Monday, January 31, 2011

Day 92

Things remain largely unchanged around here. Holden is about the same, although his oxygen sats trended down for most of the night. That led to a middle of the night xray showing us that- surprise- his lungs are really wet. We already knew that, but there isn't much we can do about it while he's dehydrated from throwing up and diarrhea. We can't add any more diuretics in the mix to dry out his lungs until that's under control. His BUN is trending up the more dehydrated he gets, and additional diuretics will be even harder on his poor kidneys.

He woke up in the early morning hours crying in pain as usual, but this time he had some decent pain medication on board. That made a world of difference, and he got through the rest of the morning without as much pain as he's had in the previous few days. Trent went back to the house again this morning, and I'm left alone here again to overthink and overanalyze. Always a dangerous thing!

I'm so incredibly tired of this endless circle of questions. I'm so incredibly tired of wondering if Holden will ever get better, if he'll ever feel well. I'm so incredibly tired of watching him suffer. I am just so incredibly tired of it all!

While trying to get out of my funky mood, I was reading a book of prayers we received this weekend along with the many toys and gifts for Holden. One of them really resonated with me...

"Though you have made me see troubles, many and bitter, you will restore my life again; from the depths of the earth you will again bring me up." Psalm 71:20

I sometimes feel like I shouldn't feel grief or sadness or anger at our situation, that I should be able to move on- Put on my big girl panties and deal with what needs to be done. I feel guilty for admitting to the world that this sucks, and that I'm exhausted. I feel so selfish for thinking about how much this sucks for me when Holden is clearly the one to feel sorry for.

But then, I think sometimes we need to feel the breadth and depth of emotions that come with this new reality. This does suck, for all of us, and we can't heal if we don't acknowledge the pain. It is definitely a balancing act. To feel but not dwell.

So back to the Psalm...We bear our burdens, we ask God for help and trust Him to do what He does best — restore. Maybe this is how hurt becomes hope?

Sunday, January 30, 2011

Day 91

It's been a whirlwind weekend, with lots of highs and lows. I'll start with the lows and get those out of the way. We STILL don't know what's causing Holden to throw up so much. (Are you getting as tired of reading that line as I am of typing it??) We started him on erythromycin with the hope that it would help his stomach empty faster, and therefore reduce his vomiting. It causes diarrhea, which they actually wanted to see in Holden's case. As it turns out, that wasn't really his problem. He doesn't have a problem going to the bathroom, he has a problem with throwing up. I'm pretty sure they know that, but they're trying all sorts of things at this point trying to make something stick. He's been on the med since Wednesday, and we haven't seen any positive changes. The only thing we've seen is increased pain and stomach cramps. :(

I had a fun little raving-lunatic-mommy moment with the doctors early this morning. (In my defense, nights and early mornings are really bad for Holden, and I've been by myself for those bad times this weekend. I haven't slept for two nights, much less showered. He screamed, cried and whimpered for five hours this morning before the doctors came in... So does any of that make my ranting attack justified??) I pretty much screeched this at the doctor this morning: If Holden doesn't get an order written for pain meds by this evening (something besides Loritab and Tylenol, which don't do anything for abdominal pain like this, per the pain management team), he won't be getting the erythromycin. Or they can stop the med a day early and call it a wash. Up to them. I'm still not sure what they've decided, but we'd better have that morphine PRN in our back pocket by tonight, just in case.

His oxygen saturation continues to go up and down, but we haven't really been very focused on his lungs lately. Once we get his digestive issues under control, that will have to change. I'm sure he'd appreciate having one less tube in his face!

Now for the good part of the weekend... After Holden's bad morning yesterday, he had a really great afternoon. Luckily, his company waited until the afternoon to join him, and he had such a good time. Trent's Granny, Aunts Karen and Billie, Kristen and Taylor came up first, and they started off the present opening. (I'm going to sidetrack a little- One of his gifts was a Build a Bear teddy bear specifically designed for kids with medical issues. A portion of every sale goes towards charitable grants too. Holden's bear has stitches around its heart, just like him. I didn't even know about that line, and I think it's so cool!) Trent's aunt Mary Sue, her husband and their granddaughter Brooklyn followed and brought more gifts and a card Brooklyn made for Holden and had signed by her class at school. It's always a little extra special when a young kid thinks of things like that. :) Amy and Rachel arrived shortly after and filled the last space left in the room with more sacks full of gifts. Holden's crib is now full of every noise-making toy ever produced, and I don't think he's going to be bored any time soon!! His official big day isn't until Wednesday, but he's already had a great birthday. I wish I had known we were going to have an early party, and we could have had an early cake to go with it!

It still breaks my heart a little bit to be celebrating such a huge milestone here in this hospital that we've come to love/hate, but you all helped make it a little brighter in here. Thank you for that!

He had everything off of his face for a few minutes while we put a new NG tube in, and I had to get a picture of my sweet boy without tape on his cheeks... Aren't they just so kissable?? And his eyes look really green/brown in this picture.
 I love how he throws his arms back when he's not sure what's going on. One of his little quirks.

 Three people taking pictures at the same time. He's a popular subject.

 Digging in his doctor box.

He loves his tool box!

 He likes to eat baby wipes. Is that normal, or another one of his quirks?

Saturday, January 29, 2011

Day 90

I don't have time to post a detailed update, but just wanted to let those of you who are asking about Holden know that he's still about the same. He's not throwing up as much in the afternoons now, but nights and mornings are still pretty rough on him. One of the new meds they're using for motility is working as far as giving him bad and frequent diapers, but it hasn't seemed to help much with the vomiting. The drug is also causing painful stomach cramps, so we've traded one evil for another.

He had an impromptu early birthday party today, and his room was packed with people and presents. So he's had a pretty decent afternoon today. I'll post a more detailed update when I get a chance, maybe when my husband comes back after the weekend to give me a break! :)

Thursday, January 27, 2011

Day 88

I know I haven't posted in a while... I've been waiting for some good news- any news, actually- before I updated. Unfortunately, we don't have any new information, and he's getting a little bit worse each day. We've been trying everything we can think of to help his poor beaten stomach, but nothing has worked so far. He's been vomiting more than ever the past couple of days, and he spent most of yesterday and last night screaming and crying in pain. One of his meds is Zofran, which is what they give to chemo patients to help with nausea, and that's not even making a dent. We're adding a new drug today, an antibiotic which is supposed to help with motility. This will be the third of this type of med we're trying. I'm not terribly optimistic, as the other drugs we've tried haven't worked, but we keep hoping to find the magic answer. We changed his feeds to an elemental formula, just in case his body is having trouble digesting proteins, but that hasn't helped very much either. So basically, we're still in the same boat as we were before, but he's getting worse. Please continue to pray for answers... We desperately need them.

That's only one of his issues right now. We're still dealing with his respiratory problems as well. He had another echo done yesterday to check his heart function. We know that something is different because his lungs are wet and he's requiring more oxygen, but the echo didn't show any major changes in his function. It's great that it doesn't look worse, but it's not improving either. He still has a lot of regurge from his tricuspid valve (which acts as his mitral valve), and we're fairly certain that's what is still causing his pulmonary issues. However, there isn't an easy fix for that. We're going to try some new cardiac meds (which aren't really new, as he's been on them all before), and hope that we can find the right combination to hold him steady until transplant. We're still waiting on a heart. The waiting game is hard, but we knew it would be.

We ask that you continue praying for our sweet little man. He's brave, and he's tough, but he can still use a little extra strength in his corner.

(I'm editing this at 4:30pm to say that he's actually a little bit better this afternoon... He's not throwing up as much, and he seems to feel a little better- even with his new fever. Maybe one of his new meds is working? Or maybe it's all those prayers. :)

Monday, January 24, 2011

Day 85

I'm in a weird mood today... Not really depressed, but not myself either. It's one of those days when I can't stop my mind from wandering all over the place, thinking about everything that's happened, and everything that's still to come. I hate these days, because it's so hard to stay positive. It's hard to remember the many blessings we have to be thankful for when it seems like every time we start to get our feet back under us, life comes along and knocks us back over.

He's still having a rough time. He continues to throw up and feel crappy, and we continue to ask questions that have no answers. His oxygen requirements keep going up, his respiratory rate goes up. He's in pain but we can't figure it out. We have no idea what's going on in that poor little body of his, and I feel like I'm at the end of my rapidly fraying rope. I want answers. I need answers. Holden needs to feel like an almost-one-year-old baby should feel, and not lay in bed whimpering and puking all day. His previously perfect body looks like a battlefield, and that doesn't even begin to show what kind of mess is going on inside. Of course, Holden doesn't realize any of this. He continues to amaze. He is truly stronger than I am, in so many ways.

So cross your fingers for him one more time. Cross your fingers that this mystery illness will pass and we can pretend we are normal again. On second thought, forget the fingers. Please kneel on your knees instead. Or maybe do both...

I wonder, will there ever be a day when I don't make myself sick with worry about this baby? I mean a day without exhausting, real, true, valid worries? I feel myself becoming a little too anxious, a little too neurotic. (And I didn't have room for more crazy in my head to begin with.) I am seriously not like this in the real world. I'm fun. I'm spontaneous. I'm someone who appreciates the little things all around me, and is quick to laugh. I'm so not me right now.

I will never be the same and I don't know if I'll ever want to be. I wish sometimes that I could explain our life in here a little bit better, a little more clearly. I feel so disconnected from some things, yet I feel more connected somehow to others. To some of our friends and family. To strangers who have shared similar experiences, who we now call friends. To the doctors and nurses who we now consider part of our extended family. They're who we see and talk to daily. They're the ones who know what we live through and struggle with every single day.

It isn't that I don't have amazing friends and family. It's more that I don't have anyone who just knows. Who knows the tedious repetition of pumping drug after drug into a tiny stomach. Who knows how crappy and heartbreaking it is to hold your baby as he gets sick over and over and over again. Who's lived through weeks of sleepless nights worried about oxygen tubes and feeding tubes and breathing tubes and drainage tubes. Who takes a deep breath every morning while still lying on the couch, trying to muster the courage to look across the room and see if your baby made it through the night. Who knows the isolation of closing off the world- not because you want to, but because you don't have a choice. You know, people who just know.

Yet the people who've traveled this road with us so far are amazing. Truly amazing. I am so very grateful for old friends and new ones, near and far. For those who understand what we're going through and for those who- thankfully- will never have to. We have people all over the world who love us. Add that kind of love to the phone calls, gifts, cards, letters, emails, messages and the prayers- the many, many prayers- it all adds up to overwhelm a girl who usually feels very uncomfortable receiving such kindnesses. I think most of us do. No one likes to be the “charity case.” We’d all prefer to give the help, make the meal, be the genius who comes up with the perfect gift. But sometimes you have to sit back and know that you are loved and cared for, and just say thank you. We know there are angels around us, because so many of you are those angels. We will spend the rest of our lives paying your kindnesses forward. I am humbled. I am grateful. I am in awe. There is so, so much to be thankful for.

We spend our entire lives planning the details of our future (I do, at least), when really it's the experiences we could have never expected, and most definitely would never hope for, that truly end up making us what we are. 

I am full of gratitude for all the blessings that are mine. I am thankful for modern medicine, because it has saved the life of my baby more times than I can count on my fingers. I am thankful that my little boy woke up this morning- It is nothing short of a miracle each and every time he does. I am thankful for the doctors and surgeons who have made it possible for him to be here today. I am thankful for your prayers and concern- I'm certain your prayers have brought untold blessings into our lives. These past few months have been among the best, worst, hardest, most fulfilling, soul searching, growing times of my life. And for that I am thankful.

So please don't be alarmed when I sound down and depressed about my lot in life. Sometimes it's just so hard. It's simply hard. Some people praise us for being strong... I don't think we're strong. I think we're numb from the sheer exhaustion of hoping and praying and wishing- of trying to mend our little boy through the force of our will alone. It is exhausting. It's also worth it. Holden is worth it all.

A nurse was singing the song "Mama said there'd be days like this" earlier this morning, and I've had it stuck my head all day. I'm glad that Mama said there would be days like this- not weeks, months, or years. Days I can take. Days I can handle, one by one. And tomorrow is a new one. Hallelujah.

Sunday, January 23, 2011

Day 84

It's been a busy few days around here, some good and some bad. Holden had seemed like he might be making a little progress with his stomach issues, but last night they came back. He's been throwing up all night and all day today, and we can tell he doesn't feel good at all. He did perk up for just a little while this afternoon, but went right back to feeling puny after a short time. The doctors came through tonight and said that we would be consulting with the GI team again in the morning, and we'll outline a plan from there. I don't really care what the plan is at this point, I just want them to fix my baby!

Holden's had a lot of visitors over the weekend. My mother-in-law graciously offered to stay the night up here last night so that Trent and I could go out and celebrate our anniversary. The previous few nights were pretty calm, so we felt safe enough leaving him with her... Unfortunately, he didn't have a good night at all, which means she didn't either. I hope she gets some sleep tonight! Last night was the first time I've slept in my own bed in months... I had forgotten how comfortable that bed is!

Tobie, Keith and Amy came up to visit this afternoon, and Amy was the hero of the day... She cut Holden's hair! We left the top long, but cleaned up the sides and back so that he looks more like a little boy. He looks so grown up and handsome now!!

Hopefully I'll have more information to post tomorrow. (I'm going to be really frustrated if we don't.) In the meantime, I realized that it's been a while since I've put any pictures up. Most of these are a little older, but he hasn't really been in a happy picture taking kind of mood lately. Enjoy!

Think he's tired of the constant paparazzi?
 Getting prettied up after bath
 I know many women who would kill for those eyelashes.
 Happy boy... I think this was two weeks ago?

 I love his look of intense concentration. These are his Beads of Courage, and this is only about a quarter of what he's collected.
 Trying unsuccessfully to get him to eat Cheerios. (Note the "wings" on the side of his head.)
 He loves to get a hold of the stethoscope, then wants to use it on everyone else. I'm sure he knows how it works by now!
 Sitting in his walker for the first time. He loved it the first night, but hasn't been feeling well enough to enjoy it the past week.
 This is just one round of meds, I think the first morning ones. Poor kid. :(

I don't know why, but this face cracks me up.
 Getting his hair cut by Miss Amy. He was a champ!

 No more wings!

 My handsome little man. :)

Friday, January 21, 2011

Day 82

We're still holding the course here. Holden's vomiting has improved slightly, and he doesn't seem to be in as much pain as before. It is still an issue though, and we're all still trying to figure it out. We've started him on a new drug to increase digestive motility, and it's supposed to help empty his stomach faster so that he doesn't throw as much up. We'll use it through the weekend and see how much it helps. If the new medication doesn't do the trick, we'll run another test on Monday to check and test the contents of his stomach, and check the sphincters in his stomach. If those tests don't show anything to fix, the doctors say we'll have to assume it is the malrotation causing his digestive issues, and we're back to square one.

If it's the malrotation, we'll be between a rock and a hard place. The only fix is surgery, but he isn't strong enough from a cardiac standpoint to survive a surgery. He already has trouble gaining weight (all heart babies do), and constantly throwing up the calories he needs is a bad thing. He's also throwing up all of the meds needed to manage his heart failure, so that's something else to look at. We'll be trying a few different things to manage his vomiting as best as we can, and I'm hoping that some of these tests show something we can fix. I really don't want to worry about the malrotation and surgery until later. (I'd prefer never, but you can't always get what you want. :) Please keep praying for Holden this weekend- pray that we can find out for sure what's wrong with him, and find a way to fix it without a surgery. We truly appreciate the continued prayers... I don't know how we would have made it this far without them!

Wednesday, January 19, 2011

Day 80

I don't have much new to report, but I think we've had a slightly better day than yesterday. His vomiting is improving- barely- and he had a few happier moments this evening. He's still so up and down, it's hard to say that he's feeling better, because then he turns around and looks horrible again. Poor baby. :( Maybe we're on an upswing though... It would be great if he could catch a break for a couple of days!

We tried turning his oxygen off again this afternoon, but he still seems to need it. Maybe once he stops throwing up all of his meds, they'll start working a little better? I think that's how they work...

We're for sure holding off on the surgery, since it's not a necessity at the moment. If it becomes a problem at any point, we won't have a choice, but for now we wait. Most of us have decided that the malrotation isn't the culprit anyway, at least not for these symptoms.

On a good note, we made some progress in speech therapy today. Even though he's sick, they still want to work with him each day, so that we don't lose any of the progress we've already made. He took a few bites of vanilla pudding (granted, I stuffed them in his mouth when he was distracted- but he didn't gag, and he actually swallowed them), and he also drank about 1/2 an ounce of water out of his cup. That's the best session we've had since they started working with him, so it gives me a little bit of hope. (Of course, he threw it all up within five minutes, but that's beside the point... We have to look at the bright side of things around here. :)

Tuesday, January 18, 2011

Day 79

It's been a very pukey morning here. Holden's been throwing up even more this morning, and the new formula they were trying him on (Progestemil) stinks to high heaven. It doesn't smell like formula, and I can't even describe the smell. Fortunately, they've switched him back to another formula that smells more like regular milk... He's going to throw it up regardless, so it may as well not be awful. It's a small thing, but those small things make a difference in here.

We spoke with the surgeons earlier, and they feel like the benefits of doing the surgery on his intestines aren't worth the risks when it comes to his heart. The surgery will need to be done at some point, but if we can wait until after transplant, his odds of surviving it increase. One of the surgeons said that he may not make it through the surgery at this point. I don't know if she was just being melodramatic, but we don't want to take any chances that aren't immediately necessary. Besides all of that, we're not even 100% positive that the malrotation is what's causing all of his problems to begin with, so the surgery may not even fix him. The final call hasn't been made yet, but it looks like we'll delay the surgery for a while.

We tried to take him off of the oxygen for a little while this morning, just to see how he would respond, and his oxygen saturation immediately went down. So we still don't know why he's requiring oxygen when he wasn't before, but we do know that he'll be on it for a while.

We're calling around to some of the doctors we've dealt with in the past, trying to get some second and third opinions. I don't know if frustration is getting to us and making us impatient, or if we're justified in thinking that more can be done... I hope that this week brings big changes for Holden, for the better. I can only pray for guidance and wisdom for his doctors at this point...

Monday, January 17, 2011

Day 78

It's past time for Holden to get some good news, but the poor kid just can't catch a break. We still don't know what's going on with his lungs and O2 sats, but we may have some answers from the GI team after the tests Holden had this morning. I don't know if I've ever mentioned this on here, but Holden's whole cute little body- not just his heart- is completely backwards. In medical terms, that's called situs inversus, and it means that all of his organs are mirrored from what yours and mine would be. In most people, the stomach is on the left side, but Holden's is on his right side. All of his organs are opposite like that. When the intestines are reversed, it's called malrotation, and it can potentially cause a lot of problems. Evidently, some people can be malrotated (even without the complete situs inversus like Holden has), and never show any symptoms. They may never even know about it. Holden is not one of those people. The doctors think that because of the malrotation, his intestines are twisting and untwisting, causing his digestive issues and pain. (If the intestine were to stay twisted, it would be called a volvulus- or a very bad thing. He doesn't have that- yet.) The only treatment for it is a surgery called a Ladd procedure. From what I understand so far, the question isn't if he'll have to have the surgery, it's when. We'll have to talk to his heart surgeons and see what they have to say about the timing of the surgery, but it looks like another OR trip will be in our near future. :( This isn't the news I wanted, but at least we know what we're dealing with now. We should have more information in the next few days, and in the meantime, please pray that we'll all make the right decisions to bring Holden back to us healthy and happy!

Sunday, January 16, 2011

Day 77

Holden is still about the same today... I had thought we might be on an upswing after last night, but no such luck. He was awake and pretty happy for a little while last night, and some friends who visit every Saturday finally got to see him with his eyes open and playing. They've been patiently waiting to see him like that! He went back to sleep before they left, and woke up crying and in pain again... That continued through the night, and into today. The doctors still don't know what's going on with him, and it's beyond frustrating at this point. We don't even know if all of his symptoms are related- He seems to have something going on with his digestive system, although we don't know what. His chest xrays look pretty wet, but we don't know why. (We're going to put him back on IV Lasix, and see if that helps dry out his lungs at all. He's already on high doses of PO diuretics, but they're not working like they should.) There's a reason that his oxygen requirements have increased, but we don't know what that reason is yet either. In short, we don't know much of anything. We've consulted with the GI doctors, and they're going to run a few tests tomorrow to see if they can find anything. We're also going to consult with the pain management team and hope that they have some new ideas. We know that it's not pancreatitis, so that leaves it wide open... Please pray for guidance for his doctors, and pray that we can figure out what's going on with him before he slides back any more!

And to change topics completely, CHD awareness week is coming up in February. Before I get on my soapbox, I'd like to share a few facts about Congenital Heart Defects.
  • Congenital heart defects are America’s #1 birth defect. Nearly 1 in every 100 babies is born with a CHD.  
  • Congenital heart defects are the #1 cause of birth defect related deaths.  
  • Congenital heart defects are the leading cause of all infant deaths in the United States.  
  • Each year approximately 40,000 babies are born in the United States with a congenital heart defect. Thousands of them will not reach their first birthday and thousands more die before they reach adulthood.  
  • Almost half all children and adults with complex congenital heart disease have neurological and developmental disabilities.
  • More than 50% of all children born with congenital heart defect will require at least  one invasive surgery in their lifetime.
  • There are more than 40 different types of congenital heart defects. Little is known about the cause of most of them. There is no known prevention or cure for any of them.
  • Twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD research.
  • Of every dollar the government spends on medical funding and research, only a fraction of a penny is directed to CHD research. 
I try really hard to stay off of my soapbox as much as possible. However, many people aren't aware of the facts, and most believe- as I did- that something like this will never happen to their baby. Why didn't I know about any of this when I was pregnant?? Prenatal detection can mean the difference between life and death for your baby- literally- yet I was completely oblivious. I worried about all of the other diseases and syndromes and defects that we're all aware of, but I had no idea that my baby could be the 1 in 100 born with a CHD. You rarely see these heart babies on billboards, or websites asking for research funding, on the covers of magazines, or in the news stories about infant medical struggles. Why is that? Why are these kids being forgotten? Why doesn't anybody know all of this until it happens to them? Probably because nobody shared the information. More can be done- More should be done when it comes to saving a child's life. More awareness, which creates more funding, which pays for more research. The best thing we can do to advocate for our babies is to spread awareness about Congenital Heart Defects- Get educated, and educate others.

Saturday, January 15, 2011

Holden's Story

We’ve had many people ask for the full story of Holden’s journey… It’s going to be difficult to condense so much down, but I’ll do my best. Holden was born on 2/2/10, and on the outside, he was perfect in every way. Our pediatrician came in the morning before we were released and told us she heard a murmur in his heart. He appeared to be fine, and he showed no indications of anything major going on, so she let us take him home with the promise that we’d see a cardiologist the next day. We went to Dr. Pearse’s office in Frisco as instructed, where we expected her to tell us he had a small hole or something else minor and easily fixed. Instead, about halfway through the echo, she stopped and told us that we needed to sit down, because there was a serious problem. They saw that his pulmonary artery and aorta, the two major arteries that carry blood in and out of the heart, were backwards. This is called Transposition of the Great Arteries. Usually, this is an immediately life-threatening issue, and she wanted him to be taken by ambulance to Children’s Medical Center in Dallas. Once we got to the hospital, they were a little confused, because most babies born with TGA are born blue, and unable to survive more than a short time without surgical intervention. After hours of echocardiograms and other tests, they found that Holden’s TGA is congenitally corrected, because two chambers of his heart are also backwards, which kind of directs the blood flow to where it should be. They also found that his pulmonary artery was tighter than usual, with some extra stuff growing in it- this is called pulmonary stenosis. He also had a couple of holes in his heart- a VSD (which was small and eventually closed on its own) and an ASD. Since his blood flow was somewhat normalized and he seemed to be doing fine, with no outward signs of anything wrong, they decided to let him come home and wait to do his surgery until he was a little older and bigger. Many people have asked why he needed a surgery at all, if his heart was functioning even backwards… He still needed the surgery because the part of his heart that’s pumping blood to the body is only meant to pump blood to the lungs. The muscle is compensating for now, and putting out more than it should, but we knew eventually it would wear out, and he would go into heart failure. We had no way of knowing when that would happen- it could have been a few months, it could have been years. Once that happens, there is no surgical fix, so we knew we’d need to do the surgery before it was too late.

We had frequent echos and visits to Holden’s cardiologist, and we got to keep him at home for nine months before the doctors and surgeons decided it was time to operate. He came in for his heart cathertization on Sept. 20, and his orginal surgery date was Oct. 18. His surgery got bumped when they had an unusual number of babies come in needing emergency surgery, and he was rescheduled to Nov. 1. Dr. Forbess is his surgeon here at Children’s, and he planned to do an Arterial Switch operation, to re-route the pulmonary artery and the aorta to the correct places. First though, he would need to core out the pulmonary valve to resolve the pulmonary stenosis before the switch could happen. We were told at our pre-op appointment (not before, which I’m still a little upset about) that there was a very small chance that he wouldn’t be able to core enough out of the pulmonary valve to do the switch. If the valve couldn’t be cored out enough, the pressures would have been horribly wrong once the arteries were switched, and Holden would have been worse off than before. Still, it was a very small chance, and we needed to try to do the surgery. The Arterial Switch is the go-to surgery for kids with TGA, and it essentially fixes them for life. We had to try.

Unfortunately, Dr. Forbess wasn’t able to clear the valve enough to do the switch and complete the surgery. He was as aggressive as possible, and Holden has a pacemaker now because he has complete heart block. His surgeon did everything he could to fix him, but it just wasn’t enough. He did close the ASD with a small patch, which was all he could do. He closed him up, and we were told that Holden would need to be placed on the heart transplant list immediately. That was devastating news, and I think the whole day was a blur for all of us. We found out later that he wouldn’t need an immediate transplant, but that it was likely in our future. It was a relief to have a little time, but the relief didn’t last long.

We were told that Holden should come out of the surgery the same as before, if not a little better because of the ASD being closed. However, after we extubated him and he started to wake up, he was coughing up blood. Nobody could figure out why it was happening, but he crashed pretty hard that night and had to be reintubated. He had serious pulmonary edema, and was basically drowning in his own blood and fluid. More than a few doctors and nurses told us after the fact that we almost lost him that night. I am so thankful I didn’t know that then, as I was already a basketcase. He was on the vent support for another week, and we tried to extubate him again on 11/9, my birthday. He didn’t last more than nine hours before the same thing happened again, and we had to reintubate him. This time, we knew something serious was going on, and we started looking at his heart rather than his lungs. Sure enough, he had new issues with his heart that were causing all of the pulmonary problems.

I won’t go into all of the details of the next month, because I could write a book about all of the problems and issues we had while he was intubated and knocked out. (Plus, from here on, I started writing in the blog, so you can always go back and read through the posts for more information.) He was in a drug induced coma for most of the month, to keep him from fighting against the support. At one point, the swelling got so bad that he didn’t even look like my baby anymore, and again the doctors told us later than he was almost gone. His organs were all failing, and nobody knew what to do for him anymore. We finally knew the answer to when he would need a transplant… As soon as possible. We started the process of getting him listed for a transplant that day, and he was listed within two days. He started out as a 1A on the list, which is the most critical. (He’s now one step down from that, a 1B.) The next day, we put a PD cath in his stomach to drain some fluid off of him and try and help his organs recover a little bit. We were amazed at the amount of fluid we were able to get out of his poor little body, and we were even more amazed by the difference it made. His organs eventually started functioning properly, and he got to the point where we were talking about taking him off of the vent. This was a miracle in itself, as we had accpepted that he would have to be on the vent until a transplant.

We were able to extubate him, although we’ve been back and forth on the vent. He’s gone back on it for short periods, but he always fights his way back off. He’s been through pancreatitis, on top of everything else, and he’s had various other issues going on, like the flash pulmonary edema he’s still prone to. Every week, every day seems to bring new problems and issues to the surface, and he remains a total medical mystery.

I think the most frustrating thing of all for me is that we brought him in here essentially healthy (at least outwardly), and he’s had every complication imaginable. And the worst part is- they didn’t even fix him. All of this would almost seem worth it, if we could leave here knowing that his heart is fixed, and he’ll live a long, happy life, just like a normal kid. That didn’t happen. That won’t happen. And I have to learn how to be okay with that.

But we know that he has the ability to fight for his life. We know that our Holden is in there… He’s had a few really good days among all of the bad, and I’ve been able to see my baby again, even if briefly.

He’s made it this far. He hasn’t given up, and we haven’t given up on him. We may not get to take him home until he gets a transplant, or he may improve so much next week that they kick us out. The thing with Holden is- you never know. I have to learn how to be okay with that too- the not knowing. I have to trust in our nurses, doctors, surgeons and GOD. I have to give it all up, and pray that the Lord sees fit to save my baby’s life once again… He hasn’t let me down so far.

Day 76

My mood seems to match the weather today... Poor Holden is still having a rough time. He's been waking up in pain and screaming all night and morning. He had one short period where he seemed to be in better spirits, but that didn't last long. For the most part, he's inconsolable. He's throwing up again today, and we've stopped his feeds completely. One of the doctors thinks it's pancreatitis again, which could also explain the oxygen sats dropping. We're going to do an extra set of labs to see what his amylase and lipase counts are... While we wait to find out the results of that, he's getting morphine to make him more comfortable.

I really, really hope we're wrong, and it's not pancreatitis. That's the most likely guess right now, but if that's what it is, it's a huge setback. We've been in here for so many holidays already, and our anniversary is tomorrow. (Everybody keeps asking what we're going to do to celebrate... I can only respond with a blank look... What can we do? We have to be here with Holden... Maybe we'll get the hospital cafeteria to make us something super special. :) Holden's birthday is 2/2, and I was really kind of hoping that we'd be home by then, or at least on our way, but I knew that was more of a dream than anything. It's so depressing to think of more time being added on to what we've already spent in here, but it's even more depressing to watch my poor little man in pain and not be able to fix it. Hopefully, we can figure something out quickly... I'm ready for my happy boy to come back!

(I'm editing this an hour after I wrote it to add that I'm really not as bitter as this post makes me sound... We have a lot to be thankful for, and we are so thankful. Sometimes the frustration just gets to me, that's all.)

(And I'm editing this again this afternoon to add that the lab tests came back, and the numbers don't look like pancreatitis. This is both a good and bad thing... It's good because pancreatitis is maddeningly frustrating to deal with and resolve, as those of you who have been reading from the beginning may remember. I am so thankful that we don't have to deal with all of that yet again. However, it's a bad thing as well, because now we still don't know what's wrong. We're all stumped. I guess we should get used to this feeling, since Holden is consistently confusing us. It's like a game of medical Clue, and it sucks!) 

Friday, January 14, 2011

Day 75

Ugh... It's been a long, frustrating day. Late last night, Holden's O2 sats started dropping, but he rebounded somewhat after a while. We had a chest xray that didn't show us anything alarming, so we decided to just watch him a little more closely. His sats never did come back up to where they were before, but they were tolerable.

This morning, he was really pukey again, and didn't keep any of his meds down at all. We found out this afternoon that one of his anti-nausea meds wasn't given this morning, due to a communication error between nurses. He got the med around lunchtime, and that's gotten a little better. His feeds are totally off, and will remain off until we figure out what's going on with his oxygen, his lungs, and his stomach- and until we figure out how it's all related.

His sats started dropping again while the EP nurses were running tests on his pacemaker. (He has yet another weird little quirk with his pacemaker, and his heartbeats are firing in two different areas... Not a big deal, but it shows up really strange on the monitors, and makes them alarm like crazy. They said this is really rare- like he needed something else rare in his health files!!) Anyway, his sats started getting scary low, and they finally put him back on oxygen. The oxygen immediately helped, but now we need to find out why he started requiring more oxygen to begin with. If you feel like you've heard this story before, you have... He's done this a few times already, right before the flash pulmonary edema showed up. I'm praying hard that this is something different!

The doctors and nurses seem to be more on their toes and watching him closely now, which is great compared to earlier. It seemed like we had to push really hard to get anything moving today, and we're not used to that. It's an adjustment going from the constant staff in the ICU to trying to find someone to help on the floor. I don't feel like they moved quickly enough to put him back on the oxygen, or to find out what the problem was to begin with, but now they're running all of their tests and he's much more comfortable. Hopefully, all of us are on the same page now, and Holden can get the care and attention he needs!

Thursday, January 13, 2011

Day 74

We haven't been demoted back down to the ICU yet, so that can be the good news for today... He's still doing about the same, holding his own up here. Trent's mom stayed up here yesterday while we went and repacked clothes, changed tires and headlights, and took Trent's grandmother to the doctor. It wasn't really a fun day for us, but I still appreciated the break. I'm sure Susan was ready to break out of here after twelve hours, but she kept everything under control. :)

I don't have too much to report... We haven't made much progress, but we haven't gone backwards either, so I'll consider that a small victory. We're trying some new meds for Holden's stomach issues, and they seem to be working pretty well. He's still a little pukey, but it's better than it was. The antibiotics he's on for his ear infection don't help his digestive tract at all either. We're still working with him on eating by mouth, but he's not making as much progress there as we'd like to see. I have faith that he'll eventually get there, but it's going to be a long road. :(

Tuesday, January 11, 2011

Day 72

Well, we've made it through the first 24 hours, so maybe we'll get to stay on the floor this time! :) He's been pretty calm all day, and sleeping for most of it. He hasn't been acting like himself, and we can tell something's going on... They looked in his ears, and he has another ear infection. I feel so bad for him, but I'm also a little relieved that it may be something easily fixable. With everything he's been through here, we always think worst case scenario, and sometimes we forget to think about the normal baby issues that might still come up. He'll start antibiotics tonight, and hopefully that will help him out a little bit. I'm so ready to see those happy smiles again- we waited so long for them!!

He's still pukey, but we're going to try a few things differently tomorrow to see if we can help him out. I pray we can... He's so pathetic when he's getting sick all of the time! We're also not having much luck with speech therapy and getting him to eat by mouth again. Maybe if we can get his stomach issues under control, it might be a little easier to push him along. We've pretty much accepted the fact that he'll be going home with a feeding tube and pump- if we get to go home- but it would still be nice to have some forward motion happening!

My mother-in-law is going to stay up here with him tomorrow so Trent and I can go home and take care of a few things... I know she'll be fine with him, but say a little extra prayer for her too please. I know he can be a handful if these antibiotics kick in and he gets to feeling better! :)

Monday, January 10, 2011

Day 71

The big news today is we're moving to the floor... Let's hope that everything works out this time, and we can stay there! Holden still seems to be feeling about the same, a little out of sorts but nothing huge. He's still throwing up quite a bit, but that's probably due to his stomach being stretched more than it's used to with the bolus feeds. We're going to keep them the same today and see how he adjusts (if he adjusts).

His xray looked a little better- not great, but better, so maybe the new diuretics are working to get some of the fluid out of his lungs. With all of this going on (the sweating, need for increased diuretics, etc), the doctors say that we're going to have to start working to manage chronic heart failure better than we have been. That makes the need for a new heart a priority for him. We don't like to be reminded that no matter how good he looks, his poor little heart is still broken, but reality has a way of setting in. We hope to keep him comfortable, and manage the heart failure effectively until that happens... Please pray for continued progress for Holden, and no setbacks once we're on the floor!

It's really hard to pray for a heart for him, because that means another momma's arms will be empty. It's heartbreaking no matter how you look at it. But it's also the most precious gift a family can give, and we pray for the perfect heart to be generously given to him in His perfect time. We already know prayers are answered... We are reminded daily that he is a miracle!

Sunday, January 9, 2011

Day 70

Following the relative calm of the past few days, I should have seen a few dark clouds ahead... Holden's not really worse today- nothing I can put my finger on- but he's not the same happy baby he has been recently. He's throwing up more, hopefully just due to the bolus feeds and nothing more sinister, and just doesn't seem to feel right. His chest xray was hazier this morning, which is never a good sign in Holden's world. It wouldn't be so worrisome if we weren't aware that he's prone to flash pulmonary edema, and we can usually see it coming on the xrays before he shows any physical symptoms. We're going to try a different diuretic in addition to the three he's already taking to see if it helps any. I really pray that it does, especially if they're going to try and send us to the floor this week. They have a lot of sick babies out there who need to be in here, and Holden looks like a pretty good candidate to be moved to make room. He may be sick, but there are babies who are much worse off than he is... So we're just going to have to trust in different doctors and hope that they can continue moving forward with his progress. I really wish we were in a better place before being moved, but we can't predict everything. Maybe his lungs will respond appropriately and dry out, and his xray will look crystal clear tomorrow morning. That probably won't happen, but that's what I'll hope for. :)

(And I asked if anyone made haircutting house calls on Facebook yesterday... From the responses I got, you all thought I was kidding. The poor kid needs a haircut, no joke! Look at the pictures- does that hair look like anything to joke about?? :)

Friday, January 7, 2011

Day 68

Today is my baby girl's twelfth birthday... I can't believe how quickly she's grown up, and become such a beautiful young woman. It's always a surprising gift when you can look at one of your children and realize that not only is that your baby, but they are someone who you actually like. She is amazing, and I am so proud to be her Momma. :)

While she (hopefully) has a fabulous birthday with her Dad, we're still in the ICU. The doctors want to sort out some of Holden's feeding issues before we go up to the floor, so we'll be here until at least Monday. We're going to try what they call bolus feeds, where he's fed a larger amount at one time through his tube instead of small continuous feeds. That's how the stomach works in normal babies, and we hope to have him back to normal- or some version of it- soon!

Thursday, January 6, 2011

Day 67

We're still holding the course, which is always a good thing in here. Holden's going back and forth between being really happy (the happiest he's been in here, I think), and suffering from a little bit of withdrawl. We're still holding off on cutting any more from his meds, since we made such huge cuts earlier in the week, and he seems to need a little more time to adjust. He's back to not sleeping at night, which sucks, but shows us our baby is getting back to normal again. I have to remember that the lack of sleep is something we've prayed for!

He's been off of the oxygen support since yesterday evening, and he's still holding his own. His chest xray looks to be clearing up too, so hopefully he can keep up and keep the tube out of his nose. Everyone is still in the dark as far as finding out why the flash edema happened to begin with, but at this point the best we can do is watch him closely and pray that it doesn't happen again. Of course, I'll be a nervous wreck for a while, waiting for it to suddenly appear again... Finding out the cause would help to calm my nerves, but we can't always get what we want. That's one big lesson learned on this journey!

The only big change we're making today is moving his feeding tube into his stomach, which just happened. We still aren't sure that he's ready for this, but I'd rather they make the change here than up on the floor. Hopefully he'll tolerate feeds NG, and we won't have to take another field trip to Floroscopy to have it put back. It's so terrifying for him, and he's not nearly as sedated as he was before.

Speech therapy has been working with him to overcome his oral aversion, and this morning he ate two Cheerios all by himself. It seems like such a small thing for an eleven month old baby to feed himself two Cheerios, but for him it was a major step! Our hope is that he will continue moving forward, and take more of his nutrition by mouth... It's going to be a long road, but once he reaches his goal, we can say goodbye to the feeding tube, and get the last of the tubes out of his face.

They're talking about moving us back to the floor tomorrow, provided everything goes well with his feeds today. I'm going to love the relative peace and quiet on the floor (compared to the ICU), but I'll miss the level of care he gets here. Not only are the nurses and doctors here the best, but they know him so well after all of the time we've spent here. That makes a huge difference, as we found out last time we were on the floor and got demoted back to the ICU. Maybe this time they'll listen to us up there when we tell them something is wrong. :)

Wednesday, January 5, 2011

Day 66

I don't have too much to report today, but I've noticed people get antsy when I don't post for a day. :) We're going to try Holden off of oxygen support for a little while this evening, and see how he does on room air. If he passes that test, he'll have one less tube in his nose. We're also talking about trying to feed him NG tomorrow. (He'll still be fed through the tube in his nose, but the tube will be in his stomach instead of his intestines.) Nobody seems to be sure if he's ready for it or not, but we're not making any progress by waiting, so it's worth a shot. He's not as happy today as he has been, and he doesn't seem to be feeling well. He's showing a few symptoms of withdrawl, so maybe all of the cuts we made to his meds are catching up to him. We'll most likely leave them alone for the next day or so to let him adjust before we make any more massive cuts. He was up most of the night with abdominal pain, but seems to be doing a little better now... Hopefully he's past the worst of it!

Tuesday, January 4, 2011

Day 65

Holden's status is largely unchanged today... We decided to keep most everything the same, since we've made so many changes in the past few days. The only big change we're making today is going up on his feeds through the tube, hopefully to full feeds by tomorrow morning. We got him to take a few bites of banana baby food earlier, and he seemed to really enjoy it. It doesn't seem like that big of a deal, but in the context of his situation, it's huge. :) We may never find out what happened to cause all of these issues the past week, and I may have to be satisfied just knowing he's improving. It's frustrating, but what can you do??

We also have a prayer request for another family here... Emma is three months old, and she is another "puzzle baby" like Holden. Her parents have been trying to get her listed for a transplant, but they're hitting some speedbumps along the way. Please keep Emma and her parents in your prayers as well.

I've included a ton of pictures below, as promised...

This is what Trent does for fun in here... Poor baby.

Another wagon ride, before he got sick again last week.
Playing with Uncle Cody
The bed he switched to on the 8th floor... It looks like a monkey cage.
Sleeping with his seahorse again, he loves that thing!
Kaitlyn's favorite gift this year, a Kindle from Uncle Cody.
Rylie was pretty excited about her gift from Uncle Cody too.
They are loving scarves this season.
Such a little ham!
She wanted to get these Granny reading glasses... I vetoed.
They got their faces painted at Grapevine Mills on NYE... They felt very cool.
Poor Cody.
Playing with Holden before we went to the hotel on NYE.

While we went to the hotel, Holden had his own little party in the ICU. Left to right- Lane, his doctor; Brian, one of our favorite nurses; Jeremy, one of our favorite RT's.
 I love Holden's face as he's looking at Lane in this one.
The girls waiting for the fireworks to start. We had a pretty decent view of downtown Dallas out of the window.
At the Rainforest Cafe. They didn't want to leave!
Kaitlyn's flamingo...
And Rylie's tree frog. (Sitting in a heart, not a tree, per request.)
At the ICE show. So cold, but so fun!
Silly Rylie.
I thought this was appropriate. :)

The face I woke up to this morning... Love it!!!