Sunday, November 28, 2010

Sunday, November 28, 2010

Caleb's new Harley hat from Grandma and Grandpa Wieland

Sleeping with Dad

Another juicy smile

Last week was another busy week. You would think with a couple of days off of work for the holiday and three days with no school, we could get caught up a little, but that does not seem to be the case. We did have a wonderful Thanksgiving and definitely have a lot to be thankful for!

The visiting nurse came on Tuesday. Caleb's weight was 9 pounds, 13 ounces. That is an increase of 5 ounces since last week. She came earlier this week which put it just after diuretics but before the 10:00 am feeding. We will have to see this week if he really had 5 ounces of gain or if some of it was timing. Either way, we are closing in on 10 pounds.

Caleb's oxygen saturation was 77% and his heart rate was 160. The heart rate was high, but he was pitching an epic fit at the time. Everything still looks good.

Caleb had been waking up with gunky eyes and on Thursday, he started to show symptoms of a cold. By Saturday morning, he was pretty snotty and his eyes were nearly gunked shut when he woke up. I was able to get him in to the pediatrician on Saturday morning. We got to see Caleb's regular pediatrician which was really good. Our kids have gone to the same pediatrician since Ella was a baby and I wouldn't trade him for a million dollars. He said that Caleb may have some pinkeye and told us to use some drops (we still have some from the last time Maeve had pinkeye, so I didn't even need to buy any!). He also said that Caleb's cold has not moved to his lungs and everything sounded just fine. It is crazy how scary a cold can be when you are dealing with a compromised heart and lungs.

Today, Caleb was looking and feeling much better. He was awake and smiling some today and much less congested. He has not been drinking well from a bottle at all, but drinking when you can't breathe through your nose is pretty tricky. Hopefully, he will keep feeling better and we can make some progress.

As hard as it is to believe, some of the babies that were born in August with Caleb are heading back in for their second surgery. Colton and his family are heading back to Michigan from Kansas for his pre-surgery work and his surgery scheduled on Friday. Our friend Ben is struggling and really needing his surgery that is scheduled for the next week. Both of these babies have a heart condition very similar to Caleb's, just the other side of their hearts. Please keep them in your prayers.

Just a note - because Caleb took so long in the hospital for his "first" surgery (consisting of the four surgeries) and is still so small, the doctors think that his "second" surgery will be delayed until at least February.

Monday, November 22, 2010

Sunday, November 21, 2010

Caleb is now three months old!

We had another good week last week. On Monday, we never did make it to the office, we just worked on paperwork and trying to get caught up. As you may guess, we didn't get caught up!

On Tuesday, the visiting nurse came and checked Caleb out. He weighed 9 pounds, 8 ounces. That is up 3 ounces from last week and a good weight gain for him. His blood oxygen saturation level was 77, right in his optimal range of 75% to 80%. Tuesday was her last scheduled day, but she is going to try to get us a couple more appointments approved with the insurance company. I hope it works because right now, she is the only consistent check on his weight and oxygen saturations, the best indicators we have outside the cardiologists office or hospital of how he is doing.

On Wednesday, the Early On lady came to assess him. In gross motor skills, he scored like a one month old. In social skills, he scored more like the three month old that he is. She gave me some more tips for feeding because we still have made no improvements. He still takes anywhere from 0 to 12 mL per feeding and then stops. She also showed me some exercises to work on building up his strength in his chest and neck. These areas are weak and may be contributing to his poor sucking skills. Overall, he assessed where she expected considering his slow start.

On Thursday, I noticed that his incision was looking a little funky. There was a knot outside his skin where the thread used for his internal stitches exited his chest. The area around the knot was starting to ooze a little and look different. His incision also looked more red than it had previously and more of the string from the internal stitches was becoming visible through his scar. The cardiologist office got us right in within hours and checked him out. The nurse practioner checked him out and removed the knot. The cardiologist looked at him and said that the incision looked OK. The nurse practioner said that she thought it didn't look bad, but that we should keep an eye on it and call if it got worse. The oozing has stopped and the redness has lessened, but now the areas where the string is showing are getting a little funkier looking. The gist I got from the nurse practioner is that it may be necessary to remove some of the internal stitches (they obviously don't dissolve) if his body does not like them. We will just have to wait and see how it turns out.

On Friday, I called the pediatrician to schedule an appointment to start Caleb's vaccinations. He has not had a single vaccination yet. He did not even get the newborn vaccines. They don't give any vaccines until six weeks after surgery, so the week after next will be the first time he is able to get them. The pediatrician's office is working with the insurance company to get the RSV vaccine covered by the insurance.

I have a sneaky suspicion that this is how things are going to go for a while. Fill out paperwork, follow up on paperwork, work with the insurance company, monitor Caleb's progress, schedule appointments, etc. Right now, we are the people directing his care. I hope this is what we are supposed to be doing. It is rather hard to go from the hospital where they may or may not tell you what is happening next to being home where you have to determine who is best suited to care for what is going on at the time. I hope that I understand what is coming in the next months well enough to make sure that we are covering all the bases and that nothing is left undone.

We have decided at our house that Caleb looks like Harold from Harold and the Purple Crayon. See what you think!

Have a wonderful Thanksgiving! This Thanksgiving, we have so much to be grateful for. We have four wonderful children now (not three and one) and we have wonderful friends and family supporting us throughout this journey. Thank you for your thoughts and prayers and please know that we are very thankful for you!

Sunday, November 14, 2010

Sunday, November 14, 2010

Dressed in camouflage like Grandpa

Finally smiling in a photo

Fancy outfit, crabby boy

Checking out Ella up close

Caleb is still doing very well. When the visiting nurse came last Tuesday, Caleb weighed 9 pounds, 5 ounces. That is a good weight gain for him. His blood oxygen saturation was around 82%, a very acceptable number for his condition. The nurse was happy with how he is doing.

Caleb does have a little bit of a runny nose, but it is only showing up in the morning. Hopefully it is nothing and will not cause him any problems. With three siblings in school, stuff is going to be brought home. We are trying to keep him as germ-free as possible, but it is very tricky. I find myself cringing and looking for Caleb whenever I hear anyone cough or sneeze. The Big Three got their flu shots last week (and were not very happy about it) so hopefully that will give us a little more protection.

Caleb has not made much progress on taking a bottle. He still has not taken more than 17 mL from the bottle at a feeding. We are meeting with the Early On program people this week to assess how far behind he is developmentally and maybe they will have some suggestions for us. He can suck, swallow and breathe, but he either gets tired or loses interest after a short period of time.

We are happy that he is settling in at home and we are getting better at figuring him out. The plan is to take him to the office this week so I can try to get some real work done. I am self employed and have been off of work too long. Luckily, I have a building of my own and have a spare office. Hopefully, Caleb will enjoy being a junior engineer, because taking him to daycare is not an option!

Sunday, November 7, 2010

Sunday, November 7, 2010

Asleep in Dad's lap

Why we love our church

Our major items of work now are trying to get Caleb to eat from a bottle and gain weight. Now that things are not constantly changing, the new weekly post will include our progress in these areas, some photos and reports on normal baby stuff.

Caleb weighs 9 pounds now. The cardiologist told me that normal babies grow about 1 ounce per day at this point for a monthly weight gain of 2 pounds. For heart babies, they figure they will only gain one pound per month. We will see if Caleb is up to the challenge.

He is doing better eating from a bottle. He eats between 10 and 15 mL per feeding (out of a total of 70 mL), but he now knows that the bottle contains food. For someone that had nothing by mouth for nine weeks, that is an accomplishment. Hopefully as he gets stronger, he will be able to eat enough to stop using the NG tube.

Each day, we notice that Caleb is awake, alert and not crying for longer periods of time. The kids enjoy him a lot more when he is not screaming!

Wednesday, November 3, 2010

Thursday, November 4, 2010

First bath at home

Asleep in the swing - Sorry the rotation is beyond my control

After Caleb pulled out his NG tube

I am sorry that it has taken me so long to post a new entry. It is amazing how far behind you can get in 11 weeks!

We have been very busy since we have gotten home. Between giving Caleb his medicines, feeding him every three hours, pumping milk to turn into his high-octane fuel and trying to keep him clean and dry, there are not enough hours in the day. Add to that a pediatrician's appointment on Monday, a visiting nurse appointment on Tuesday, a cardiologist appointment today and endless phone calls for insurance and billing issues, and you get a hectic week.

The great news is that Caleb is doing wonderful! The pediatrician said that he looked fine. For his age, he is at the 12th percentile for length and less than the minimum value for weight and head circumference. He weighs 8 pounds, 15 ounces, an increase of 1 pound, 3 ounces from his birth weight. He is being scheduled to get the RSV vaccine, which will hopefully give us a level of protection from the really nasty stuff that goes around in the winter.

His appointment with the cardiologist also went really well. His heart rate, blood pressure and oxygen saturation were all where they wanted them. His EKG looked normal for Caleb, not normal, but normal for Caleb. He goes back in one month for another checkup. The plan is to check his weight once a week to make sure he is growing properly. He will probably have another heart catheterization in January to make sure that his heart and lungs are acceptable for the second surgery.

Caleb has been fussy and has been sleeping a lot. He does have periods where he is awake, alert and busy watching what is going on. He is also smiling every once in a while. I have yet to take a picture, because I am too busy enjoying the smile to grab the camera. I promise to get one soon and post it. It is beautiful!

The kids are adjusting very well and other than Caleb being loud, they seem to enjoy having him home. It is amazing how quickly I have gotten back into the normal routine of home.

Phil and I would like to thank everyone for all of your help and support over the past months. We are so very lucky to have such amazing people that love and care for us!

My goal is to try to post a weekly summary on the weekend with new pictures so you can see how he is growing.