A Plan

The good news is, the doctors have come up with a plan for Henry. Unfortunately, it means he will not get to go home before his next surgery.

On Thursday, I was able to have some good conversations with our PACT nurse and with the PICU attending doctor. The doctors had begun talking about sending us back up to the floor next week, but I still had a nagging feeling. My underlying question was: if his echos, vitals, labs, and even weight are all not substantially different from where they were when we came back down three weeks ago, why? Why did we come down, and why are we OK to go back up?

Since his cath on Wednesday, several members of the team have been talking, with us and with each other, about what Henry's options are. Ultimately, for him to have the Glenn procedure, his body needs to grow bigger and older. The doctors poured over all of Henry's info from, well, his whole life. They feel like there are two things we can do to give him the best chance. First, we are going back on milrinone. His echos and weight gain were moderately better while he was on the milrinone than on the enalapril and digoxin. This means we are hooking back up the IV. Secondly, we are only going to feed him by mouth every other feeding. The other half of his feeds will be completely through his NG tube. This should help him conserve some energy and use that it grow.

Because the milrinone is an IV medication, that will keep him from going home. Once the doctors feel they have found the best level for this, and aren't having to adjust it up or down, then we will at least be able to move up to the floor, and hopefully remain up there until his next surgery. It is far too early to know when that surgery will happen, but if he grows well under this plan, we can look to do it as early as possible. The surgeons will not typically do the second procedure until four months of age, and we hope Henry will not have any urgent complications that would necessitate the surgery before four months. If all goes well, he might get the next surgery in early May.

This is certainly not what we were hoping to hear, but it is what Henry needs. He is otherwise doing well. He is comfortable, not in any pain or distress. He is curious, looking around at all the lights - when he is awake. He seems to have his days and nights a little mixed up right now, but that might be his father's fault as much as the hospital's. We are grateful that he is not having any major issues that would require more invasive treatments and we are appreciative of the kind and helpful nurses and doctors. And thank you, for thinking of our little family.

Holding Course

Sorry for the late update. Henry is doing well. His heart cath went very well this morning and the doctors decided he does not need any intervention at this point. They saw and were able to measure what they were expecting to find, and nothing stood out as critical. There is some slight narrowing in his neoaorta, but the blood flow is much better than indicated in his echos. They also saw his mild tricuspid valve regurgitation, but it is nothing worth messing with for a long time and will not hold him back. While in there, the doctors went ahead and got the measurements they will need for his second surgery, the Glenn procedure, so hopefully he won't need another one before then. Henry is still far too small and weak for that next operation, but it's possible he will get it on the earlier part of the window (3-6 months instead of 6-9) to get him a better, stronger physiology. 

So, while the news out of his cath was good, it was also a bit unsatisfying. Henry's heart is still working harder than we would like. Right now, he has to grow. If his body is having to work extra hard to take his feeds, we may need to take a step back to support him so those calories can go to size instead. This might mean limiting his bottle feeds or going back on multi one for a time. Whatever the answer, it is likely that he is going to remain at Children's Mercy for a while longer, so he can be monitored closely as he tries to grow.

Cath lab

Well, we had started on a post for Sunday, but then in the late afternoon we found some blood in Henry's diaper. At least this time we were already down in the PICU. The doctors agreed to see if it would happen again and agreed not to stop feedings. We changed two more poopy diapers with no blood, so we left the hospital late Sunday night. We made it through the night with no phone calls, and when we got to the hospital we were delighted to hear that he had no more blood in his stools, despite pooing with each feeding.

Henry was taken off of milrinone Saturday afternoon, and left on his cocktail of digoxin and enalpril all weekend, so he had a follow up echo scheduled for Monday morning. It was done before we even made it to the hospital around 8:00 am, and the nurse said Henry slept through the whole thing. During the doctors' rounds, they discussed that the results looked slightly worse and that we would have another echo on Thursday to see how his heart is doing.

Monday afternoon did bring some good news as we received professional confirmation just how adorable Henry is. We returned to lunch to find a photographer hired by CMH in Henry's room, and we were asked to sign a release so they could use his picture in promotional and internal materials. Apparently, a nurse was asked for a cute baby to photograph, and she led them to Henry! Once we get copies of those pictures, we will definitely share them! Amateur pictures will have to do for now.

Well, this morning during the cardiologists' twice-weekly departmental meeting, they determined that Henry should go to the cath lab so that the doctors can see more clearly how his heart is functioning and not wait to see if his heart gets any worse. He will visit the cath lab first thing Wednesday morning. It's difficult to say what, specifically, they are looking for or might find, and so there are a number of things that could or could not be done. for now, we are going to try and have a quiet evening. We thank you for your continued thoughts and prayers during this time.

Snowy day

Jason has returned back to work, so I am here keeping an eye on our little man while I also wait for the phone call to return to Topeka to see my sister when she goes into labor :-)

Henry was able to start breastmilk again on Monday after I have been eating dairy free for two weeks. So far, so good! We will most likely need to fortify his milk with Elecare, but the boy can certainly chug down his bottle feedings now! He has been taking more from the bottle now which Jason and I are both very pleased about. (We even had a healthy competition to see who could get Henry to drink more) We have yet to see him take a full bottle, but we are hopeful that is just around the corner for him.

Henry has also been a little more alert and awake than he was last week when he was not doing as well. He also is grabbing on things more, and I have had to stop wearing necklaces and I will most likely be pulling my hair back in a ponytail soon. That boy has a good grip!

The doctors lowered the milrinone today and went up on the enalapril. We have another echo scheduled for Thursday to see how his heart is doing. The doctors may discuss tomorrow on if we should increase volumn or calories tomorrow for Henry's feedings.  At almost seven weeks old, Henry is taking just a little over two ounces per feeding.  

Waiting

 

Our apologies for the long wait for an update, but that has been mostly what we have been doing this week: waiting.

Since we did not need to do a heart cath, Paige and Henry spent last week just hanging out in the PICU. Henry responded well to the milrinone and was looking and feeling better each day. He has worked back up to taking about half of his feeds by bottle - when he is awake - which is close to where he was at before last weekend.

A follow-up echo on Thursday showed no major change in the blood flow in and around his heart, which isn't really good or bad news. His labs showed a good drop in his BNP, which indicates better heart function. The doctors feel is good and stable again, and we are ready to begin weaning him off the milrinone and on to other medications.

Henry has begun receiving digoxin and they will start back up his enalapril later today. These two medications will hopefully take up the job of the milrinone. Again, the enalapril will help reduce the blood pressure in his body, allowing more blood to flow out then back into the lungs. The digoxin will help the single right ventricle squeeze. As long as his right ventricle needs that help in pumping, he will remain on the digoxin. Both of these medications are oral, so he will be able to go home with them. If his right ventricle gains enough strength, and as he grows into his shunt, it is possible he would come off of the digoxin sooner, but most likely he will remain on it until his second surgery. By running the blood returning from the upper body back through the lungs directly, the second surgery will take a lot of the burden off of the single ventricle. It may also take them some time to dial in the appropriate levels of each drug. Each kid is different, so there really isn't a better method than trial and error.

We will certainly keep updating as we progress, but in the meantime we are simply here: waiting on the doctors to sort out the meds; waiting on Henry to grow; just, waiting...

The Long Road

Well, we will not be going to the cath lab tomorrow. After an echo done this morning, the cardiologist in the PICU and the surgeon feel that they did not see any decline in the function (if anything a slight improvement) and feel that the risks outweigh the benefits of doing the cath lab. We still may need to visit the cath lab down the road.

They are also not worried about the narrowing that was noticed on the echo last Thursday. His blood work done this morning did show that his heart is still working harder than the doctors would prefer. So they have increased the amount of milrinone he is taking. This will take 24 hours for us to see how he responds to it.

Over the weekend, Henry was not taking to his bottle like he was earlier.  There are a few things that may be causing this, but the most likely is that his heart is working so hard his body just doesn't have the energy to take food in and digest it properly. Henry would also cry when trying to give him a bottle or his even his pacifier - and it was not a "I'm hungry" cry.  The doctors had increase his calories over the weekend, which we have now cut back to see if that was part of it. Babies usually don't like the taste of the formula we are currently on, and it being fortified doesn't make it taste any better. We have also had to witness our son throwing up. Anyone that knows me (Paige) knows that I don't handle the sound of gagging very well. I would like to report I am still holding up well and haven't gotten sick since before Henry was born.

This week will be spent seeing how Henry responds to the milrinone, as well as figure out his feeding.  Hopefully, as the higher dosage of milrinone helps Henry, he will start feeling better and want to take his bottle again. 

Finally, Henry just needs to grow into the shunt that was put into him in his surgery.   The shunt is 3.5 mm in diameter, and is still a little too big for him, but anything smaller Henry would have outgrown too fast. The shunt allows blood pumped through the reconstructed aorta to flow back through to the pulmonary veins and into the lungs. In comparison to his own vessels, that 3.5 mm tube is the path of least resistance. The milrinone will help the heart squeeze and also reduce the resistance in his own blood vessels, so that more blood will go to his body than his lungs. Unfortunately, he cannot leave the PICU on milrinone. Henry needs to grow so that the shunt does not seem so big, and he can switch to oral medications. So we will not be going home anytime soon. 

[February 7th-14th is Congenital Heart Defect awareness week. For those interested, Jamberry is selling nails and will donate $2 to the American Heart Association.  Please go to  http://alyssay.jamberrynails.net/party/default.aspx?uid=2a3e35eb-8fd4-4387-bc53-3fb3e51622ec

The nails that are providing donations to the American Heart Association are at http://alyssay.jamberrynails.net/product/heart-health-awareness.]

Another downhill

Well we are back in the PICU again. Nana came up Thursday afternoon to help watch Henry while Paige went back to the Ronald McDonald House to take a nap. During the morning rounds on Thursday, the doctors had noticed Henry had not had an echo for awhile, so they sent orders to have one done, and said Henry would get the echo either Thursday or Friday based on the schedule.  The doctors said they didn't expect to find anything as Henry has looked great on the outside as well as his stats are looking great.

Well, as it is with all our timing, Henry had his echo while Paige was gone taking a nap. Shortly after he was finished, he had another one as a problem was seen.

It has been discovered that his tricuspid valve [separating the right atrium from the right ventricle] is regurgitating more than it was before (the regurgitation was first discovered while I was still pregnant with him). The doctors are also concerned with the rate of blood flow where the pulmonary artery was joined to the aorta. It is possible there is some narrowing there, which can happen as the sutures from his surgery heal and scar. Henry's aorta is only a couple millimeters in diameter, so even a little scarring in the wrong direction can narrow the opening significantly. There are some other markers in his labs that indicate his heart is being over-worked. These factors can all influence each other: if the opening to the aorta is narrowing, the heart will have to work harder to pump blood out, and more blood will remain in the ventricle, making it more likely to regurgitate through the valve, making the heart have to work harder...

So for the time being, we are back in the PICU and Henry is receiving milrinone to help improve his heart.  The milrinone may help these issues, and if it helps the heart function and the aorta is not too narrow, we will see it when Henry has another echo on Monday. If enough improvement is seen, Henry will be weaned off the milrinone and monitored to verify that worked.  If there is not improvement or it has gotten worse, we are penciled in to go to the cath lab on Tuesday. This will provide more detail than the echo does. If the opening is just  too narrow, they will be able to address it then with an angioplasty, using a balloon to widen the opening.

Henry is doing fine through all of this. He is continuing to eat and is getting better with his bottle each day. He is also starting to show some signs of consistent weight gain, as he is up to 3.5 kg (7lb 11oz). Whether or not we do go to the cath lab, we will probably be in the PICU for at least a week as they make sure the procedure or his medicine improves his heart function.

Roller coaster

These last few days have been frustrating to say the least. We were sent back down to picu on Sunday thinking Henry had NEC. All the doctors down in picu have agreed Henry does not have NEC despite radiology thinking he does (the power of suggestion; radiology was told x-Ray was to look for NEC so that's what they found). The concerning spots would move, so this has been ruled out for Henry's bloody stools.

The doctors have now decided it is either Henry's blood pressure medication or his diet (aka fortified breast milk). Although it's most likely the medication, we still were advised to change his diet so that hopefully we are not in the hospital forever. Henry is now on Elecare formula. In the mean time, I get to cut dairy out of my diet, continue on pumping, and wait 14 days to reintroduce breast milk in case Henry was having a dairy intolerance. As some of you may know, I am a big dairy person.  I love cheese, and ate ice cream all the time while pregnant with Henry. There were several weeks where I would go through two gallons of milk on my own in a week. We believe that if Henry was intolerant to dairy he would be showing other signs. I will be discussing this further with the nurses and doctors, but in the meantime I'll be cutting out dairy.  

Jason and I are also getting frustrated by the comments of "he looks great" and "why are you still here" by the various staff.  We know they mean well, but it's hard to hear as Henry has not looked sick but we are still playing this game of figuring out his medication.  We are thankful for how well Henry looks (babies with HLHS don't have the best color to them, and we know at some point Henry will start to look blue, an indicator he is on the verge of needing his second open heart surgery).  

One of the things Jason and I get asked a lot are "let me know if there is something I can do". While we are still in the hospital, there isn't a whole lot we are needing. One way to help is to collect the tabs off aluminum cans.  Jason and I are staying at the Ronald McDonald house. These can be turned in to the Ronald McDonald house where they will recycle and use the funds to help support the houses like we are staying in. We are glad that we can stay at a place close to the hospital, but still allows us to get away for awhile and get a good nights sleep.

Uncertainty

Henry has been put back on NEC watch and sent back to the PICU. He began having blood in his stools again Saturday afternoon and after a few more overnight and a suspect x-ray, the team upstairs felt it would be best to monitor him in the ICU.

 

The PICU team isn't sure. There was an x-ray from Friday or Saturday that was highly suspect for pneumatosis (air in the intestinal walls). Pneumatosis is often indicative in newborns of Necrotizing Enterocolitis (NEC), which is when intestinal tissue dies. Part of the reason for all of our uncertainty is that all of his other vital signs and labs are really good and he is not showing any outward signs of NEC, only a suspect (but not fully conclusive) set of x-rays. And, of course, the blood in his stools.

So at this point, he is back on bowel rest, which is standard for infants at risk of having NEC.The ICU team is waiting on administering antibiotics, as they feel there is still time to do so if he shows any other clear signs of NEC, and we don't want to render them ineffective by using them when they aren't needed. For today, he will continue receiving his regular medications through the feeding tube, so he his only getting fluids through his IV.