lions and tigers and bears…flying!

Posted on July 31st, 2007 by Lamons Warren.
Categories: Our Journey, Our Journey (chronological).

This past weekend with our grandson had some high and some low points. Still uncomfortable from his surgery, James faced hunger pains as well on Saturday. Food intake finally began about mid-day, but in small, gradually increasing amounts that did not do much to fill his stomach at first. He had to content himself with sucking his paci to fill the gaps. His mood rose with the food supply, though, and by late evening he was feeling better.

With his feedings back up to previous levels, James was feeling more like his old self on Sunday and enjoyed a grunting match with Grandpa. James would grunt, Grandpa would grunt, and back and forth it went. This “conversation” seemed fairly satisfying to both of them, and I’m sure that is the way that communication begins between guys.

Monday brought several happy changes. James left his little plastic box, hopefully for the last time, and returned to a big boy’s crib. After the confined area of the isolette, the new space must seem immense to him. (It even did to us.)

Every crib needs a mobile, so Grandpa was finally able to set up one for James…a revolving, musical merry-go-round of little jungle animals. Judging from his first reaction, I believe his mobile may join Mr. Bee as a favorite thing. His eyes would follow one animal until he picked up the next in his peripheral vision and in turn follow it. His face reflected his amazement as he viewed the wonder of all kinds of creatures flying around over his head.

Another hurdle for James has been the five pound mark, and he cleared it again this weekend. With his stomach problems in the rear view mirror, we expect there to be no turning back this time. Our long weekend ended on the high note.

sweet baby James

Posted on July 28th, 2007 by John.
Categories: Our Journey, Our Journey (chronological).

(Grandpa Warren started all this when he re-wrote some lyrics of an original song from the 50s, “Mr. Lee,” and made it “Mr. Bee”)

there is a young cowboy

to the tune of “Sweet Baby James” by James Taylor:

There is a young cowboy who lives on the range
His bee and his rattle are his only companions
He sits in his crib and he gets stuck with Lantus
Waiting for mother, his diaper to change

As the blood sugar rises he sits with his toy
Thinking about nurses and bottles of milk
Closing his eyes like a good little boy
With skin that feels smoother than silk

Goodnight, you night-shift nurses
Rock a bye sweet baby James
Don’t put me to bed with an IV in my head
Would you get my glucose back in range?
And rock-a-bye sweet baby James

Now the 26th of April was covered with prayers
And every day since is a good gift from God
Though he’s not been outside, he’s seen most every pod
With a hundred days behind him and ten thousands more to go

There’s a song that they sing when they feed him his bottle
A song that they sing when they put him to bed
A song that they sing when they hold him and cuddle
It’s a bit like James Taylor once said:

Goodnight, you night-shift nurses
Rock a bye sweet baby James
Don’t put me to bed with an IV in my head
Would you get my glucose back in range?
And rock-a-bye sweet baby James


Posted on July 28th, 2007 by Abby.
Categories: Our Journey, Our Journey (chronological).

James had a rough day or so the afternoon and night after his surgery. He had several “seizure-type” episodes as the nurses called them, where he would appear to get mad, but his heart rate would drop instead of rise and his breathing would decrease. He would stiffen up, turn pale, and his eyes would be fixed (and not on Mr. Bee). Dr. Albertini knew this was not his normal behavior, so she changed his painkiller from fentanyl and gave him something to reverse its effects. Then she prescribed morphine, which has helped him rest much more easily. She was concerned about the possibility of seizures, so she ordered an EEG (electro encephalogram), which measures his brain wave activity. With 26 leads, most of them connected to his head, he looked pretty sci-fi.

she blinded me with science

So far, the seizures (or seizure-like episodes) seem tied to the fentanyl, and they have decreased substantially in frequency. His last one was sometime on Friday night.

We’re still awaiting the results of the EEG, but the other big news is that he’s finally able to bottle feed again in small feeds.

the great escape…almost

Posted on July 26th, 2007 by John.
Categories: Our Journey, Our Journey (chronological).

Today James turned 1/4, and he certainly made it a memorable one.

While everyone thought he was resting peacefully after the surgery, he was apparently plotting his great escape out of the NICU. Abby had left for a short break to go do laundry, and the nurse was just leaving his room, when James decided he had had enough. In one dramatic display of defiance, he pulled out the breathing tube from his mouth with one hand while simultaneously ripping out the IV in his head with his other hand. We’re not sure what his plan was for getting the isolette open from the inside, but some nurses quickly intervened and prevented any further mischief.

Though it’s mildly funny to imagine James actually plotting his escape after the fact, in reality it was a pretty traumatic afternoon, for both him and us. Yes, it really did happen as I described; we have eyewitness testimony from the nurse. Abby returned to the room about ten minutes after he pulled his lines out, while a respitory therapist was blowing some sort of vapor over him, and his skin was paler than normal.

He is okay, now. There was actually another IV in his foot, fortunately, and the one in his head was superfluous. The breathing he was pretty well able to do without the tube since the surgery was pretty quick and light on the anesthesia. We just took this sudden demonstration of willpower as an indication that he had a different idea of how he’d rather be spending his 1/4th birthday.

He spent the rest of the afternoon much more calm. Blood sugars have been on the high side but under control. He took a long nap, resting his head on a paper towel that absorbed the small amount “leakage” from the IV he pulled out of his head. Probably dreaming up the next scheme for how’s he’s going to bust out of here.

turning points

Posted on July 26th, 2007 by Abby.
Categories: Our Journey, Our Journey (chronological).

James was not allowed to eat all day yesterday, and today he had the surgery for pyloric stenosis. It went well. I was much less fearful this time than the last time he had surgery. They do this surgery 10-20 times a month, so it’s pretty common; in fact, it’s the most common and easily-fixed problem James has had so far.

Dr. Morgan, the operating surgeon, said they had not been able to feel his pylorus externally because it was small, but it was hard when they open him up, so he was fairly sure that it was the source of his problems. They had to knock James out and put a breathing tube in, which he will keep until he is alert and actively breathing on his own again. He is difficult to put the tube into, so they said his vocal cords may be swollen for a couple days. They are giving him pain meds to keep him out so he can rest. Hopefully the breathing tube will come out late today or tomorrow, and he will be feeling much better Saturday. He can’t eat again for a couple days.

We are back in pod 1 in an isolation room (all that was available–they have no windows but are single-occupancy). They are holding his big crib and room in pod 3 for his return after his breathing tube comes out. Oliver’s pictures and Mr. Bee are in his post-surgery isolette with him whenever he wakes up to see them.

In non-surgical news, I have been giving James all his shots, but I am not so good at it. It’s hard for me to figure out how to hold his leg down, pinch his skin up, puncture the skin, and deliver the shot all at the same time. Another hand to hold his paci in would be ideal, but that gets me up to 4 hands. I want to be able to do it by myself when we are home.

One I pulled his Lantus shot out too early and a tiny drop of the insulin was delivered on his skin instead of underneath. This drug is so concentrated that a mistake like that can really throw his blood sugars out of whack. My worst shot attempt was having to stick him 5 times for one med. His skin is pretty tough so it’s hard to get it in, and he kept kicking so I kept pulling it out in fear it would go in too deep. I felt terrible. It’s hard enough to give the shots when it’s done well, as all the nurses will attest.

Finally one nurse, in desperation I’m sure, found me this cool rubber foot to practice giving shots on. I learned that I can stick the needle in further than I thought I was supposed to, as long as I pinch up some skin. This will help keep me from pulling it out too soon or from going too deep and hitting muscle. I also learned how to draw up meds into a syringe. Another nurse advised me to pretend like I was throwing a dart and not hesitate when I stick it in. That was also good advice.

James has already reached some turning points. He is so long now (49 cm) that he has grown out of a couple of his preemie outfits, a fact most evident when he gets angry and stretches out to his full length (he also waves his fists alternatingly, like a boxer, which is very cute). Earlier this week James demonstrated an exciting new skill–he finally reached out and touched his dear friend, Mr. Bee!

He has overcome his tongue issues very well as far as eating goes, and we have achieved the goal of a faster feeding time. The occupational therapist was so excited by his progress to the regular nipple that she said it is much more likely that we can get him to breastfeed properly than she had originally thought. So that is a longer-term goal.The more immediate goal we have set for him is to keep his paci in his mouth by himself without pushing it out all the time. I ususally have to wrap him up with his blankets holding it in.

James is three months old today. Our hope is that today’s surgery is a turning point for him, and that after he heals and demonstrates stable blood sugar for a few days, we can go home. Many friends at the NICU have come and gone, and as much as we appreciate the excellent care we have here, we are longing for it to be our turn. Next Friday, August 3, will mark 100 days in the NICU. That’s one milestone we hope we don’t reach.



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