Thursday, December 30, 2010

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!

Sunday, December 26, 2010

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 19, 2010

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

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.

Wednesday, December 15, 2010

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

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.

Tuesday, December 7, 2010

Monday, December 6, 2010

Today's cardiologist appointment was a good news/bad news kind of day.

The good news is that I can read my baby. The bad news is that his oxygen saturation levels were low as I had suspected. For the most part, he was at 70, but he dropped into the upper 50's while he was screaming during his EKG.

The good news is that he is growing well. The resulting news (not really bad) is that we have been fast forwarded about a month. His heart catheterization will probably be next week, not in January. His next surgery will probably be the middle of January, not in February.

Caleb's cold is playing a part in the lower saturation levels, but they feel that his growth is the bigger factor. The cardiologist feels that Caleb is on the mend from the cold and we will just keep an eye on him to make sure he is not having to work too hard to breathe. So far, he still looks ok.

If Caleb's cold is gone by next week, the plan is to do the heart catheterization in Grand Rapids on Tuesday, Wednesday or Thursday. Caleb will be checked in to the hospital the night before to get IV fluids to avoid dehydration. He will have his heart catheterization and will stay the night after in the hospital. Some of the other babies we know that have traveled to Ann Arbor for their heart catheterizations were in and out the same day, but with Caleb's previous experience with complications, we are not complaining about the extended stay.

Caleb had both an EKG and an echocardiogram today. Both looked fine for him, so we are not dealing with any new complications.

The Early On therapist came today as well. Caleb was not very cooperative because he was so tired from his marathon doctor's appointment, but she was able to evaluate his sucking skills. She is quite confident that with some work, we can get him to drink from a bottle and maybe even breastfeed.

Overall, today was a good day. It is scary knowing that Caleb is on the lower end of where he is supposed to be (and is likely to go lower), but this really is a result of his good growth. The best part is that when the next surgery is over and he has recovered, the load on his heart will be greatly reduced and he will not be nearly as fragile as he is now. We will not have to be as terrified that every cough or sniffle will send him to the hospital.

Sunday, December 5, 2010

Sunday, December 5, 2010


More smiles and the start of a double chin


Caleb's John Deere hat from Grandpa and Grandma Dougherty

The visiting nurse came on Tuesday to check Caleb out. He still has his cold, but she did not think that it had moved into his lungs. His oxygen saturation was 74% and he weighed 10 pounds. We are officially to double digits! As you can see, he is starting to fill out a little. He is still really long and skinny, but he is gaining.

On Wednesday, the therapist from Early On came to work with Caleb. We are trying to get him caught up to where he is supposed to be for his age. As you may guess, spending the first ten and a half weeks of your life in the hospital and sleeping a lot when you come home puts you a little behind schedule. She laid him on his tummy on the floor and he lifted his head about 45 degrees. He also moved his hands up to support himself. While this is not quite where he should be, it is some major progress. Our main areas to work on are his strength and gross motor skills as well as his feeding from a bottle. We are excited to get help with the feeding instead of just assuming he won't get it and waiting for a cup.

On Thursday, he had his pediatrician's appointment. The doctor was happy with his weight gain and also did not think that the cold had moved to his lungs. He got three different shots, so we are officially started with his immunizations.

Hopefully, he will get his RSV vaccine this week. The vaccine is so expensive that the company that supplies it checks to make sure that it is covered by insurance and double-checks with the parents so everyone knows how it will be paid (our insurance is covering it). The nurse practioner in Ann Arbor called it "liquid gold". I will just be happy when he has had the shot. A nurse will come to the house to give it to him, which means one less trip to the pediatrician's office and less exposure to sick kids.

Caleb's appointment with the cardiologist was moved up a week to tomorrow. I am glad because I am starting to get paranoid. Between his cold and not having had his heart checked out by the experts in a month, I get worried easily right now. Hopefully we will get a good report tomorrow and I can rest easy for a couple more weeks. I will try to post an update with results tomorrow night.

Friend Updates:
- Gabriela is home from a stay in the hospital with pneumonia.
- Colton's surgery went well and he is recovering in typical heart baby fashion - two steps forward, one step back.
- Ben's pre-surgery appointments are this Wednesday, with surgery scheduled for Thursday.

Thanks for all of your prayers for Caleb and for the rest of our family. We are so lucky to have people (some of whom we have never even met) praying for us!

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.

Friday, October 29, 2010

Friday, October 29, 2010


The boys ready to head out


In the elevator

Caleb had a good night last night. He mostly slept through his 1:00 a.m. feeding. This is a major benefit of the NG tube. He doesn't even have to wake up to eat.

At 3:00 a.m., he decided he was ready to eat again, one hour before schedule. Phil took this feeding and then we all slept until 7:30 a.m. We were much less nervous than I figured we would be. Because we were working on feeding and modifying medications the last week in the hospital, not working on his heart and lung stuff, I am much more comfortable with his level of stability.

We had a good day today. Caleb is high maintenance and really likes to be held (especially by me), but he was pretty well behaved. I am definitely going to have to find my baby carrier and I will probably end up with some very defined biceps.

Thursday, October 28, 2010

Thursday, October 28, 2010

WE ARE ALL HOME!!!

This is a Cliffs Notes version of today. I will fill in the gaps and add pictures tomorrow.

Caleb had a chest x-ray and it looked fine.

Caleb had his blood checked and his levels looked great.

Caleb had his circumcision today and I was grossed out. He had more bleeding than he should have, so we stayed longer so they could observe him. After a while, the bleeding slowed enough and we got to leave.

When we were nearly ready to walk out the door, Caleb blew out a diaper, got poop on his going home clothes and me. I bought a new outfit in the hospital gift shop and we hit the road.

We got home around 7:30 pm. It is now 11:00 pm and we have changed several diapers, given him 6 different medications, fed him twice (a major production) and found out he likes the baby swing.

Now we are going to bed to be ready for the 1:00 am feeding. We have still not adjusted to the fact that, if things go well, we will get to be in the same house tonight, tomorrow night, and for many nights to come. WOO HOO!!

Wednesday, October 27, 2010

Wednesday, October 27, 2010

Caleb had his final EKG today. They said that it didn't look normal, but it looked normal for Caleb. They are happy, so I am happy.

Caleb is scheduled for his circumcision tomorrow at 9:00 am. They will observe him for a while afterward to make sure he doesn't have any bleeding. They are more concerned with Caleb than normal healthy babies because he takes aspirin to keep his shunt from forming blood clots. They just want to make sure his thinner blood doesn't cause a problem.

Caleb's feedings are on track and the bottle feedings are progressing. He can now take about 18 mL before getting tired or too mad to continue. The speech therapist was happy with his progress and gave us the go ahead to try bottle feeding at each feeding if he tolerates it.

I set up several of his NG feedings and I gave him his medications tonight. I feel comfortable with that aspect of things now. I am actually not terribly nervous about bringing him home. I figured that I would be a nervous wreck. We'll see how I feel tomorrow.

As of right now, we are still on schedule for going home tomorrow. It will seem so weird to merge the two lives that we have been living for the past 10+ weeks. We will have four kids now, not three kids and one baby. It seems like I had Caleb years ago, but we are really bringing home a newborn. I had to go to Meijer's tonight because we don't have any diapers or wipes at home. We didn't have the guts to buy anything before, but now it is really going to happen (I hope!).

Tuesday, October 26, 2010

Tuesday, October 26, 2010

I got back to Ann Arbor around 9:00 am this morning. Caleb was not in his room so I checked in at the nurse's station. He was not scheduled to be gone, he was walking the floor with his nurse and the student nurse. Out on a date with older women!

When he got back, the nurse and nurse practioner went over today's agenda. His medications are now pretty stable, except they are trying to wean his Methadone. That seems to be working much better this time. I guess it is easier to be less fussy when you can breathe.

Today's feeding change was to go to three hour bolus feeding. They did the first three hour feed on the pump and the ones after that with the gravity method. The gravity method involves placing a syringe above him and letting the milk drain into his stomach through the NG tube. The higher the syringe, the faster the flow. He has tolerated all of the feeding changes very well.

Today was Mom Training Day. I took infant CPR this morning, learned how and when to give him his medications and feedings and learned to remove and insert an NG tube. I was kind of worried about the NG tube because you have to thread it through his nose and get it into his stomach. It is actually not that bad. Of course Caleb screams, but he screams when you change his diaper too. Caleb's scream sounds like the squeal a baby pig makes when you catch it by the leg. Needless to say, when Caleb is mad, everyone knows it.

Basically, all that is left is his car seat test and his circumcision. The car seat test consists of putting the baby in the car seat and monitoring his oxygen saturation, heart rate and breathing rate. There is a study going on at U of M to determine if heart babies are more likely to have problems riding in car seats because of airway and heart issues. Everyone participates in the study because it seems kind of stupid to spend all of the time and effort to repair the baby's heart and then have them stop breathing in the car seat. The circumcision thing seems like a really mean thing to do, but if we don't do it now, it will be a REALLY mean thing to do later.

Right now, the plan is to discharge Caleb on Thursday, not Friday. If everything goes well tomorrow, we should be on track. I, for one, would be just fine with going home one day earlier than expected!

Monday, October 25, 2010

Monday, October 25, 2010

Today was a big day for Caleb and everything that happened went great!

Caleb had his discharge echocardiogram today and everything looked just the way it was supposed to. The clot has shrunken dramatically, so they were able to stop the Heparin and just use the baby aspirin that all babies with shunts take. The last IV medication is gone!

Caleb also had a chest x-ray this morning and his lungs look very good. He is still doing fine breathing on his own and the diuretics are working correctly.

Caleb had his hearing test and passed that. Babies that are on the ventilator for more than two weeks are at an increased risk for hearing loss, so he will be tested more often to make sure there are no problems.

The speech therapist checked on him to see how he was doing taking a bottle. He sucked down 15 mL while she was there. His sucking is not perfect, but it works and she showed Phil some tricks to make it more efficient.

Caleb has been tolerating the 24 calorie breastmilk well, so they started to wean him off the continuous feeding. Because he has been fed continuously for so long, the first step is to give him the same amount of milk over a shorter period of time to give his stomach some time to grow. His goal feeding volume is 23 mL/hour, so today, they started him with 46 mL fed over a period of one hour and then turned off the pump for an hour. He has been doing that for 11 hours now and is still tolerating it well.

The nurse practioner told Phil that their goal was to discharge him on Friday. This is the first time we have ever been close enough to discuss a date. We were both ecstatic. I feel like we have a lot to do and learn in the next 3 days and if today was any indication, we do!

I am going to put a copy of the blog postings and the comments in Caleb's baby book. I would like to put a list of the people that have been following the blog in his baby book as well so he knows how many people were checking on him and praying for him. If you would like to be included in the list, please put your name in the comments section on the blog and include how you came to read the blog if you would like. The easiest way to comment is to click on the word "Comments" at the bottom of the post, scroll down to the "Post a Comment" section, write your name and how you came to read the blog (if you want), click on the arrow next to "Comment As" and select Anonymous, then click "Post Comment".

Sunday, October 24, 2010

Sunday, October 24, 2010


First Stroller Ride!

Caleb had another great day. He got to go for his first stroller ride today. Now, he is only hooked up to two pumps, so they loaded the pumps on board and walked around the 5th floor. Phil said that it was great.

Caleb is still doing great breathing all on his own. His oxygen saturation is around 80 to 85 percent and they want him between 70 and 80 percent. He seems to like being just outside the range the doctors want. I hope this isn't a sign of what he will be like when he is a teenager.

There was some kind of misunderstanding, so Caleb was not increased to 24 calorie breastmilk until around 6:00 pm tonight. I was frustrated when Phil told me this morning. You know how you can work for six months straight, but on the day before you go on vacation you feel like there is no way you could work another minute? If we had to stay in Ann Arbor for another three months, we could do it, but with the end in sight, a 24 hour delay seems like a major pain. At least we are on track now.

Today, they switched Caleb's last diuretic to the oral version. Tomorrow morning, we will see if that switch will hold.

Phil tried the bottle with Caleb again today. This morning, he was not successful and this evening, he was able to get him to drink part of the bottle, but he did not finish it. Caleb has been sleeping a lot, so finding a time when he is awake, happy and ready to try the bottle has been tricky.

Tomorrow, Caleb will have another echocardiogram to look at his heart and assess his blood clot. If the echo looks good, it will serve as his discharge echo. This would be the first step in the checklist to go home.

Our list of stuff we need to have done before we leave and our progress:
- Optimize his diuretic doses (In progress)
- Switch the last diuretic from IV to oral (Switched today, see results tomorrow)
- Optimize his blood pressure medicine (In progress)
- Switch to 24 calorie breastmilk (Switched today, see results tomorrow)
- Switch from continuous feeding to feeding once every three hours
- Determine what needs to be done to work around the blood clot (Tomorrow)

Saturday, October 23, 2010

Saturday, October 23, 2010

Because you can't jinx a baby heart, I can say that today was another great day!

Phil went to Ann Arbor first thing this morning and got to witness how great Caleb looks firsthand. He has been there for all of the monotonous times and has not yet got to experience serious forward progress. Today was his day. He said that he felt guilty telling me, but he is finding it exciting.

Caleb is still doing wonderful without the forced air. It has been over 36 hours now and he is showing no signs of increased breathing effort.

A room was available on the floor, so the boys moved out of the PCTU. The room he is in is a private room that they use for isolation when kids have some kind of contagious condition. It is a lot nicer than the standard room where two kids are jammed into a tiny space. They will get kicked out if someone needs the isolation room, but for now, they are staying in style. Because Caleb has been there so long, we have made friends with a lot of the parents and nurses, so the boys have been entertaining lots of visitors in their new pad.

Caleb seems to be tolerating the increased calorie breastmilk. They are going to increase from 22 calorie to 24 calorie milk tonight. As I have mentioned before, they fortify the breastmilk with formula to make it richer. Heart babies normally have a difficult time gaining weight because they are working so hard maintaining normal body functions.

Phil worked on Caleb's feeding homework this morning. Caleb can try a 5 cc bottle twice a day to work on his feeding skills. Caleb sucked on the nipple, gagged and then went back and finished the bottle. The fact that he can suck, swallow and breathe is absolutely huge. I was ecstatic!

The following are the things that we still need to do before Caleb can come home:
- Optimize his diuretic doses
- Switch the last diuretic from IV to oral
- Optimize his blood pressure medicine
- Switch to 24 calorie breastmilk
- Switch from continuous feeding to feeding once every three hours
- Determine what needs to be done to work around the blood clot

Phil asked the nurse practioner what kind of time frame we are looking at for coming home. She said that if things go well, we should be in Ann Arbor for another week or so. We are figuring on two weeks to hopefully avoid disappointment. We are just excited to be considering going home!

Friday, October 22, 2010

Friday, October 22, 2010



Can you spot what is different today? If you answered "Caleb is missing a nasal cannula", you win. This morning, Caleb's chest x-ray looked great and they decided to drop his volume to 1 liter at 5:00 am. At 9:00 am, they came in and unhooked him all together. He looks so different without the cannula!

Caleb is tolerating the change to oral diuretics very well. Today, they changed his second diuretic to a different drug that is easier to get and administer when we get home. This drug is more common, but did not work for Caleb in the early days. We are going to see if it will work now.

We met with the speech therapist to see if we can get Caleb to take a bottle. Right now, we are just getting him accustomed to it. He has not had anything by mouth since he was two days old. He takes a pacifier fine, but when he tried the bottle, he gagged when the milk came out of the nipple. This weekend, we get to try to get him acquainted with the taste and feel of bottle feeding. I have always been worried about him not being able to bottle feed or breast feed, but after being through this process, I am not worried. I have no problem using the feeding tube if we have to so we can bring him home.

We did not move out of the PCTU today either. They decided that he was doing too well for Moderate Care, so they are going to move him straight to the floor. Today, beds were available in Moderate Care, but not on the floor. This is not at all disappointing, because right now he has a great room and shares a nurse with a great roommate.

Today was another great day! All of the nurses and doctors cannot believe the change that has resulted from the surgery.

Thursday, October 21, 2010

Thursday, October 22, 2010

Today was another great day!

Caleb was mean to the night nurse last night. He did not have any medical problems, but he was fussy. The nurse gave him some pain medication, but he still fussed. She said that if she stayed right by him and kept his pacifier in, he was fine. This all sounds very familiar. My theory is that he is starting to feel better and is back to his old tricks.

He did have some fluid on his left lung, but they are just going to beat on him. They are not very concerned about it and his numbers are still looking great.

We are still in the PCTU because there were no beds in Moderate Care. They even mentioned going to the floor, but said that with his history, they want him to go to Moderate Care. He doesn't belong in the PCTU anymore. Caleb has a cry that will take paint off your walls and they aren't used to babies that cry at all in here!

Major Milestones Today:
- Chest tube out
- Arterial line out
- Weaned to air from the wall - 2 liters with no oxygen
- Morphine cut in half
- One set of diuretics switched to oral
- Started oral blood pressure medicine
- Nurse practioner said the word "discharge"
- I can hold him again

I had a nice talk with the nurse practioner about what we should and shouldn't do when we take Caleb home. She said that a "You can look but don't touch" attitude would work. We can go places as long as there is not a lot of sickness around and everyone needs to wash hands before touching him. He will need RSV shots and the rest of us will need flu shots. I think that this is very feasible. I think it was funny that she mentioned that he is our baby and we are going to want to show him off. I love these people! They remember that Caleb is a real baby and part of a real family.

Update on Emilio and Gabriela - Both babies made it through the night, but could still use some extra prayers.

Wednesday, October 20, 2010

Wednesday, October 20, 2010

Today was another good day. Caleb had a little meltdown last night where he was dropping his oxygen saturation levels. They increased his high flow to 40% oxygen and his volume to 7 liters. By the time I got to the hospital, he was down to 25% oxygen. Other than giving the nurse fits and doing more things that can't be explained, he didn't have a bad night.

This morning, Caleb's chest x-ray looked good and his feeding was going smoothly. His blood levels were getting a little low, so he was given another transfusion. The low levels are probably a result of the surgery and the large number of blood draws that he is getting for miscellaneous testing, so no one is worried. After the blood transfusion, his oxygen saturations stayed up where they wanted them.

His feeding is progressing smoothly and he has been taken off the blood pressure medicine. He was getting a little dry, so they changed his diuretics back to twice a day instead of three times. By the time I left tonight, he was weaned down to high flow room air at three liters.

Tomorrow should be a big day. At 4:00 am, they will stop feeding him so they can take his chest tube out. If everything goes well tonight and tomorrow morning, they will take out his chest tube and his arterial line. With this done, I should be able to hold him again. We may also be headed out of the PCTU and back to Moderate Care tomorrow.

The doctors and nurse practioners are very happy with how he is progressing. We are all reminding ourselves that Caleb is a new baby now and some of the problems that we experienced before may be completely gone as his body has adjusted to the new shunt size. What a lovely thing to keep reminding yourself!

I would like to ask a favor of anyone that is reading this blog. As you may guess, when you are here, you meet lots of other babies and parents in the same situation and you bond very quickly with them. When your baby is having a tough time, it is wonderful to hear that someone else's baby is having a good day. Now Caleb is having the good days and some of our other friends are having a very tough time. If you are willing, please pray for Gabriela and Emilio. Both babies are in very critical condition and can use all of the prayers that can be sent their way. Thanks!

Tuesday, October 19, 2010

Tuesday, October 19, 2010


Good - This morning


Better - This afternoon


Great - This evening












On a scale of 1 to 10, today was an 11!

To let you know this really is about Caleb and not some stand-in superstar baby, I will explain his effort last night to make me totally gray. Last night, I went back to the hospital after finishing the blog post. I called to see if I could go back to see him and the receptionist hesitated and was gone for a while checking with Caleb's nurse. She said I could go back and when I got there, Caleb was on the transporting monitor and packed up to head out somewhere. His pupils were different sizes and were sluggish. They also noticed the left side of his body was not moving much. They were worried that he might have bleeding in his brain, so they quickly got him in to do a CT scan of his head. After about an hour, they came back with some ambiguous results that did not indicate there was a problem. By the time he came back, he was moving his left side and by this afternoon, his pupils were working like they were supposed to. They think he just had a reaction to the anaesthesia.

Great Thing #1 - Caleb is off the ventilator
They sprinted (the test to see if he was ready to come off the ventilator) Caleb twice in the night last night. He passed the first sprint and failed the second. When Caleb is on morphine, sometimes he gets a little too calm and forgets to breathe. This morning, they cut his morphine in half and he was awake a lot more. He passed two sprints this afternoon and was taken off the ventilator at 5:00 pm. When I left at 8:30 tonight, he was still doing great.

Great Thing #2 - Caleb's surgery looks like a success
The surgeon told me this morning that they are very happy with the results of the surgery. His oxygen saturations are down where they want them and his other numbers look good. His chest tube is barely draining and may be able to come out tomorrow.

Great Thing #3 - Caleb had a good looking echocardiogram today
Caleb had an echocardiogram today and his heart looks good. His function is good and his mitral valve (the valve on the left side, his good side) is working properly with no leaks. He does have a blood clot where his PICC line was, but they are just going to watch it and give him his aspirin.

Great Thing #4 - Caleb is making great overall progress
Today, they removed Caleb's foley catheter so he is peeing in a diaper now. He started peeing on his own, so he is not entirely dependent on diuretics. He did need to start diuretics this morning because his lungs were wet (not unexpected) but the diuretics are working and his lungs sound better.

Caleb's PICC line was not working properly, so they removed it. They are going to wait to replace it because the line they placed for the surgery yesterday should last for a while and they don't necessarily feel that we will need something long term anymore.

Based on today's progress, we are cautiously optimistic. We know that there will be some setbacks, but hopefully we have started in the right direction. Being here, you walk a fine line between being optimistic and being superstitious. There is a lot of knocking on wood and "So far, so good". Most everyone here has a "glass half full" mentality, but we are always worried someone will tip over our glass when we least expect it. I will officially call today a great day and not be worried that I will put a jinx on tomorrow!

Monday, October 18, 2010

Monday, October 18, 2010



Caleb's surgery went well with no complications! He was in and out in a timely manner and they were able to close his chest (two major accomplishments for Caleb).

The surgeon ended up putting a few clips on his shunt to narrow it up. They would put a clip on and watch the monitors to see what it did to his oxygen saturation levels. They kept adding clips until the levels got where they wanted them. The surgeon said that everything went well.

Now we wait and watch. They will be watching his oxygen saturations, his chest x-rays, his blood pressure, etc. to see how everything responds to the new size. If they think it is too large or small, they will probably just open his chest back up at his bedside and make the necessary changes. So far, things look good.

They are talking about trying to get him off the ventilator tomorrow. That would be beyond huge for us because we can't hold him until he is breathing on his own. Because Caleb's two favorite things are being held by Mom and Dad and eating, we are going to have a very crabby little guy if it takes too long to get off the ventilator and back on milk.

This week might be very exciting for us. We should get an idea if "Goldilocks" likes his new shunt size. We've had too small and too big, now it is time for "just right". It will also be very interesting to see how long it takes us to get out of the PCTU. It is nice to see the People of the PCTU again, but I would rather just visit.

Caleb reached another milestone today. They increased his dry weight from 3.55 kg to 3.65 kg. This is the what they consider his actual weight, without the effects of his fluids. This is an important number because this is the weight they use to determine if he is retaining fluid and the weight they will try to keep him at as they work out his diuretics.

We realized that, as we expected, it is much harder to send your baby off to surgery when you have had nine weeks to get to know him, hold him and cuddle him. It was tough the first three times, but it was harder today. Luckily, it is a little easier when you know that the surgery might finally get us to a place where we can take him home.

Thank you for all of your prayers today. I was very anxious about this surgery (how many times can you open up a baby's chest without causing major problems) and knowing that people were praying for Caleb was so comforting!

Sunday, October 17, 2010

Sunday, October 17, 2010

Caleb is two months old today.

His surgery is scheduled for sometime between 10:00 am and 1:00 pm tomorrow. The surgeon's representative said 1:00 pm, the nurse said that it may be closer to 10:00 am. We'll see who is closer tomorrow.

Caleb had another uneventful day today. The only hiccup was that Phil thought he might have seen a speck of blood in Caleb's diaper this afternoon. He told the nurse and she talked to the nurse practioner. They will keep an eye out, but no one seems overly concerned. I really hope that there is nothing to delay the surgery.

Tonight I realized that we have made no real progress since Caleb left the PCTU over five weeks ago. He has still not gained any weight, he is still on high flow air and a large amount of IV diuretics. The only change is that he has gotten stronger (I don't know how he has done that). We are fervently hoping and praying that the smaller shunt will solve our problems and get us over this hump.

I will try to post more often tomorrow with updates if possible. Thank you for all of your prayers. We definitely feel your love and support.

Saturday, October 16, 2010

Saturday, October 16, 2010

Caleb is still boring and we couldn't be happier. He lost a little weight today, which stinks, but helps convince us that the having surgery is better than waiting with no growth. He is working so hard to maintain that he has nothing left to add any weight.

Caleb's blood is still low on potassium. Low potassium levels can cause problems with heart rhythms. Luckily, they can give him IV and oral potassium to bring his levels back to normal. Right now, they are not very concerned. He is peeing out the potassium because of his diuretics and his kidneys are not showing any signs of damage at this point.

Today, they gave Caleb another blood transfusion. His hematocrit level was slightly low and because he is having surgery on Monday, they decided to juice him up a bit. Did you know that a form of doping is to use blood transfusions? He may not be capable of being a professional athlete when he grows up, but he can act like one!

Friday, October 15, 2010

Friday, October 15, 2010

We told Caleb that we wanted "Boring" until Monday and he is holding up his end of the bargain. His numbers are holding steady and he has been mostly friendly to the nurses and has not been fussy for me. His weight was the same as yesterday. He is sleeping a lot - hopefully resting up for a strong showing on Monday.

I came home early tonight to take the Big Three to the corn maze, an annual tradition for us. They are starting to feel more strained as things keep dragging on, so we have been trying to make it a point to do a family thing with both Phil and I home each week. Hopefully, next week we can start making real forward progress and we will all start to feel that a homecoming may be in sight.

Thursday, October 14, 2010

Thursday, October 14, 2010

Just when I was worrying about another surgery for Caleb, I was sent another Guardian Angel to set me at ease. I moved into the Ronald McDonald house this week. While I was eating supper at the house tonight, I saw a woman walking around with a six month old baby. Most of the people in here have babies in the hospital and the healthy baby in the carrier did not make sense. After talking to her, I found out that her baby has Hypoplastic Left Heart Syndrome and is going in for his second surgery tomorrow. When you see a smiling, happy, chubby baby that survived some very rough times (he was in the hospital for 6 weeks and had to be on the heart/lung bypass machine for 46 hours), you feel much better. Things got even better when she said that one of the people she met when her baby had his first surgery needed to resize a shunt. I feel so much better knowing that it can be done!

Caleb had a very lazy day today. He is sleeping a lot because he is in his happy place (he may have actually gained weight, we'll see tomorrow) and the big shunt is wearing him out. He is also very sweaty now. I talked to the nurse practioner and she said that the sweatiness and sleepiness are both signs that the shunt is too big. I hope Caleb doesn't find out that he is actually giving us real information now.

I asked to give him a bath today. He doesn't smell the best from all the sweating and I miss doing some of the Mom Stuff. It wore him out and he slept all morning. I was able to get some work done while he was sleeping.

Hopefully, the next couple of days will be just as boring. We don't want any more excitement until Monday.

Weight Yesterday: 3.575 kg
Weight Today: 3.685 kg
Change: 110 grams

Wednesday, October 13, 2010

Wednesday, October 13, 2010

Today was a whirlwind of changes. When I got to the hospital, we were still waiting on the results of Caleb's chest x-ray. By the end of the day, I had found out that it looked better than yesterday. The increased diuretics seem to be working, but of course that means Caleb's weight is back down. Now we are 25 grams above his birth weight. Twenty five grams over 8 weeks is not a great accomplishment and is not putting us on the road to grow into the shunt.

I talked to the nurse practioner about the mixed messages I have been getting from the nurse practioners, surgeons and cardiologists. She said that there has been a large amount of discussion about what to do with Caleb. We seem to be stuck, with no steps backward, but no real steps forward, and everyone seems to have an opinion about what is going on. Opinions abound and real evidence is hard to find.

As soon as we got done talking, the cardiologist told the nurse practioner that Caleb was going to have surgery on Monday to downsize his shunt. We have been told previously that this was not a possibility that anyone was seriously considering. They were worried that he would still not like a smaller shunt and we would be performing dangerous surgery for nothing.

When I talked to the cardiologist, the overall feel I got was that we had to do something and hope that this worked. I called Phil to make sure he can be here Monday and we made plans to make sure the Big Three got here this weekend in case things go bad on Monday. I was in tears, but Caleb was still fussy so I couldn't go to the Chapel for my obligatory breakdown.

About forty five minutes later, the surgeon came in to talk to me. He came in with a big smile on his face and asked me why I was all teared up when we were looking at good news. He explained the situation in more detail and things are much better than they sounded earlier. As you may remember, when Caleb had his heart catheterization last week, the pressures in his lungs were too high and this is a problem for the other surgeries in the normal plan. In the past three days, his oxygen saturation levels have hung out between 80 and 90 percent. This is higher than what they have been (and higher than they want them to be). The surgeon feels that this is an indication that the pressures in the lungs have decreased on their own, eliminating the need for the Viagra and giving us a situation where downsizing the shunt may provide real results. While Caleb will have to have his chest opened, will need to be intubated and put on the ventilator again, he should not have to go on heart/lung bypass. The plan is to put a little clip on the shunt to reduce the diameter and choke it down a little. The surgery should take about three hours and should not involve messing around with his heart, just the shunt.

If this works, it should reduce the blood flow to his lungs. This should keep his lungs from flooding and allow us to come off the high flow air. The reduced blood flow to his lungs will result in increased blood flow to the rest of his body. This means more blood for his intestines (less chance of shutting down again) and his heart (less likely to have a heart attack).

While I am not excited about more surgery and the potential complications (terrified is more like it), I am excited that maybe this will be the fix we need to move forward. I am also happy that Caleb has started to show us more of what he needs, instead of just telling what he doesn't want. Please pray that this is the change we need and that this will do the trick.

Tuesday, October 12, 2010

Tuesday, October 12, 2010



Caleb is 8 weeks old today. Strange thought for today - he has never been outside.

They did not start the Viagra today. His lungs were quite wet, so they increased the frequency of his diuretics. He will have another chest x-ray tomorrow and if that looks good, they might start tomorrow. If they don't start the Viagra, they will try 24 calorie breast milk, so at least he should be getting enough calories to grow. That should be 2112 additional calories per day - a pretty substantial amount when you only weigh 8 pounds.

Caleb was very happy and content today. You can tell how fussy your baby is when all of the nurses comment on how happy he is when he is not screaming! Caleb has a very high pitched cry that sounds like a squeaky toy. Other parents can recognize his cry. Luckily, we don't hear it all the time now.

I held Caleb for a long time and we talked. He likes to look around now and will turn toward sounds. I think I might have even seen a real smile. It made me cry happy tears, whatever it was.

Today's Weight: 3.64 kg
Yesterday's Weight: 3.615 kg
Change: +25 grams

Monday, October 11, 2010

Monday, October 11, 2010

Phil covered the eastern front again today. Caleb was fussy, but did not need any morphine. He has not had any since last Thursday. They think that he might be having issues with gas.

They decided not to start Caleb's Viagra today. We were supposed to start last Friday, but it keeps getting pushed back. Today, we found out that the reason is the cardiologists have been keeping an eye on Caleb's heart rhythm. Some of the cardiologists are worried that he might not be getting enough blood supply to his heart and some are not worried. We will see if we actually start tomorrow.

Today, they did decide to supplement his breast milk to 22 calories per mL from the usual 20 calories per mL. Now we will get to see if he starts putting on weight.

Today's Weight: 3.615 kg
Yesterday's Weight: 3.59 kg
Change: +25 grams

Sunday, October 10, 2010

Sunday, October 10, 2010

Today was a good day. Phil went back to Ann Arbor first thing this morning and made it back in time for rounds. Caleb has been increased to 22 mL/hr of breast milk. It sounds like they might not be adding the supplement any time soon, so I think that they increased his volume to give him some more calories. Phil's understanding was that they didn't want to make the breast milk too concentrated so it would be difficult for Caleb to digest. He will stay on the continuous feed pump because it is easier for his body to digest at a constant rate instead of dealing with a large quantity at one time like a normal baby does.

Caleb was also less fussy last night. We think that he is enjoying having something in his belly again - several nurses have commented to that effect as well. At least we know he is in the right family, he is much happier when eating (especially continuously).

Yesterday, I was really worried about Caleb's fussiness and the resulting drugs. When I had Ella, the pediatrician said that if the baby fusses for Dad, Dad should take Mom's robe, throw it over his shoulder and let the baby smell Mom. Yesterday morning, I left the t-shirt that I used for pajamas the night before at the hospital. When Phil got there this morning, the t-shirt was in Caleb's bed, up by his face. I have talked to several people that used this for puppies. It seems to work for Caleb too.

Hopefully, Caleb can start to gain some weight now that he is on full feeds and not wasting all of his calories throwing fits. We lost some ground last week when he had his big bleed (we call it his fountain impression) that we have not regained. We will see what this week brings - smelly t-shirts and all!

Yesterday's Weight: 3.58 kg
Today's Weight: 3.59 kg
Change: +10 grams

Note: A penny minted after 1982 weighs 2.5 grams.

Saturday, October 9, 2010

Saturday, October 9, 2010

Phil and I would like to thank our family and friends for the wonderful dinner this evening. A benefit was held for our family to help with our expenses. If you are not familiar with Alto, Michigan, a little background is in order. Alto is a small community where nearly everyone is a friend and/or member of our family. Tonight, we were surrounded by people that have been praying for and supporting our family forever, but especially since we found out about Caleb's heart condition. When I was a teenager, I was never able to figure out why my friends wanted to move away. I always planned on living where I grew up and giving my children the wonderful sense of community that I had. Once again, our community proved my instincts were correct and our children could not be any luckier than to be surrounded by people that love, support and protect them. Thank you to everyone that helped with the dinner and all those that attended. We had a wonderful time and it was great for me to be back where I belong.

Caleb had a good day as well. He is up to his goal volume of 20 mL/hr and seems to be tolerating it very well. He also did a good job being pleasant to the nurses while I was gone. He was fussy for me this morning, so I guess I tired him out. I left around 1:00 pm to head home and he slept most of the rest of the day. A good day in Alto and a good day in Ann Arbor, what more could we ask for?

Friday, October 8, 2010

Thursday & Friday, October 7 & 8

I did not post last night because I was busy juggling. I went home yesterday afternoon and Phil and I took the Big Three to ArtPrize. We had a great time and enjoyed being a family in our native habitat. When we got home, I had to work on a project that I needed to have done for work today.

Caleb is still advancing on his feeding. Now he is up to 14 mL/hr with a goal of 20 mL/hr. He seems to be tolerating it very well. He has spit up a couple of times, but nothing that is a big concern. Hopefully, we will get up to full volume tomorrow. Then we will start adding back the formula.

They were going to start his Viagra today, but decided to wait until Sunday or Monday. Once again, they don't want to push Caleb too hard or make too many changes at one time because then we can't pinpoint the cause if there is a problem. I am trying very hard not to get frustrated with our progress. I keep telling myself that the longer it takes, the older he will be and hopefully, we will are more likely to be successful. He has not gained any weight since his big bleeding episode on Monday night, so that is frustrating too. Maybe tomorrow.

Caleb got two doses of morphine in the last 24 hours. This concerns me. As I have mentioned before, this doesn't happen when I am here. I leave early on Thursday and get back later on Friday and he needs two doses. I talked to the nurse practioner about my concerns. I understand that he is spoiled when he can be held for as long as he wants during the day when he is fussy, but I don't know how to fix it. It doesn't seem like a good idea to give him morphine every time he gets inconsolable, but I also understand that he can't be held each time he is fussy at night and he can't just cry it out like a normal baby. If he were home, we would put him in a swing, snuggle him, or carry him around in a carrier. We don't have that luxury here, so hopefully we can find some solution that doesn't involve drugging him constantly.

As I re-read this post, it sounds like I may be getting frustrated and tired. While this is true, I am seeing progress and am still enjoying the time I get with Caleb each day. Hopefully, our progress will continue and soon we can start to see the light at the end of the tunnel.

Wednesday, October 6, 2010

Wednesday, October 6, 2010

Today, I talked with the surgeon and two of the nurse practioners to get the scoop on the heart catheterization and the game plan.

As I mentioned yesterday, the pressures in Caleb's lungs were too high. We do not know why. Normally, they start out high in newborns and decrease with time. We don't know if his are high because there are problems with his lungs, if they are high because of the shunt or maybe they are high because his body has never been stable long enough for them to go down. While this is not an unheard of problem, it needs to be fixed before he can have the next surgery.

There were no other reported problems with his heart like leaky valves, weak squeeze, etc. That is good news.

After the catheterization, everyone thinks that the shunt is too big. Now, our job is to get Caleb to grow so he will need more blood going to his lungs. He grows and the shunt doesn't, so at some point, it should be the right size and then start to get too small. When it starts to get too small, they will perform another catheterization and if the pressures have dropped, they will perform the next surgery.

The game plan now is as follows (in order):

1) Start feeding him breast milk at a rate of 3 mL/hour and increase to 20 mL/hour over the course of a few days. His current source of nutrition (TPN and lipids) will be reduced as the breast milk is increased, but he will still receive enough nutrition for real growth. If he tolerates this, they will add formula to fortify the breast milk again. This process was started this morning. Caleb is being fed directly to his stomach. Unfortunately, 3 mL/hour does not eliminate his growling belly, but when the volume is increased, he should have a feeling of being full. Hopefully, this will greatly reduce his present fussiness.

2) Start the new medication to try to reduce the pulmonary pressure. The medicine they use is Viagra. It makes the blood flow better through your lungs as well as to other places. They are hoping to start this on Friday. The dosing will be increased slowly to make sure it does not "cause a sudden drop in blood pressure" as the commercials warn.

3) Switch back to oral diuretics and blood pressure medicine. This will not start until the first two items are all set.

4) Wean off the high flow air.

5) Go home and grow until the shunt becomes too small.

They expect the first four steps to take at least a month. Hopefully, we can keep him growing the entire time and when it comes time to wean off the high flow air, his additional size and strength will allow him to be successful.

In the last week, we have seen real growth and an increase in strength. Caleb has grown in length. I am not sure how much, but it is becoming noticeable. Because his weight has not kept up with his length, he is very thin and looks like a worm.

He is also getting stronger. He turns his head side to side, kicks his legs and grabs anything he can catch, requiring you to pry his fingers away. He has bounced back from a pretty substantial blood loss in a really short time. The nurse practioner was impressed by how good he looked this morning.

Now that we have a game plan and have already started, it is much easier to face the days ahead. It is not really even that frustrating that we had already completed Steps 1 and 3 before we had our big backslide. Hopefully, the two weeks that have passed since the backslide and the three weeks ahead before we try weaning off the high flow will give him the strength he needs to finally get over the hump.

Tuesday, October 5, 2010

Tuesday, October 5, 2010


The Bookends

Caleb is 7 weeks old today.

Caleb did not have any more bleeding, but he did get more blood this morning because his levels were low. With that, he needed extra diuretics to help take away the extra fluid we are pushing into him. He spent most of the day trying to get back to where he was yesterday. Things are looking better now.

He was fussy today. We think that he might be tired of his empty belly. He sucks on his pacifier like there is no tomorrow and he goes crazy when bare flesh passes too close to his mouth. I even saw him trying to suck on his fist. I'm pretty sure that he still knows how to eat.

We got a very preliminary report from yesterday's catheterization. The pressures in his pulmonary artery are too high and he will need another catheterization before his next surgery. The pressures will have to decrease before they will be able to do the surgery. As for what this means for our game plan and time frame, we do not know. We should learn more tomorrow. For now, he is sleeping peacefully and his numbers look much better. We will take what we can get.

Monday, October 4, 2010

Monday, October 4, 2010


The Boys

Because Caleb was not scheduled for his heart catheterization today, I went to the office to pay some bills and print off some stuff I needed for the projects I am working on. I tried not to feel guilty by telling myself that by spending some extra time away this morning, I would be able to spend the rest of the week with him. We are lucky that I can do some work at his bedside and do not have to leave him right now to go back to work.

As I was on my way back to Ann Arbor, I got a phone call from the hospital saying that they were going to do the heart catheterization today, as soon as it was possible. I gave them my consent over the phone and picked up speed, hoping to make it to the hospital in time to hold him and tell him we love him before the procedure. After all the twists and turns we have experienced, we never assume that things will turn out as expected.

I made it to his room with about ten minutes to spare. I got to hold him for a few minutes and take care of the necessary business. I was very relieved that I had made it.

After Caleb went off to the cath lab, I got caught up on what happened since last night's report. He did not need any morphine. He was fussy, but with a pacifier and a volunteer holding him, he made it through. That is the tricky part about a fussy baby with a heart condition. Some of the time, holding him will solve the problem. However, when the nurses have more than one baby to tend to, they can't hold your baby all of the time. Caleb's heart rate increases and his blood oxygen levels decrease when he gets too agitated, so they give him morphine to calm him. We can't stay at the hospital all the time (especially if we are looking at two more months of this), because there is no place for us to sleep. Hopefully, someone can convince him that if he would get well enough to go home, he could have all of the holding he wants with no drug intervention.

The preliminary information from the catheterization is that the shunt is too big. This is in line with what the nurse practioner and the two cardiologists that have followed him in Moderate Care think. Tomorrow, the surgeon will start reviewing everything and pow-wow with everyone to determine our plan of action.

As I was getting ready to write this blog back at the hotel, I got a call from the hospital. After I left, Caleb began bleeding from the artery where the catheterization was performed. Luckily, the nurse caught it, but he had lost a decent amount of blood. They gave him blood, albumen and saline to bring his blood volume back up. His oxygen saturations are good now and his blood pressure is rising back to where it should be. This is one of the risks that they mention is possible but doesn't happen very often. The fact that he had this complication is the reason that I felt the desperate need to get back to hold him before the procedure. It seems that Caleb rarely misses an opportunity to scare us.

Sunday, October 3, 2010

Sunday, October 3, 2010


The August Babies

Caleb had another good day. There were no major meltdowns and he gained 30 to 40 grams again. They increased his methadone to the level it was before the meltdowns became more frequent. So far, it seems to be working.

His heart catheterization will not be done until Tuesday or Wednesday. Last night, Caleb had a meltdown that last about 2 1/2 hours. They gave him some morphine and he calmed down quickly. When they took his vitals, he had a temperature of around 101. The thinking is that he may have been hot from his marathon fit. They ran tests on his blood and urine and everything looked good this morning. Waiting is not a major disappointment, it doesn't look like we will be going anywhere antyime soon.

Saturday, October 2, 2010

Saturday, October 2, 2010


First Family Picture

Today was a milestone day. Today we took our first family picture. Yesterday was the first time since Caleb has been born that our entire family was in the same room. As you can see, the excitement of the moment was not lost on Caleb!

This is what Caleb looks like when they try to wean his methadone dose. We believe that we officially have an issue. Both Phil and I asked the nurse practioner if this meant that he was addicted to methadone. She very quickly corrected "addicted" to "dependent". Addicted has a choice component, dependent is purely physiological. Addicted is difficult to fix, dependent just takes time and expertise. Luckily, we have both! What they will probably do is switch him to a different drug to calm him, thus soothing his body, but eliminating the methadone. They will probably wait a little while because the methadone is not hurting him and other than the occasional inconsolable meltdown that should be eliminated by putting him back at his happy dose, he is getting very close to his happy place.

Today, he gained 40 ounces. Another great day! The kids all got to hold him. It is really funny how much they enjoy it. The nurse we had last night was so impressed - she works nights and doesn't usually get to see siblings visit. She said "This is better than any drug we could give him". I doubt Caleb would agree right now, but he does seem to like looking at the Big Three when they hold him.

Friday, October 1, 2010

Friday, October 1, 2010

Caleb had a good night last night. He was fussy at 1:00 am and got a dose of morphine (he loves the hard drugs) and was good the rest of the night. He dealt very well with the wean from 4 liters to 3 liters of air. Today, they weaned his methadone a little. He is on a very small dose, but he still seems to need it.

Today, we officially declared that he gained weight. His diuretics are good and solid and he was 30 grams heavier today. In case you were wondering, 30 grams is the weight of about 10 pennies. Another gain like this and he will be back to his birth weight. Talk about slow progress! We will take progress in whatever form it comes.

It was decided not to wean the diuretic dose. His outputs are good and he is looking very good. When he retains too much fluid, he looks puffy and when he gets rid of too much, he looks like a raisin.

For now, we are going to hold steady on everything until the heart catheterization (hopefully on Monday, but we haven't heard for sure). So, we will hope for a couple more days of weight gains in the 30 to 50 gram range.

Thursday, September 30, 2010

Thursday, September 30, 2010

Today was another good day. When I got to the hospital this morning, Caleb's heart rate was 115. I had to ask the nurse if this was ok, this was the lowest I had ever seen it. They said that it was very good. We are moving closer to the "happy place".

We are still working on the night/day switch. I wake him up a few times a day to remind him he is not nocturnal. We hung out for quite a while and he was alert and not crabby.

They weaned his air from 4 liters to 3 liters. They were going to eliminate one dose of diuretic, but decided against it because no one likes to make more than one change to him a day.

We are tentatively planning on a heart catheterization on Monday. They are hoping that this can also serve as the heart catheterization he will require before his second surgery. Every hypoplastic baby needs a heart catheterization before the second surgery. Luckily, he had dinked around long enough that we are close enough to the next surgery to make it work. If everything looks good, that means one less major procedure. We will keep our fingers crossed.

Wednesday, September 29, 2010

Wednesday, September 29, 2010


Long and skinny with a chest full of scars

Today was a good day. Caleb's x-rays looked good this morning and everyone believes his intestines are fine. They will probably not x-ray them again unless something else shows up.

The nurse was going to give Caleb his bath this morning and asked if I wanted to help. Of course I was not going to pass up the opportunity to see my perfect little boy naked (you never really get to see the entire baby here, just pieces and parts) and do a regular mom job.

Before his bath, his NG tube was removed to give his nose a break. The tube was no longer needed because they didn't need to remove all the contents of his stomach. This was a good thing because the tape holding the tube on his face was irritating his skin. Tape irritation seems to be a common thing with Caleb.

I got to remove the leads on his chest and his oxygen saturation sensor, so when he had his bath, he only had his nasal cannula and the IV lines in his legs. After his bath, I got to hold a clean, fresh smelling little boy with only a few lines. It was absolutely wonderful!

After all the excitement of his bath, Caleb and I snuggled and he fell asleep. It seems that Caleb has his days and nights kind of mixed up. He is very fussy for the nurses at night, but is pretty calm (usually asleep) for me during the days. Today I made an effort to keep him awake so we can see if he is just spoiled by his mom or if something is wrong at night. This afternoon, he was awake, calm and alert for about two hours straight. We talked and hung out. Hopefully, we got him tired enough to sleep tonight, but not so tired that he had to work too hard. Like everything else with Caleb, sleeping and being awake is a balancing act.

Being in Moderate Care is an eye-opening experience. In the PCTU, nearly all of the kids had a heart defect where surgery was necessary, but would provide a decent quality of life after recovery. In Moderate Care, you see a lot of kids with serious defects that surgery cannot fix. I have met parents that had to decide if open heart surgery would improve the quality of life for a child that was not expected to live into her teens. We are in the fortunate position that if the surgeries go well, Caleb can live a good quality life. The obstacles that we are facing are much easier than what other people here are dealing with. While we still have a way to go, we are counting our blessings and very thankful for our wonderful family!