Friday, December 31, 2010

Day 61

Yesterday was both a really good and really bad day... The girls were here, and we got to do their Christmas (finally!). They had a great time, and I loved being able to spend time with them. I'll post some pictures at some point, when I find my cord to upload them. I'm hoping to take them to do something fun this afternoon, if Holden is stable enough. I want them to have a good time, even in these circumstances.

Unfortunately, Holden has been having some trouble in the middle of everything. He went down for a CT scan yesterday afternoon, and started having more trouble breathing when he was on his way back. It got pretty bad, and we were told they'd have to re-intubate him. We put him back on Vapotherm and VPAP, trying anything to avoid the breathing tube. The doctors weren't terribly optimistic, but over time through the night, he's managed to control his breathing a little more. It looks like we'll be able to get away with not going back on the vent for now. We still have no idea what's happening... Last time he had the flash pulmonary edema, we were able to pinpoint a specific drug that caused it, but we don't have a smoking gun this time. He has all of these symptoms- like the sleepiness, breathing issues, sweating, temp fluctuations, etc.- and he's a total puzzle. His echo didn't show any major changes in function, his CT scan didn't show any major bleeds... We're all stumped. So please pray for Holden and his doctors today... We need to figure out what's going on!

Wednesday, December 29, 2010

Day 59

Well, we are officially residents in the CICU again. :( Around midnight last night, Holden started having some issues... His sats continued to drop, he was vomiting more and he had some scary diapers. He was tachypneic (meaning he was working really hard to breathe), his temperature dropped and he was hypothermic, which caused his heart rate to drop as well. He was scary pale, and pouring sweat. The doctors on call for the floor didn't seem to know what to do with him, so the ICU doctors came up and decided to bring him back. His temperature is back up now, and his work of breathing isn't as bad as it was, but he's still lethargic and hard to wake. We have no idea what's going on, and the doctors seem to be stumped as well... All of the tests we've run so far have come back clean. I'm terrified that they'll tell us it's a heart issue, again. If all of the tests and labs come back normal, we'll have to assume that's what it is, and I really don't want to hear that news. He'll have another echo today to see if we can pinpoint anything. Until then, we're just watching and anxiously waiting. We'd really appreciate any extra prayers you can send up for him today!

(And the girls are going to be here tonight... I've been so excited that they finally get to come, and now all of this happens. I so didn't want to be back in the ICU for their visit... We'll make it work though!)

Tuesday, December 28, 2010

Day 58

Holden really enjoys keeping us on our toes, and today he decided to test us out again. He slept through most of the night (that alone was a total shock), and he’s slept the rest of the day through as well. This morning, I thought maybe he was just rewarding me for all of the sleepless nights I’ve spent with him in the past. By lunchtime, I was starting to get worried, and now that he’s slept the day away, we’re really concerned. We can only wake him up for short periods of time, and even then he’s lethargic and not himself. His O2 sats were dropping all morning, and his chest xrays were hazier than they have been. That means our little man had to get the dreaded tube put back up his nose. As much as he hates it, the extra oxygen has helped his numbers. (And the nasal canula is better than the breathing tube, any day.) We also got to take another exciting field trip to fluoroscopy to re-place his feeding tube. When he was gagging and throwing up earlier, the tube just started sliding out of his nose… This was the first time that the tube has come out without little man’s help, but the end result was still the same. Placing the tube down there isn’t fun, for any of us, and I hate that he had to go through it again. Even though he’s been asleep for most of it, this has been a rough day for him. The worst part is not knowing what’s really going on with him… We have no idea what the problem is, and it’s so incredibly frustrating not having a plan in place to fix what ails him. It's hard not to be eaten alive with the frustration.

But whenever I start to get too frustrated or upset, something happens that reminds me again how blessed we are to even be on this journey. Another couple lost their baby today, after only knowing him for a few short days. There are many who would do anything to have my worries. Instead, they only had their babies for a few hours, days or months. I think that thought and say a pray of thanks to accompany it every time. Yes, we’re back on oxygen. And we’re on our way back to an operating room at some point, either for another surgery or a transplant. But Holden hasn't given up, and we haven't either.

For a short time, I’ve been able to forget all of the nasty things ahead and focus on my baby instead. I was able to leave the fear behind and think of all miracles we’ve already witnessed, all of the answered prayers. I felt that familiar fear again today- the fear I thought was behind us, at least for a little while. But as awful as it is to feel that fear again, it’s good sometimes to be reminded of the contrast between fear and faith. They are opposites. They can’t exist in the same heart. I choose faith.

Monday, December 27, 2010

Day 57

We have quite a few updates today, both good and bad... My ex-husband texted yesterday morning and said that he and the girls were running fevers and sick. They went to the weekend clinic, and they have the flu. Kaitlyn also has an ear infection. They were still running fevers this morning, so it doesn't look like they're going to pass through it very quickly. :( The girls are so upset about not being able to come up here, but we can't take the chance of them infecting anyone else. No matter how careful they are, they can still pass it on, and there are too many sick babies here to take that risk. They're both devastated, and I am too. :( They go back to school next week, so I'm praying they feel better at least by the weekend. I'm determined to see them before they go back to school, no matter what!

In other news, we got moved to the 8th floor this afternoon. We were told to go ahead and settle in, and not get too excited about going home, as we're still here for the long haul. It's hard not to be excited about the move though, since it is still a step in the right direction- out of the ICU! He had a much better day today than the past couple of days, and he's been in a pretty good mood... He even got to eat a little bit earlier while speech therapy was working with him. He had peaches, applesauce and graham crackers. (Tiny bites of all of them, but it's a start!) We'll have to continue working with him, because he's still very gaggy with anything taken by mouth, but I'm really excited about the fact that we're beginning the process.

We've noticed a few pros and cons to being on the 8th floor already... We can have food and drinks in the room, which I'm a huge fan of. I've gotten really tired of drinking hot bottled cokes, and I am loving drinking my drinks- over ice, with a straw!- in the room. We don't have to take turns going to eat now, and that's a plus as well. We also have a bathroom in the room here, so no more nasty public showers! It's the little things that make me happy.

Things that don't make me happy include the fact that I've had to stop nursing. He hasn't really nursed since he's been here, but I've been pumping for two months with the hope that he would resume nursing once he got off of the vent. With all of his eating issues, that's not a possibility anymore. They have so much milk saved up from the past two months that we've had to send some of it home with relatives, so he'll at least continue to get my milk... I'm just a little sad that our nursing ended so abruptly like this.

I'm also a little unhappy about some other things, but they're small things when I look at the big picture. His eyes seem to be turning brown, which I was so hoping wouldn't happen! (I was actually surprised that they hadn't turned brown before this, seeing how much he takes after his dad otherwise, but I was really hoping he'd keep his blue eyes.) They're beautiful eyes regardless, and I'm so happy to see them open that I shouldn't complain at all. :)

And Starbucks has discontinued the Caramel Brulee Latte that I've been living on for the past two months... Very depressing. They've tried to pass off a couple of other drinks as being similar, but they evidently lie. ;) I'll have time to find a new drink before we leave, unfortunately...

But to keep things in perspective, no matter how much longer we have to stay here, we are so grateful with the progress he's made. We pray endlessly for continued progress, and we very much appreciate all of you who continue to pray with us!

Saturday, December 25, 2010

Day 55- Christmas

The first part of our Christmas has actually gone pretty well, considering we're in the ICU and not at home... The hospital really does try and make the holiday as special as possible for the kids in here. Holden got a visit from Santa this morning, which went better than expected... He didn't exactly smile at him, but he didn't scream in terror either. I'm going to mark that experience as a success. :)

I don't have much to report as far as medical progress... Holden hasn't been feeling his best today. He's been really sick to his stomach (both ends, poor baby), and he hasn't been his happy self today. We don't know if it's withdrawl from the sedation meds and methadone, reaction to the increased feeds going to the top part of his intestines instead of the lower, or maybe even the stupid pancreatitis again. We were going to try and start working with him to take small amounts orally, just to get him back in the habit, but that's on hold again. :( Whatever it is, I want it to go away so my sweet boy can enjoy his first Christmas!

We'll have the second part of our Christmas (our "real" Christmas, as far as the girls are concerned) when the girls get here tomorrow... Until then, I've taken a bazillion pictures. Enjoy, and have a Merry Christmas!! :)

Friday, December 24, 2010

Day 54

It's Christmas Eve, and Holden's already gotten one of his gifts- just a little early. We loaded up IV's and portable monitors in a wagon and set out to look at the trains. We took him for a spin around the unit first, to make sure he would be stable enough for the big trip downstairs. Along the way, we saw most of his fan club (consisting of doctors, nurses, NP's and techs), and he charmed everyone with his sweet grin. He was pretty happy to be out of his room... I would be too, after spending two months within the same four walls! His reaction to the trains was more wide-eyed wonder than smiles, but he had probably forgotten there was a world outside of room 3. :)

He continues to do well without respiratory support, but he still has digestive issues. He's gagging and throwing up, and having really loose stools. We're still pushing forward with the feeds (which are going ND now, thanks to Holden's helpful assistance last night), and we're just going to keep pushing until he becomes symptomatic again. Which hopefully won't happen... I'm about ready to blow this popsicle stand!

One of the doctors, Dr. Clay, brought Christmas dinner in for the families here tonight. While I probably won't actually eat any of the food (since Holden has once again boycotted sleep), I still think that is so incredibly generous of him. It just shows again how caring and kindhearted the people who work here are. We are amazingly lucky to have this team working with us to get our baby back.

I can't believe that Christmas is really here, and we are still here... I never saw this coming when we checked in for his surgery so many weeks ago. Honestly, I'm ready for a new year. This year has been a roller coaster of the highest highs and the lowest lows, and we're ready to get off the ride now. I try to remind myself daily of one of the most important lessons learned- Perspective is everything. I have two beautiful daughters who are smart and funny and kind. My son is alive and recovering, even if slowly. And someday, whether it is next week or next month or next year, we will get to take him home. WE ARE BLESSED. The coming year will be a year of continued miracles. Of changes, and victories. Of JOY. I'll look for it everywhere, in everything I do, every day. Because you usually get what you expect out of life, right? :)

Thursday, December 23, 2010

Day 53

Another busy day... Holden's had a great day today, and we've had some excitement around here! Biggest news first... Notice anything missing?? He has one less tube in his nose. :)

After the excitement of taking the tube/tape off, he got out of his bed for physical therapy, a first... Granny, Karen, Kristen and Taylor came to see us, and Granny and Karen came back in time to see him playing on his blankets on the floor. Granny got to hold him for a little while, and I'm sure that made her day. When they left, we tried (unsuccessfully) to get him to take a nap... We talked to a few more doctors and then Granny B and Paul came up to bring us some of the packages we had mailed to their house. I'm sure she's regretting offering her services as temporary post office by now! They watched Holden while we went to eat dinner, and he finally took a short nap. I guess this means he's getting his personality back... He was done sleeping before he was born.

When the GI doctor came in to speak with us, he said that he doesn't think that pancreatitis is really even a problem anymore. (We're still a little confused by this opinion, but we'll try anything at this point.) The lipase are still elevated, up to 1000's this morning, but if he's not symptomatic, the dr. doesn't see any reason to not try starting him on normal feeds again. I'm not sure if that's going to work or not, but we'll see... We were going to take things slow, but Holden had other ideas. He must have heard us talking earlier, and he decided he's already done with his feeding tube. Trent was sitting next to the bed, and Holden ripped out the tube... He ripped the tape off the side of his face and everything. He really wanted that NG tube out. We're trying to decide what to do now... We don't want to rush him, but we don't really want to go through getting the tube back NJ again either. Man, he still knows how to keep us on our toes! I'll keep you posted. :)

I've been a busy (read: annoying) photographer lately...

 This seahorse was one of his Christmas gifts, and he loves it! He hugs on it when he thinks nobody will catch him being sweet. :)

 Playing with some more of his Christmas presents, on the floor! It's the first time he's been out of the bed in almost two months, so it was pretty exciting.
 Happy boy... I've sure missed those cheeks!!

Wednesday, December 22, 2010

Day 52

We've had a pretty good day today, which I think Holden deserved after the first part of his week. He was in a great mood and pretty much pain free for most of the night last night and this morning. My brother flew in from Virginia, and he and my mom stopped by here on the way home from the airport. Holden was in a great mood, smiling and being his cute charming self. He did well until lunchtime, when he suddenly started acting like he was in pain again. He's been sleeping off and on since then, so I hope he feels better! I was so happy to see him pain-free this morning, and I was glad that my family got to see him when he was in one of his better moods too.

He's weaning down on the pressures with his oxygen, and still doing really well. We're also going to try weaning some of the sedation, slooowly. He's on a lot of medication, and we'd like to trim the list if we can. His lipase count was up in the 800's this morning, not down like we wanted to see. But, that could be a delayed reaction from the past few days too... Let's just hope and pray that his pancreas starts healing soon so we can move on!

Even under the circumstances, I'm really excited about Christmas. Christmas has always been about my kids and family, and it still can be. That doesn't have to change just because we're having Christmas in a hospital, and it won't. I'll pick the girls up on Sunday, and they'll spend a week up here with us. It may not be the most fun they've ever had, but we'll all be together, and that's what matters. I'll have all three of my beautiful babies together, and I am more than grateful for that. I am thankful that the girls can be here with us, and I am thankful that Holden is still here to celebrate his first Christmas with us. We'll still celebrate this year, even here. :)

A few pictures...Bright eyes, reaching for the camera.

I can't dress him up in any Christmas outfits, and I couldn't find any baby Santa hats, so he got Christmas socks. Very exciting...
Sleeping with his teddy bear.
We call this his "bull face"... He scrunches up his nose and smiles. I love it. :)
Expecting something funny from Daddy.

Tuesday, December 21, 2010

Day 51

Not much has changed around here... Holden's lipase count is still exactly the same as it was yesterday. While it's good news that it's no longer rising, it sucks that it's not coming down either. He's still in a fair amount of pain, although it seems to be a little better than yesterday. I hope tomorrow looks a little brighter. I don't want his first Christmas to be a horrible one! Stupid pancreatitis. :( When we finally get out of here, I never want to hear the word pancreas again. Ever.

I went to the roof of the parking garage last night to check out the moon, and it was awesome! When I came back to our room, I noticed a lot of activity going on next door to us... Our neighbor is an eight year old little boy who has been waiting for a heart since July. He has been critical and on full support. The staff here isn't supposed to tell us anything, but they let it slip that he had gotten a heart offer! I was so excited for him, and for his family. I thought it was really cool that it had happened at Christmas, and on the night of the rare eclipse/solstice. I went to sleep feeling grateful that something good had finally happened on this floor. With so much doom and destruction, it's hard to remember sometimes that great miracles happen here too.

Well, when I asked about him this morning, they told me that the heart had been too big, and he couldn't get the transplant. My stomach dropped when I heard those words, and my heart just breaks for the family. To be thisclose, and not cross the finish line. I can't even imagine the heartbreak and disappointment they're feeling today. Please say an extra prayer for this family tonight. They can use the lift.

I also need to ask another favor. I have been reading more about organ donation lately, and I wanted to share a few facts. If you aren't a donor, please consider changing your mind. Give the gift of life this Christmas (or at least, plan to give that gift sometime in the future). It's free, it's simple, and it's the greatest gift you can give. It's the ultimate gift, as all Christians should know. :)

More than 100,000 men, women and children currently need life-saving organ transplants.

Every 10 minutes another name is added to the national organ transplant waiting list.

An average of 18 people die each day from the lack of available organs for transplant.

In 2009, there were 8,021 deceased organ donors and 6,610 living organ donors resulting in 28,465 organ transplants.

According to research, 98% of all adults have heard about organ donation and 86% have heard of tissue donation.

90% of Americans say they support donation, but only 30% know the essential steps to take to be a donor.

Visit or to learn more.

Day 50- Part 2

This has been a strange night… Maybe it’s the eclipse/solstice. Maybe it’s because I haven’t slept in forever. Maybe I’m getting that ICU psychosis everyone keeps warning me about. Whatever the cause, I’m feeling very sentimental and gooey.

I don’t post a lot about feelings on this blog… Mainly because we don’t have time for feelings around here. We’re in survival mode, just fighting to keep our heads above water. Our lives are like an episode of Grey’s Anatomy (only a lot less entertaining), and I don’t know how to speak like a normal non-hospital person anymore. The feelings are still there, just locked away tight most of the time. I have such a jumbled up mix of emotions on any given day… Hope, anger, shock, helplessness, fear, faith, joy, thankfulness, isolation, frustration- All there.

Everything suffers in the beginning of an experience like this… Relationships get harder to maintain, and there’s a certain distance between yourself and the rest of the “outside world”. Some friendships fade, and others become closer and stronger. Your marriage takes a hit as you both try to process the same experience filtered through two different minds, and struggle to stay close while the daily grief rips you apart. The financial hardships on top of the struggles add even more stress. I have moments where I am confused as to how I really feel… I try to fight off the sadness and allow the joy to have control. Some days I win. Some days I lose.

Being told that there is something wrong with your baby is overwhelming. It’s unbearably so when they tell you that they can’t fix him. I’m helpless as I realize that all of this is out of my control. There are times when I am so mad at the world I could scream. I’m paralyzed with fear sometimes that he may not make it. And if he does, he may never enjoy the same things as other little boys in the world, and he may never be the same happy kid I brought in here. He doesn’t understand why every visitor to his room brings a new painful experience with them. He doesn’t understand why I stand there and let it happen, or worse- hold him down while they do it. He doesn't have a lot to be happy about, but he still soldiers on.

And that's the lesson I try and take away from every day in here. Somewhere along the way, hope surfaces. I will never have the perfect, healthy little boy I dreamed of, but I have the gift of something bigger than that. I have a superhero. I have a little man who has endured more in his short life than most of us could ever imagine, and the strength of his will takes my breath away.

Holden’s heart may be broken, but these doctors saved his life. His surgery bought us time, and this journey made our path to transplant clear. It taught me about hope and faith. Real faith. It taught me what it means to appreciate. Days... Hours... Moments. I have faith that we will make it through this, and hope that we will make it through with grace. Hope that we will arrive exactly where God wants us to be, exactly when he wants us to be there. That requires patience as well, which has never been one of my virtues. But I have to remember, this isn’t about me. I’m just a ticket holder to the game.

Up until recently, we avoided all talk of future plans… It was just too painful to even think about how we would move on from this, if we even could. We are always getting through today. Just today. But now we may be at a point where we can stop worrying about just surviving, and turn our efforts to thriving… And he will thrive.

Hearts are mended. Hope is rewarded. Prayers are answered.

We are beyond thankful for his life and are reminded daily that he is a miracle! This experience has taught us to live deeper, appreciate more and open our hearts more than we could have ever learned in a lifetime. I am on-my-knees grateful. And if you happen to be on your knees too, we'd appreciate a prayer sent his way. :)

Monday, December 20, 2010

Day 50

We're going back and forth between a good/bad day today... He's been in a lot of pain with his pancreatitis last night and today, so he's been drugged up with morphine most of the day. It's still not taking it all away, so he's still not feeling very good. His lipase count was back up in the 700's this morning... He's still NPO, so we're not sure why it's rising again. It may be due to his feeds going into his stomach when he pulled the feeding tube out the other day, and it may be getting aggravated worse by the meds that have been going to his stomach as well. The good news is that we finally got the NG tube placed down in his intestines where it belongs, this afternoon, so hopefully those problems will correct themselves now. Once the pancreas is agitated though, and the enzymes become active again, it takes a while for things to level out. So he has a long road left ahead of him, just with his pancreas, poor baby. :( 

Heart-wise, he's still the same... Holding his own and waiting for a new heart. He's still doing great breathing on his own too... His sats have stayed pretty high the past 24 hours. If he wasn't so miserable, this might have been a good week... It's so heartbreaking to see him like this!

I took a bunch of pictures yesterday afternoon and evening, when he was still feeling pretty good... I'm hoping we can get back to this tomorrow!!

This is what guilty looks like... He managed to tangle himself up in the lines. He isn't supposed to mess with those IV's at all, and he knows it too.
 Our sweet friend Lindsay sent some new books along with his Bumbo seat... This kid loves to read!

 We LOVE the Bumbo! I've been keeping him entertained with all of his new Christmas toys. :)
 I swear he's happier than he looks here... He loves his new cars.
 Granny B brought some more stuff for him too... His first stocking...
 And presents under his tree. :)

Sunday, December 19, 2010

Day 49

I am constantly surprised and amazed by the generosity and kindness of our friends, family, and people who know us through them... We have been incredibly blessed by all of them! Our friends Jason, Amy, Tracy and Rachel came up here last night, and they brought a mountain of Christmas presents with them. There were goodies for me and Trent, some from people we haven't even met, and they were kind enough to save our gifts from the White Elephant party we weren't able to attend. (I was ordered to put pictures of those gifts up on the blog, but I haven't gotten around to taking them yet... Sorry, Amy.) So many people sent gifts for Holden as well, and again we were amazed by how many people remembered him this Christmas... Thank you all!!! I'll take pictures as he plays with each of them, so those of you who sent gifts can see him enjoying them. :) The only thing he's gotten so far is the Grinch, and I think he was more terrified than impressed. I'm sure he'll eventually love it though!

He's made some progress today, although we're still having issues managing his pain. We switched him to the heated oxygen nasal canula this morning and got him off of the Vapotherm... So far, he's been a champ! His sats have stayed in the high 90's, even when he's crying and throwing up. He just keeps surprising me by surpassing every goal set for him... He's such a little superhero!

We're still having trouble getting the feeding tube down far enough in his intestines. Instead of migrating where it needs to go, it's curling up in his stomach. He'll have to go down and have it placed in the lab tomorrow. Until then, he's off his feeds, and his PO meds are going straight into his stomach. He's still throwing up, though not as much volume as he was previously, and he still seems to be in a lot of pain. His lipase count was in the 600's this morning, up from the 400's yesterday. His poor little tummy... If he didn't need his pancreas, I'd tell them to just take the stupid thing out so he can feel better again!

So that's pretty much the way it goes in here... Big steps forward in one area, and big steps backward in another. He's doing so well from a respiratory standpoint, but the pain from his pancreatitis keeps him from feeling good with his progress... That pain prevents us from holding him and playing with him like we'd like to as well. :( I'm praying hard that he starts feeling better this week... He has a few Christmas presents to unwrap!

Playing with the Grinch... Does he look scared?? :)

Saturday, December 18, 2010

Day 48

This poor baby has had a rough start to his day... Although it's still a better day than what we've had earlier in the week! He's still doing really well on the Vapotherm, and we've been able to wean him down to 25% oxygen and only 6 LPM... I know some of you have no idea what I'm talking about, but trust me, it's good news. :) If he continues to progress this well, we might be able to get him off the Vapotherm and on regular oxygen soon. His lipase count was also down this morning, in the 400's. I'm trying not to get too excited, since pancreatitis is fickle and can go up and down in a matter of hours, but I'm really loving watching the numbers go down every day! Still praying for that downward trend to continue...

He's had a series of little mishaps throughout the day that are making his life miserable today... He's been in pain since about 2am last night, and we don't really know why. I think it's his stomach, but since he can't tell us, all we can do is guess... The doctors said even with his numbers going down, the pain from pancreatitis can last for weeks after the numbers are normal, and it will come and go with no warning or pattern. That just really sucks for my little man... We ended up giving him morphine this morning, because he was so pathetic crying and whimpering. That's the first dose of morphine he's required all weekend. He's a lot tougher than most adults I know, that's for sure!

It's a good thing we gave him the drugs when we did, because he pulled out his NG tube, and we had to get that back down. It's a more involved process getting it down into the intestines vs. the stomach, and it takes a few attempts and adjustments. To say babies don't like the process is putting it mildly... In the middle of that, we discovered his new ART line wasn't working, so we had to cut the sutures and pull that out too. I had the choice job of holding him down for all of this while he cried and begged to be let up. My heart is still a little broken. :( The tube is still not down where it needs to be, but he's taking a little break and napping right now. We'll deal with the details later... 

The response we got regarding the Bumbo seat was amazing, thank you all! Our sweet friend Lindsay offered to give us hers, which even comes with a tray (for his books, she says :)... Thank you Lindsay!

And a few pictures from our week... I'm ready to get a few of him out of his bed! Maybe soon. :)

The start of our week, with the dreaded tube back in the picture.
 His club hand- the result of a badly placed IV, which didn't last more than a day... (To clarify, the IV was fine, it was just a poor choice to put it in his hand once he's off sedation.)
 NOT happy about his bath this time.
 He loves to sit up and play with his toys, but he's so weak he only lasts for a couple of minutes.
 Tuckered out after the morning's mishaps...
 Even in a hospital bed, he still manages to jumble himself all over the place.