Moving on up take two!

Henry has improved from over the weekend!  We had been told since Monday that he should be going back up to the floor on Wednesday and the orders have been made!  The doctors in the picu told me they don't want to see Henry again until his next surgery (in a nice way of course, they love Henry but they hope he won't need to return to the picu)

I will update more later.  Henry's nana is coming up today and I'm hoping to go outside for a little sunshine and enjoy the nice weather before it gets cold again.

A Fast Weekend

This weekend has gone by quickly. I had sent Jason to go get us donuts Saturday morning and I headed up to the hospital room to see Henry. Upon my arrival, not only had Henry moved rooms, but his nurse informed me that they were giving Henry a blood transfusion. It was a shock, as the nurse had asked if we had been called (the answer is no, we hadn't). Henry was receiving a transfusion due to the low level of his hemoglobin in his last test. With a child with Hypoplastic Left Heart Syndrome, the doctors do not like to see the hemoglobin level drop below 14. Henry's level had been at 13 and had dropped to about 12.

Henry's color improved over the day, but the poor man was very fussy as the doctors still wanted to wait to try to feed him. The day was spent making sure Henry was not having any additional problems. Henry had an x-ray done earlier Saturday morning, and everything is looking great. As the day progressed, we learned that Henry was not the only baby down in the NICU having this problem.

Sunday Henry was finally able to receive food again! The doctors started him on just plain breast milk of 10 ml over an hour on bolus feedings. Henry's meals will increase an additional 6 ml every 6 hours. Henry was less fussy today, so that has made Jason and myself feel a little less tense. Henry has been a pretty quiet baby, for that I am grateful, but hearing him cry and be fussy all weekend was just heartbreaking to me, as I know that all my poor little man wanted was to receive some real food.

My sister was able to make a visit up to Henry on Sunday. She hadn't been up since his surgery, and had yet to hold our little man. Mallory looked like a pro holding her nephew.

She even indicated that Gunner was kicking a few times too while she was holding Henry. Hopefully the two won't be kicking each other (too much) down the road.
 
Tomorrow, we hope to go off the IVs and switch back to taking oral medication.  No word yet on when we will move back upstairs. 

Speed Bump

Over the past three weeks, as Henry has been rolling along in his recovery, Paige and I have done our best to keep our expectations in check. HLHS is a serious condition. We know Henry will encounter difficulties, so we try to remain as prepared for them as we can.

Today, we hit a speed bump. This morning Henry had - there's no real polite way of saying this - a bloody stool. Now it is not uncommon for healthy babies to have some blood in their stools on occasion, and there are a number of perfectly rational and harmless causes for this. Henry is not a healthy baby, however. Kids with a single heart ventricle are at risk for a number of more serious issues, primarily caused by a lack of oxygen to parts of their digestive tracts. 

At this point, the doctors and nurses believe that whatever has caused this will work itself out with a couple of days of "bowel rest". This means feedings have been suspended since 7:00 am Friday morning. So far, lab work and x-rays have not shown us anything to think this is a more serious issue. 

Even though Henry appears to be doing well otherwise, he is not taking the news of no food very well, and has been quite upset all evening. Since it will be a couple of days before he will get proper food again (he is getting some IV fluids), and since his NG-tube was irritating him, the feeding tube has been temporarily removed. For the first time since New Year's Day, we get to see Henry's full face:

 

In an abundance of caution, we have relocated back to the PICU for at least the weekend. If the diapers clean up over the next day, we may be able to resume feedings through the NG-tube on Sunday. The goal is to return to the recovery floor as soon as possible, but we will simply have to wait on Henry. Hopefully, this first speed bump is merely that, and we will pick up the pace shortly.

Estimated Due Date!

I will start out by stating a disclaimer that this was typed out by Paige instead of Jason, so please excuse the terrible spelling and grammar.

Today is Henry's estimated due date! We can't believe all the progress we have made in the last twenty days.

We were able to start bottle feeding him earlier this week. The Occupational Therapist has been very impressed by his volume intake as well as the sounds he is making. The first day he took in 8ml, yesterday he took in 10ml, then this morning he took in 25ml! I was able to bottle feed Henry yesterday as well as today. At lunch, the little man only took in 5ml, but that is still doing good! He wouldn't take much at 3:00, but half an hour later he sucked down 15ml. Our goals with the feeding are consistent weight gain for 2-3 days (Henry gained 5 grams yesterday), as well as getting Henry to feed orally. If we are unable to get Henry to feed orally or to show consistent weight gain, we may need to look into a stomach tube for feeding.  Many babies with HLHS use up so much energy for oral feeding that they are unable to gain enough weight. This would only be temporary, until he is strong enough to no longer need it.

We have some additional goals that Henry and us must do in order for him to go home. One is to pass the car seat test. Henry will need to prove he can be in a car seat and not become distressed. We will also need to take a CPR class. We had taken a class earlier with St. Francis Hospital, but this will be a good refresher, and my parents will also be taking the class. We will also be trained on the equipment we will need to take home to monitor Henry, as well as things we will need to look for while we wait for Henry's second surgery.

Jason returned back to work today, and will work Thursday before returning to Children's Mercy on Friday. On Friday, I will be heading down to Belle Plaine, KS for my grandpa's (Henry's great-grandpa's) memorial service.  

We are very grateful for everyone's thoughts and prayers.   

Movin' On Up

To the 4th Floor!

We still have some key milestones to reach, but today was a big day! 

We'll have more details in the coming days, but we are one step closer to home!

The Waiting Game

We have settled into a typical hospital routine of waiting. The last major change made for Henry came overnight on Wednesday, when they slightly increased his enalapril (from .50 to .55 mg). Since then the doctors have been watching his numbers - his oxygen saturation and blood pressure - to be sure that his heart is sending an appropriate amount of blood to his lungs and his body.

[A medical aside, to the best of my understanding: the enalapril is medication to lower his blood pressure. The pressure in the arteries going to the lungs is much less than that in the arteries going out to the rest of the body. For HLHS kids, they monitor the SpO2, and if it gets too high (in the 90s, which would be expected for healthy hearts), then there is too much blood going to the lungs. To correct this, they increase the enalapril. When they do this, however, they must make sure his blood pressure, the diastolic in particular, does not get too low. Henry's BP has been good for him, registering around 75/40 (normal for a two week-old would be about 78/50). If his diastolic BP were to drop to about 30 or below, he might begin having other issues, e.g. with digestion. After the Norwood, they typically start kids Henry's size at .30 mg and do not like to go over .75 mg, so there is plenty of room to work, if necessary.]

 

 

Over the past couple of days, Henry's numbers have been great. His breathing rate is coming down and his SpO2 appears to be holding in the mid- to upper-80s. His feedings have been going great. He is still receiving 54 ml of milk through the feeding tube every three hours. By the end of the weekend, he should be getting this over in 30-minute periods, eight times a day. Through all of the feedings, he has not thrown up once and his "digestion" appears to be very good. He has also been doing some great practicing on his pacifier!

The occupational therapist was not able to make it by on Friday, unfortunately, so we are still waiting to try some swallowing. Henry should see the OT on Monday, and we have been told that is the last approval we need before moving up to the transitional/recovery floor. Assuming that goes well, we will be one more (big) step closer to home by Monday night!

New Normal

This week may be the most difficult so far - not for Henry, but for Paige and I. It was time for me to return to the office on Tuesday, if only for a few days this week. Paige came back to Topeka with me Monday evening to get her car, see her kitty, and to sleep in her own bed for a night. I think that was difficult for both of us, in our own ways, to be so far away from Henry, but we have complete trust in the people at Children's Mercy. As they have told us each night, it's OK for us to rest, and no news is good news.

For this week, I am at work in Topeka until Thursday and will be back up in Kansas City on Friday. The plan is for me to work from the hospital on Friday, if Henry lets me. Based on the past couple of days he may not let me, though, but for all the best reasons. On Tuesday, they pulled Henry's feeding tube back from an NJ-tube to an NG-tube, meaning it is now in his stomach. They also continued to lower the rate of flow in his cannula, and he spent much of Tuesday at the lowest setting. 

On Wednesday, while Paige was back in Topeka for some appointments, we received some more good news, courtesy of Nana:

Henry is now off of the high-flow cannula! They will monitor him overnight to make sure he maintains good vitals and that he doesn't need a small amount of oxygen. His breathing is the last big step before he is eligible to move out of the PICU and up to the recovery floor.

But like a good only child, I think Henry wants more, and he wants it now. With his feeding tube in his stomach, he began bolus feeds Wednesday afternoon. He'll be getting more milk dripped in for a couple of hours at a time, with an hour or so break in between, in order to start building toward a more normal feeding schedule. If he is really good and finishes all of that, we might even try a bottle on Thursday! 

I do want to thank everyone reading for following us on our little adventure. As Paige and I try to catch our own breaths, you may find the length of time in between updates will vary. Try not to worry, as it is most likely poor mom and dad feeling a bit tired. And please stick with us! Even if we haven't heard it directly, we certainly feel your support. With any luck, we will soon clear the first stage of our journey and bring Henry home.

Weekend at Mercy's

The past few days have been quite eventful for Henry, in positive ways. We are now only five days since he had the Norwood surgery, but over the course of this weekend, Henry's heart made some big strides. (My apologies, as this one might get a bit more medical.) They ran several scans and x-rays Friday and Saturday. He had an ultrasound to confirm he does not have any blood clots in his arms or legs. His echocardiogram showed good flow, so he was able to come off of his two IV heart medicines, milrinone and heparin. These have been replaced with enalapril and aspirin (a quarter tablet, every other day!). On Saturday, Henry was able to start feedings through an NJ-tube that is passing the breast milk straight to his intestines. The goal will be to get him to feed orally, but until we are confident he has adequate blood flow to his digestive tract, this will allow him to start getting nutrition and growing. By Sunday, he was up to 7 pounds!

The good news kept rolling on Sunday, as they removed his second chest tube and the arterial line in his belly button. Now, all Henry has on him are his feeding tube, the high-flow nasal cannula, and his standard vitals sensors. For this being his fifth day after surgery, this is truly amazing!!

But as I said before, there are a lot of things for us to balance on this tightrope. Henry's lungs are what we are focused on most right now. One test showed some differences in movement between the left and right sides of his diaphragm, which is likely causing his rapid, shallow breathing. The doctor did not think they were too far out of sync (paradoxical) and it should hopefully fix itself in time. This is why he is receiving constant air through the high-flow cannula, to insure he gets enough air on each breath. Some positives are that he is at room air (21% oxygen) and they have been slowly lowering the flow rate all weekend.

They also found his left vocal cord is moving slower than the right (paresis). This is a possible side effect of the Norwood procedure, as some of the nerves in the vocal cords extend down to the heart, near where they are operating. The good news is that they do see movement, and they were able to see the left one completely open and close. Because it is not paralyzed, he will be able to swallow, but it make take time. Oral feedings will need to wait until they are confident both cords can close quickly enough to keep food from going into the lungs.

All in all, we are clearly moving in the right direction, but it is a marathon, not a sprint.

First Week

Thursday, Henry turned one week old and it was his second day post-Norwood. Paige and I are truly amazed at the strength of our little man. Today, the nurses removed the temporary pacemaker wires, one of his two chest tubes, the central IV line in his neck, and he came off the ventilator. He has received some pain medicine off and on since Wednesday night - but since he had open-heart surgery a little over 48 hours ago, I think he can be forgiven! As all of the nurses and doctors have said, he is a Rockstar!

We are entering the grinding phase of Henry's recovery from this first surgery. For each two or three steps forward, there will likely be a step back. By the end of Thursday, he was back on a nasal respirator, to keep his oxygen up. He did start peeing Wednesday, but almost too much as he was a little dehydrated. That, combined with just coming off the ventilator, led to some shallow breathing and so he needs some oxygen. This is the tightrope the medical staff will be walking with Henry over the coming weeks as we work to get him breathing on his own, off of his heart medications, eating regular meals, and whatever other milestones we need to achieve. With the kindness and expertise of the staff at Children's Mercy, the love and support of friends and family, and the strength of Henry, we believe we will all be home together soon.

One Down...

Henry's surgery went very well. Paige and I spent a long, uncomfortable night having a sleepover with Henry in his room. I attempted to sleep in a recliner that wouldn't recline, while Paige laid on a folded up couch with a metal slab through the middle. It was worth it though, as we were able to hold him again before his surgery. For the first time Monday night he opened his eyes for Paige and I to say hello. 

He was wheeled off with the anesthesiologist shortly after 7am, and we did not see him again until a quarter after 4 that afternoon. The nurse came and gave us regular updates, which I tracked on Twitter. (If interested, you can see them here.) For a nine hour day, it really went by quickly. 

The surgeon felt the procedure went well and he was responding normally to this type of surgery. The nurses had all prepared us for how he would look after surgery, and they did such a good job that he looked almost normal to us! They were able to close his chest after surgery, so he was clean and well-covered when we saw him. The doctor in the Pediatric ICU thinks Henry is doing great: his heart is strong and is not showing any signs of complication from the surgery.

We have spent most of today waiting for Henry to flush the excess fluids caused by the surgery from his system (i.e., pee). Hopefully tomorrow, as the fluids come off, they will start feeding him some breastmilk and be able to wean him off of the ventilator. He is slowly coming out of sedation and has been opening his eyes more. As he wakes up, he will start getting fussier, and will require more attention from the staff, but he hasn't even had morphine since 6 o'clock last night! 

We are so grateful for the skill and kindness of the staff here at Children's Mercy, and for the love and support of all of our friends and family. The road home is still a long one to hoe, but we are off to a great start!

First Surgery

Henry will be going in for surgery Tuesday morning. 

At 7am, they will begin the prep work to get him connected to most of the monitors and IVs, and they will begin delivering anesthesia. The first incision will be at around 8am, and the surgery itself will be 3-4 hours. The good news (relative term) is that they will proceed with the Norwood procedure. In short, this will reconstruct the major arteries coming from Henry's heart to distribute the blood to both the lungs and the body directly from the right side. This is good because it means the doctors feel comfortable that his lungs have recovered enough from his earlier respiratory distress. Also, it means we can do more than the "Hybrid" procedure, which would introduce a whole new timetable for his recovery and other surgeries. This procedure will, however, require them to put Henry on a full bypass machine and stop his heart to perform tasks in, on, and around the heart. 

After surgery, they will perform an echocardiogram in the OR, and monitor Henry's surgery site for an hour or two. After returning to the Pediatric ICU, the nurses and doctors will monitor him for another hour or two. It will likely be 3 or 4pm - or later - before Paige and I will be able to see him. 

The nurses, doctors, and surgeons have given us an idea of what to expect after surgery, but there are numerous variations, depending on Henry's reactions. Suffice it to say, he will be closely watched over the next few days. 

We are all laying down, trying to rest up for a big day tomorrow. 

Proper Introductions

The past two days have been quite long and exciting for Henry. A good deal of time was spent from Thursday afternoon into Friday morning attempting to put in a central line. After trying to put the catheter in both arms and both legs, they had to do an ultrasound to find a deeper, more stable vein in his leg. To that point, he had been so quiet on the ventilator, in voice and movements, that they only needed a local anesthetic to get it done. Finally having some time to rest Friday afternoon, Henry continued to improve and by Friday evening he had gotten stable enough that they were able to remove him from the ventilator! This meant that Friday night, Paige and I were able to properly hold him for the first time!

While we were thrilled, it may have been just a little bit too much excitement for the little guy. The rest of the evening he started getting more fussy and his vital signs were getting a little wild. We let him go back to sleep for the rest of the night, as we went to do the same. 

Saturday turned out to be a great day. The overnight rest did wonders for Henry (all of us, actually). His numbers leveled out and are mostly trending in the right direction. The prostaglandin he is receiving for his heart started to have a bigger - expected - impact on his personality. He became more fussy, and for the first times he gave us some full-throated cries - music to our ears! All together, this meant he could finally get a bath from mom and dad, but that he hated it the whole time! After meeting a few more friends, we were again able to hold him for several hours. 

And late in the evening, Henry and Paige finally got some much needed skin-to-skin time. I'd say they enjoyed it:

D Day

Paige was a Rockstar yesterday. After I kept her out until nearly 1am on NYE, she woke me up at a quarter after 4 saying her water might be leaking. As she called the hospital to ask questions, I had to quickly pack my bag (she had been packed for about a week). She finally decided she would feel best if we went to the hospital and we left a little past 5. I told her I would drive my normal speed, unless she needed me to go faster, and she agreed. A few miles outside of Topeka, I asked her if she had felt any contractions, and she said she wasn't sure if they were real or Braxton-Hicks. Then I found out she had downloaded an app to track them, and they were about seven minutes apart. So here she is, laying in the backseat of my car, having contractions, and not even making a sound! By the time we got to the hospital and they checked her, she was 4cm dilated and 100% effaced; so, yes, this was baby day! Luckily, Paige's parents, sister and her sister's family were able to make it up to Kansas City in time to see her in labor (and after the epidural!) I say lucky, because she was not in labor for long. When the nurse came in to see how Paige was doing, she looked surprised and said, "Oh, there's his head!" The family left, the doctor came in, and 15 minutes later Henry joined us! She has been doing great since; tired and sore, but calm, alert and engaged. Thank you all, for your love, help and continued support - from Jason, Paige and Henry!

Henry's Heart

Shortly after our babymoon in October, Henry was diagnosed with hypoplastic left heart syndrome (HLHS). This news really knocked us for a loop and led to weekly appointments over the last ten weeks. When I get a chance, I will put up some links with more details of this condition, but in a nutshell it means the left side of his heart is underdeveloped. In Henry's case, he has no functioning left ventricle, and the remaining parts of the left side are very small. In a normal heart, the blood returning from the body enters the right atrium and flows to the right ventricle, which pumps the blood to the lungs for oxygen. The oxygenated blood returns to the left atrium before flowing to the left ventricle, which pumps the blood out to the body. Without a left ventricle, the right side will need to pump the blood out to the body. To do this, there are a series of procedures, performed in three surgeries that will, in essence, rearrange the plumbing around Henry's heart. When complete, blood returning from the body will flow directly through the lungs to receive oxygen, and then into the heart for the right side to pump directly into the arteries. The first surgery will need to happen sometime within the next week, before the oxygen levels in his blood become unacceptable. So, the respiratory distress has been an unexpected complication, but appears to be passing. We are simply waiting on the lungs to strengthen enough for him to go through surgery. 

Henry Is Born

Henry James Caudle was born at 10:04am on January 1st at Children's Mercy Hospital in Kansas City. Happy New Year to us! Being nearly three weeks early, we were encouraged by his size: 6lb 11oz, and 20" long. He was rather quiet and the doctors quickly figured out that his lungs were still underdeveloped, and did not expand as they should have after birth. He was put on a ventilator before being moved into the NICU. Overnight, the surfactant he was given helped expand his lungs and they have begun reducing the pressure on the ventilator. The hope is that within a couple of days, he may come off the ventilator completely, clearing the way for the next stage.