly trying out a different type of insulin altogether.
He had a couple high heartbeat readings so they called in a cardiologist and did an EKG. One of them was from the laptop interfering with the sensors, and the other wasn’t too serious. The EKG read that his heart was normal. This is just being monitored for now.
He has a bump on his forehead from an old IV spot that seems to be slightly infected, so they are watching that.
He has been doing more crying lately, which makes his heart rate rise. He is becoming known among the nurses as a loud cryer, too, so I guess his Lord (Abby’s maternal) heredity is finally surfacing. Today he was inconsolably mad until I finally just took him out and held him. It’s kind of cute but sad at the same time. He’ll kick his legs up when he’s mad or excited about sucking on his paci, and it makes the little bear footies go up and down.
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Last night we expected James’s weight to drop back a little after gaining 213 grams on Friday, but he went up to 4 pounds 1 ounce.
If that were not exciting enough, I was surprised to notice no IV tube going into him anywhere and the insulin IV drip machine gone. I asked the nurse, who said when his last IV went bad his blood sugar numbers were ok. James is such a “hard stick” as they say (hard to find a big enough vein for the IV) that they decided to wait until he needed extra insulin (a high sugar reading) to put a new one in. He hasn’t needed any extra IV insulin for about 2 days now, which means the insulin shot (the Lantus) is keeping his sugar levels low enough in a steady manner.
On the third front of diabetes insipidus, this morning Dr. Yang said it looked like he needs the current dose of ADH (anti-diuretic hormone) shot every 48 hours, which means they are getting that dose right as well. However, he said he’d like to figure out the right amount in order to give it every 24 hours, so he will keep playing with that dose.
So, good news with his weight, blood sugar, and water retention. We are rejoicing!
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We arrived this morning at the NICU to find that James had put on 213 grams (almost 8 ounces!) in 24 hours — now just shy of 4 pounds! The nurse weighed him 3 times just to make sure. He looks like he’s got a little more fat on his bones, too.
His last two blood sugar readings were at 57 and 142, which are both in the “good” range. Praise God! Thank you, those who pray for these things!Our Journey, Our Journey (chronological) | Comments (2)
James’s feeding tube was moved to his nose, and it doesn’t look as bad as I expected. But then the IV sticking out of the middle of his forehead looks normal to me now, so maybe I can’t be trusted. Nursing was still only mildly successful yesterday, even without the tube in his mouth. He just can’t open up very wide yet.
James made a new friend on Monday afternoon, his physical therapist, Phil. Phil is very soft-spoken and sings Winnie the Pooh songs to James while he moves all his joints back and forth. It’s like a little game, and Phil taught me how to play it with James.
Yesterday James’s nurse got me the info I needed to make a new graph of James’s blood sugar and insulin shots. I was looking for a pattern of how the Lantus affects his blood sugar levels, but it’s really hard to see one. I can usually see why his levels get low, but sometimes they seem to be high while the drug is at its peak effectiveness. Dr. Albertini says the highs often happen at night. The endocrine team is trying to regularize the times the Lantus is given so they can see the trends more easily, but the pharmacy keeps delaying it because they are unable to find a small enough syringe, etc.. The anti-diuretic hormone (ADH) shot also affects it beause it helps the insulin get absorbed.
All this is to say that the doctors are still trying to get the dosing correct on his insulin for the DM and his anti-diuretic hormone for the DI. Dr. Yang said high blood sugar readings are ok and won’t hurt James in the long run, and that the only thing we need to make sure of is that he doesn’t go too low.
The neurologist came by this morning and gave us an encouraging update. James’s brain is continuing to grow, and his skull sutures (edges) are now more approximated, or lined up, rather than overlapping. He said the better hydration James has due to the ADH shot should help his brain grow. He also said that right now it looks like James’s anterior pituitary is working, just not the posterior pituitary. The posterior makes ADH and oxytocin, which is thought to help with recognition, bonding, and trust (most of its functions are related to women–labor and milk secretion). It would be great if these were the only hormones we had to replace, but again, things could change when he gets older.
Check out the “How big is James?” link on the sidebar to see his weight chart. I can definitely see more fat on him now than before. He will be one month old tomorrow!Our Journey, Our Journey (chronological) | Comments (2)