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

Thursday, December 29, 2010

Yesterday, we found out that Caleb's surgery will be on Tuesday, January 18th.

The visiting nurse checked Caleb out on Monday. He was 10 lbs, 14 ozs. That means that he would have gained an ounce. I think that is a little misleading because last week I did not change his diaper before he was weighed and the nurse zeroed out the scale with a diaper this week. I am claiming three ounces for the last week - either way, it is going up not down, so that is good.

Caleb's oxygen saturation was about 70%. The low oxygen saturation and the slowing weight gain are the indicators that it is time for the next surgery. Now if we can just keep him healthy for the next two and a half weeks.

We think that he is having a little trouble with acid reflux, so the pediatrician increased his Zantac dose. Hopefully this will help. When he has a problem, he screams or looks like he is choking. It looks very painful for him and it scares me!

Overall, everyone seems happy with where he is at. He is getting such a personality and really likes to smile at new people. So far, so good!

December 26, 2010

Merry Christmas and Happy New Year!









We had a very normal week last week. I finished my Christmas shopping on Tuesday, we finished wrapping presents at 1:30 am on Christmas morning, the kids were up at 5:00 am Christmas morning - all of the usual Christmas stuff and it was wonderful to have "normal"!

Caleb's visiting nurse came to my office on Monday to check on him. His oxygen saturation was 76% and we felt a huge relief. We suspect that he is still dropping below 70%, but he is capable of the proper levels when he is calm and happy. His weight was 10 pounds, 13 ounces - closing steadily in on 11 pounds. Based on the information that I have found, that would make him about the 0.4 percentile, meaning 99.6% of babies his age are heavier than him!

We still have not heard anything from Ann Arbor, but I am suspecting that things are kind of quiet there because of the holidays. I am not so antsy about getting the surgery scheduled when I know that he is not constantly below his ideal oxygen concentrations. Maybe we will hear something this week, but I am not holding my breath.

In the past, I have posted updates or prayer requests for some of the other babies and families we have met as part of this journey. Colton and Ben came through their 2nd surgeries well and both spent Christmas at home where they belong. We were very excited to see that both of them were home from open heart surgery in less than two weeks. I still find that amazing and hope Caleb does as well as they have.

Right after Caleb's last surgery, I requested prayers for Gabriella and Emilio. I still keep in touch with Gabby's Mom and Gabby is doing well. She has a very rare genetic condition that very little is known about, but she is home with her family and enjoying her first Christmas. I never really met Emilio's parents, but knew that he was in rough shape. When Phil got the newspaper on Christmas Eve morning, there was a photo of Emilio's Mom and Dad and a story on his NEW HEART! Following is a link to the newspaper article. The surgeon in the article is Caleb's surgeon. The doctors and nurses in Ann Arbor are truly amazing and are definitely one of the best Christmas gifts we will ever receive!

Emilio's Newspaper Article

Sunday, December 18, 2010

Caleb is settling back in after his heart catheterization this week. I still think his oxygen levels are too low much of the time, but I don't know that there is much we can do about it. I guess if they stay too low for too long, we can put him on oxygen. If you know anything about baby faces and nasal cannulas, you know that this is torture for all involved. He spends all of his time trying to get the cannula out of his nose, we spend all of our time trying to get it back in.

We have not yet heard from Ann Arbor regarding a surgery date. I will update when I find out.

There is not much new to post about Caleb. At the hospital, he weighed 10 pounds, 4 ounces. He still is not doing so hot with the bottle and we have had no record setting bottle adventures this week. He smiles every day now - even at the hospital this week. He is cooing more often and sometimes looks like he is on the brink of giggling.

One year ago this week, we found out that I was pregnant. What a year it has been! It started out worrying about miscarriage. Then it changed to worrying about carrying twins. Then it changed to worrying about one baby with a serious heart defect. Then it changed to worrying about Caleb's surgery. Then it changed to worrying about Caleb's recovery. Now we are worried about Caleb's next surgery. It is no wonder that I have lost a large amount of hair this year!

Through it all, we have learned some amazing things. We have learned that God really will give us the strength to handle anything we encounter. If you would have told me that our family could be separated for over ten weeks, hours apart, through the start of school, I would have never believed it. We have learned how really special all of our friends and family are. From the benefit, to the prayers, to meals, to words of encouragement when we needed them the most - we are unbelievably lucky to have the people we have in our lives. We have been reminded that together our family makes a great team - Phil was amazing covering everything at home and the kids were brave and strong with their Mom and new baby in another city.

This Christmas, we are so unbelievably thankful for all of the blessings we have. We are so fortunate to have Caleb here with us. We are blessed to have the love of our family and friends. Thank you for all of your support and prayers and for making this a very special year for us!

Thursday, December 16, 2010

As Phil posted, the heart catheterization went very well. The cardiologist was able to get access to the veins and arteries in Caleb's groin. This is no small feat considering how abused these vessels are. If they were unable to get in through the groin, they would have had to go in through the vessels in his neck. Not only could that have caused scarring, but it would have also had the potential for damage to those vessels, reducing our options for future catheterizations.

The cardiologists were able to see everything they needed to see and everything looked the way they expected it to. The left side of his heart - the healthy side - has a good squeeze with very little leaking of the valve. The pulmonary arteries looked nice and open, with the exception of a narrowing right near the shunt. This is very common and is the result of the heart and vessels growing, but the shunt remaining the same size. The surgeon should be able to fix this as part of the next surgery. The hole between the right atrium and the left atrium of Caleb's heart - one that is not supposed to be there, but keeps Caleb alive - has a little extra tissue around it. The surgeon may clean this up as well so they don't have to go back in later to fix it.

Caleb did not come out of the anaesthesia very well, so we ended up staying in the hospital last night too. His oxygen saturations are supposed to be between 70 and 80%. Caleb varied between 42 to 82% yesterday. They put him on some oxygen, but he still had trouble maintaining 70% when upset (which was a good portion of the time). He was up a lot in the night and set the alarms off quite a bit.

I was getting worried that we might not be heading home today either. As of this morning, Caleb was still hovering around the upper 60's. When the cardiologist came in this morning, he just told us to keep an eye on Caleb and go home. Because he does ok when he is not too upset, I think getting him home and away from IV's, oxygen sensors and alarms is his best bet for keeping his levels where they belong.

We should be hearing from the surgeon's office in Ann Arbor shortly to schedule his surgery. As much as I don't look forward to having him go through surgery again, I am looking forward to not being constantly worried that his numbers are too low.

As I had mentioned previously, two of the babies that were in the hospital with us the first time have had their second surgeries recently. Colton was discharged from the hospital 8 days after his surgery! Ben is off all oxygen and working on feeding 7 days after his surgery. We are hoping Caleb follows their lead.

Thank you for all of your prayers! There are no words to express how much all of your support has helped Caleb and the rest of our family.

The heart cath. went fine, Jen will post more info tomorrow (my first blog post and I spelled everything right, Jen will be so proud).

Sunday, December 12, 2010

My camera is on the fritz right now, so here is a picture I stole from Grandpa Dougherty.

As you can see from his picture, Caleb is growing and getting more social. He has started to coo frequently and usually smiles when he is the center of attention. He likes to be held and to watch people.

His heart catheterization is scheduled for Wednesday morning at 8:30 a.m. We will check into the hospital on Tuesday at 2:30 p.m. The purpose of this procedure is to check out his heart in depth and check out the pressures in his lungs. The pressure in the lungs needs to be below a certain level for the next surgery to work.

The visiting nurse checked Caleb out on Friday this week. He weighed 10 pounds, 6 ounces. Everyone is very happy with his growth rate. He has actually grown enough that we got to increase his feedings. He now gets 80 mL every three hours. We have noticed that he is now starting to get hungry, instead of just being fed when the clock says it is time to eat. He still doesn't wake up for his middle of the night feedings, though. That is fine by us - he's still getting fed and hopefully his good sleeping patterns will stick as he gets older!

Caleb's oxygen saturations were back up to the mid 70's to 80. He definitely looks much better and seems to be kicking the cold. He coughs every once in a while, but he seems much less congested. So far, so good!

Caleb is making progress drinking from a bottle. Up until this week, his record was 17 mL and that was while we were still in the hospital. On Wednesday, he took 27 mL at one feeding. He went right back to not being interested until yesterday when he took 28 mL. He fell right asleep both times, so it must still be a lot of work for him. At least we know he can do it and hopefully as he grows stronger and gets a more efficient sucking pattern, he will be able to take more by bottle.

Caleb is on track to have spent 47 nights at home before heading back to the hospital and we couldn't be happier. We know of a lot of families that made return trips a whole lot sooner. We feel so blessed to have him here as a real part of our family. We know that we have many more nights apart, but in the end, there is a good chance that Caleb will get to grow up in our crazy family!

I will try to post this week on the results of the heart catheterization.