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


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.