Tour of Caleb's wires

No one has asked me about Caleb's wires, but I'm sure some people have wondered. So, here is a tour of Caleb's wires:

The thing on his nose is the CPAP. The hat and the blue straps are used to keep the CPAP on his head and in place. When is his on the nasal cannula, he has 2 round flesh-toned stickers on his checks to keep the nasal cannula in place.

He has 2 tubes in his mouth. One is for his formula, the other one is to help suck some of the extra air out of his belly. (The CPAP blows continous air down his throat through his nose. The air can build up in his stomach. They don't want that to happen, so the put the wire into his belly to suck out some of the extra air.) The white tape is used to try to prevent the tubes from pulling out - it doesn't work that well with Caleb. He has found many ways to get those tubes out.

The wire coming out of his top of his sleeper is part of his central line. They use his central line for IV fluids and medicine.

Other wires not pictured:
He has probes on his chest. They track his heart rate and how many breaths per minute he is taking.
He has a bandage looking thing on his foot. That is his pulse-ox. It measures how much oxygen is in his blood. If there isn't enough, they increase his oxygen. If there is too much, they decrease his oxygen.

Now on to the good stuff:
He wore shoes for the first time yesterday! I know he doesn't need shoes, and the shoes are too big, but he is very, very cute in them. (The wire coming out of his shoe is attached to the pulse-ox.)

Last night's update:
He was put back on the CPAP last night. He started doing better soon after he went back on CPAP. His lungs were not pushing out enough carbon dioxide.
They upped his feedings to 7 ccs every 3 hours.
He was kicked out of his isolette last night. (He was cold a few days ago, so they put him in an isolette to help him stay warm.) Another baby needed his isolette, and since he is all about sharing, he let that baby have his isolette and Caleb is now back in a crib.
Caleb is now a giant 7 pounds, 9 ounces.

New, fresh, hot-off-the-press update:
10ccs!! They upped his feedings to 10ccs every 3 hours this morning. He has had 2 feedings today.
He is back on the high-flow nasal cannula.
His blood count was a little low, so he will have another blood transfusion later today.


Caleb's blog is always open for people to leave comments.

Nothing much has changed

Caleb's still doing great!! They upped his feedings today to 5ccs every 3 hours.

His liver test results are back. The results said exactly what the doctors wanted. He has "TPN damage" to his liver. TPN is what the doctors call IV feedings. The damage should correct itself after he is off TPN - that will be after he is on full feeds. Full feeds are about 75ccs (2 1/2 ounces) every 3 hours.

New pictures from last night. Notice his great shirt (from his Aunt Rachel). Cary wanted to be sure I told you that Caleb's pants have "Daddy's little helper" on them.

Birth story and recap of the past 3 1/2 months

Birth story
On October 6 (26 weeks, 2 days gestation age), I went to the perinatologist for a regular check-up. I found out that my cervix had shortened to about 1 centimeter (it should have been 4 centimeters). So, my doctor sent me straight to the hospital. They hooked me up to monitors and told me I would probably be on bed rest for the rest of my pregnancy. From the monitors, they found out I was in labor. They gave me some magnesium sulfate to stop my contractions. I also got steroid shots to speed up the development of Caleb's lungs.

On October 9, after 4 days of VERY strict bed rest, (I couldn't get out of bed for anything - no bathroom breaks, no showers, nothing) my labor started again. This time they couldn’t stop it. On October 10, at 3:31 p.m., Caleb was born. He was 2 pounds, 1 ounce, 27 weeks gestation age.

It wasn’t like you see on TV. Cary didn’t get to cut the umbilical cord. Caleb didn’t cry. The doctor didn’t put Caleb on my chest. It was very quiet when he was born. Caleb came out and the doctor passed him off to the NICU team. The NICU team gave him oxygen, cleaned him, weighed him, got his footprints, and did some other stuff. After they finished getting him ready for the NICU, they turned him to me quickly so I could get a peek of him. Then they whisked him away to the NICU. Cary went to the NICU with them to see where Caleb would be. He was not able to stay in the NICU. He had to leave so the NICU team could get Caleb situated.

After about 1 hour, Caleb was ready for us to visit him. The nurse wheeled me to the NICU with Cary. Caleb was tiny. He was in a closed isolette. He had wires all over the place. His eyes wore covered so he wouldn’t be over stimulated. We were not able to touch him. He was very small, extremely premature, and didn’t need any excitement. The nurses went into his isolette once every 4 hours to change his diaper and give him medicines. Other then that, everyone left him alone.


The sign on Caleb's isolette.


Caleb a few hours old.

The next day, my doctor discharged me. I was healthy and recovering great from the delivery and there was no need for me to be in the hospital. After 6 days in the hospital, I was ready to leave. Before I could be discharged I had to watch a video on how to care for my recovering and my new baby. But, I wasn’t taking my baby home. The video sucked. I hated it. It was awful to watch. Cary complained to the nurse, I cried. Then, we loaded up a cart with all of the stuff people had brought me and Cary wheeled me downstairs. Cary left me at the door while he pulled the car around and loaded it up. We went to see Caleb and we were finally able to touch him. Then we left, without Caleb.

We talked to one of Caleb’s doctors a few hours before we left. He told us Caleb was at risk for what seemed like a million things – learning disabilities, brain bleeds, blindness, deafness, infections, lung damage, liver damage, the list goes on. He also told us that he didn’t see any reason why Caleb wouldn’t live a good, full life. It was good to hear that.

Recap:
Since then, Caleb’s had a ton of problems due to his prematurity. When Caleb was a few days old, the doctors discovered a brain bleed (IVH). There are 4 grades of IVH. Grades 1 and 2 can correct themselves. Grades 3 and 4 can cause brain damage, will need surgery, and grade 4 can be fatal. Caleb had a grade 2 on one side of his brain and a grade 3 on the other side. The doctors watched the bleeds for a few days to see if they would correct themselves. Around the same time, Cary started feeling very tired and called his doctor. After some test, we found out that Cary had endocarditis (bacterial infection in the arteries of his heart) and needed to go to the hospital. Cary was in the hospital for 5 days and on IV antibiotics for 5 weeks after that. When Cary got discharged from the hospital, I took him straight to the NICU to see Caleb.

A few days after Cary got out of the hospital, Caleb’s doctors told us Caleb would need surgery for his brain bleeds. A few days later (on October 31), Caleb was transferred to Scottish Rite for surgery. At Scottish Rite, Caleb had VAD put in. The VAD is a small device that is put under his skin so the doctors can “tap” it to drain some of the extra fluid off Caleb's brain. They tapped it daily to begin with, then as needed – usually about every 3-7 days. The VAD is used on small babies who are too small for a permanent shunt. Some babies never need the shunt after they have had a VAD, some babies still need a shunt. The last time I talked to Caleb’s doctors, it is looking like he will probably need a permanent shunt.

Caleb was at Scottish Rite for about 2 weeks, and then he went back to Gwinnett. He did great after he got back. The day after Thanksgiving, Caleb came off his respirator and went on CPAP. He did great on the CPAP. While he was back at Gwinnett, they found out his legs where fractured. His bones were so immature and fragile that something as simple as the pressure from his muscles could have caused the fractures. Preemies heal quickly, so they were just careful around his legs for a few weeks and they healed own their own. While back at Gwinnett, I was able to hold Caleb for the first time. He was 6 weeks and 1 day old. Cary was able to hold him a few days later.


The first time I was able to hold Caleb.


The first time Cary was able to hold Caleb.

2 days after we found out about the fractures, we found out that there was a blockage somewhere in his intestines. He was very sick. He had to be put back on the respirator. On November 30, he was transferred to Egleston for surgery to find the cause of the blockage and to correct it. The doctors found out that he had NEC – an infection in his intestines that causes a ton of damage to the intestines and can be fatal. They removed about 6 centimeters of his intestines. He had an ilestomy (like a colostomy, but in the small intestines) for 6 weeks. Caleb had a rough few days after the surgery. He did start to turn around after a few days. The day after Christmas, he went back off the respirator and was on CPAP and nasal cannula for 1 ½ weeks! On January 12, Caleb had another surgery to reconnect his intestines.

He has had feeding issues since birth, and is continuing to have issues. He does not have any signs of disabilities from the brain bleeds, yet. The doctors told us we might not know about disabilities until Caleb is about 5 or 6 years old.

He has been growing like a weed! On January 19, Caleb went back on CPAP again and is doing great. He is regulating his on body temperature. On Jan. 18, he was finally able to start wearing clothes! On Jan. 19, he was moved to a crib! He is now about 18 inches long and about 7 pounds, 4 ounces.


Caleb on January 21. (Some of the puffiness in his face is from the CPAP, but most of it is just his cute chubbiness.)

Welcome to Caleb's blog!

I decided to set up a blog for everyone to read updates on Caleb. The carepages site is great, but limited. A blog is limitless! That means more pictures! I will update this blog every few days - like I have been doing with the carepages. Feel free to send this page to anyone.