January 18, 2011 - Update 3

We just talked to the surgeon and he was very happy with the repair. They waited for a little while for some bleeding to stop before they closed him up. The bleeding is not uncommon and stopped just fine, so he should be heading to recovery shortly.

He told us that he had never seen a diaphragm need to be re-plicated, but he said that with Caleb, nothing surprised him. At least he knows Caleb!

I will post again tonight after I get to sit with him.

Tuesday, January 18, 2011 - Update 2

They are now done with Caleb's heart repairs and things went very smoothly. He is off bypass and his heart started right back up with very little medication. His pulmonary pressures are normal - not low normal, not high normal, just normal. They are very happy with how things went.

The only problem was that they couldn't get a central line in so they had to put a line in through his chest directly into his heart. This might slow down our release from the PCTU and move back our holding possibilities. It will not slow us down from anything else though. It is not surprising that they couldn't get the central line in because the vessels in his legs have been messed with so many times already.

We are now waiting to meet with the surgeon.

Tuesday, January 18, 2011

We got our first report. The nurse practioner that brought us our news was our favorite NP Louise - so we will consider that a good sign!

From the chest x-ray, the cardiologists noticed that Caleb's left lung had raised so they ended up putting some more stitches in to hold it down while they are in there. He is on bypass now and they have not started work on his heart.

Louise did say that Dr. Ohye was very happy with what he has seen of the heart and pulmonary arteries. We should get another report shortly.

Monday, January 17, 2011

Everything went very well today.

When we got to the hospital, Caleb got a chest x-ray. Luckily, we have done that before because it is a horrible thing to watch if you aren't ready for it. They strap the babies with their arms above their heads and velcro them to a harness that looks like some kind of torture device. Needless to say, Caleb did not find it amusing.

Next, we met with the Pediatric Cardiology Fellow. He took Caleb's history since we left the hospital and asked all kinds of questions that have been asked several times before.

We then went for his sedated echocardiogram. The nurse gave him a drug through his NG tube - no pokes - and he was asleep within minutes. In case I haven't explained before, an echocardiogram is like a fancy ultrasound of the heart. There is no pain involved, but the little guys don't like to lay on their backs and be covered in ultrasound gel while someone runs a probe all over their chests. As soon as they finished and were cleaning him up, he woke up. The nurse warned us that some babies are crabby and some are fine. She compared it to the way adults get when drunk. Come to find out, Caleb is a really happy drunk and finds himself to be quite the ladies' man. He flirted and babbled with the nurses for a good ten minutes while they did his EKG. The EKG is also painless, unless you count taking off the stickers.

We met the Pediatric Cardiologist that is in charge on the floor for the next two weeks and went over the findings. Caleb's heart structure looks fine and the good side is working properly. We discussed what they will be doing tomorrow in more detail. I asked about the possibility of damaging the nerve that controls the right side of his diaphragm and he said that is is very remote. I was very happy to hear that, because if that is damaged, it would likely require him to be on a ventilator for life.

Next, we met with the anaesthesiologist to fill out paperwork and go over when to stop Caleb's medications and feedings for tomorrow. Luckily, he can eat until 3:15 am. He should not be terribly hungry tomorrow morning when he goes in.

Our last stop was to have blood drawn. Caleb screamed like a banshee, but they got him on the first poke with no problems.

We spent the rest of the day at the Ronald McDonald House hanging out. Caleb talked to everyone we met and was in a really good mood. Hopefully, in a week or two from now, he will be back in a good mood and ready to head home.

We have to be at the hospital at 6:15 tomorrow morning and Caleb is the first case scheduled for surgery. I will try to post something as soon as we get news. Thank you for all of your prayers!

Sunday, January 16, 2011

Asleep in the playpen at the Ronald McDonald House in Ann Arbor


Getting my diaper changed by Aunt Beth

We made it safely back to Ann Arbor. Phil is home with the Big Three and Phil's sister Beth came to Ann Arbor with Caleb and I. Beth is helping me out with all of the logistics of trying to get moved in with a baby that hates to be left in his car seat and that turns a funny shade of blue when left crying for very long. Considering I needed to make four trips to the van to bring all of our stuff in, I really needed her. Thank goodness for family once again.

Caleb has still been doing well if you ignore the blue part. His oxygen saturation was 74% on Friday when the visiting nurse checked him out. As long as he is calm, happy and not wiggling too much, he can still get good numbers. His weight was 11 pounds, 8 ounces. Everything else looked fine.

Caleb did take 8 cc's of milk from the bottle on Saturday, so we still might be in a good place for bottle feeding after the surgery. That was a huge relief for me. We will deal with it if he never gets the bottle feeding, but it will be much more pleasant if he does get the hang of it.

I will post the results of tomorrow's marathon of doctor's appointments. Hopefully all goes well and we will still be on track for surgery on Tuesday. As much as I dread him having the surgery, at least it will be over and we can start moving forward.

Sunday, January 9, 2010

Caleb's NG tube is out because he finally got some professional pictures today. We got some pictures with the tube in because that is who he is right now, but we also wanted some without the tube so we could see his handsome face. I will have some great photos to post soon!

Caleb got his second RSV shot on Friday from his visiting nurse. She is a great lady that always feels bad giving him shots. She apologized and gave him a kiss before she left.

Caleb's blood oxygen saturation levels were lower again this week. It is definitely time for the next surgery. He ranged from 59% to 76% - not quite the 70% to 80% we want. He is still growing. This week he weighed 11 pounds, 2 ounces. We have broken the 11 pound mark!

Right now, Caleb has absolutely no interest in taking a bottle. I am a little nervous that he is developing an oral aversion as a result of his reflux. We have decided not to push the bottle and wait until after the surgery. Hopefully, with the increased energy he should have after the surgery, he will be more successful with the bottle and realize it is a good way to eat. Right now, we are kind of in a Catch 22 situation. He has reflux because of the NG tube, but is not interested in the bottle because of the reflux, requiring us to keep the NG tube.

Next week at this time (as long as Caleb doesn't get sick), Caleb and I will be in Ann Arbor. We have to be at the hospital at 6:45 am on Monday, so we will travel over on Sunday. On Monday, he will have an echocardiogram, an EKG, bloodwork, and will meet with the cardiologist. Luckily, nothing he has on Monday will be very invasive, so I will get to stay with him all day and he will come back to the hotel or Ronald McDonald house with me on Monday night. We will head over to the hospital at 6:15 am on Tuesday for his surgery. He is the first case on Tuesday.

I will try my best to post next Sunday, but depending on the weather and Caleb's ability to settle in, it may not happen.

Sunday, January 2, 2011

Caleb "exercising" in his new seat - Caleb has to hold up his head and use his head, neck and core muscles to sit in this seat. Hopefully this will strengthen some of his muscles that have been slow in developing.

Things are still the same with Caleb. His nurse's appointment will be this coming Friday so he can get his next RSV vaccine. He is still bothered by the reflux, but we can work around it by laying him on his tummy on our chests while he eats. Another benefit of the NG tube!

As the new year begins, we would like to say thank you to everyone that has followed and prayed for Caleb. We have been so blessed with the support we have received from our friends, families and the new friends we have met (or never met for that matter). Phil and I can never thank you enough for helping us through the low spots and celebrating the good things that have happened.

I have been asked what this next surgery will entail. The abridged version is that they will disconnect the Superior Vena Cava from his heart and dump it into his pulmonary artery and remove his shunt. This will send the blood from the top part of his body directly to his lungs, bypassing his heart all together. Following is a link to the U of M informational page for Caleb's condition - Tricuspid Atresia. If you scroll down to "How is the problem treated", Caleb had the Blalock-Taussig shunt as his first stage surgery and will be having the Hemi-Fontan on January 18th.

Tricuspid Atresia Explained