The First Halloween

Let me begin by saying that it took all my resolve not to put Mason's costume on when he woke up at 5 on Halloween morning. I was so excited! The Shasserres and Collinses came over to hang out, and we waited until they arrived to get him dressed up. Chris was ready with the camera as I put his top and hood on because we were fairly certain Mason wouldn't stay in it long (the dress rehearsal had been traumatic for him). Surprisingly, he did really well, and we were even able to safely sit him on the front steps and get his picture because the costume was so padded that it stabilized him! Haha!

Sorry for the Lapse!

I know it's been a long time since I updated the blog (I've been reminded of this NUMEROUS times), but, in my defense, I've had a couple of things to worry about since October 17th.

Briefly, here's how things went after that. Mason seemed to do a turn-around after they put in the 4th chest tube to try to drain fluids away from his lungs, making it much easier for him to breathe and for his heart to pump. I had a really hard time when they did that procedure because it was the first time that we had to leave Mason alone; I had been adamant that any time I had to leave him, some family member would be with him. Chris made me go across the street to get lunch with him, and that was the first time I had seen daylight since Tuesday afternoon. It was shocking to see that life was going on as normal, ignorant of Mason's struggle in the PCICU. I know that sounds ridiculous, but it was really difficult for me to maintain a sense of reality holed up in his room with room almost 24 hours a day. The chest tube immediately drained almost 2 ounces of fluid, and his stats started to creep up, and from that point on we saw many more gains than losses. He was fighting to breathe on his own, despite the ventilator, and he wiggled in earnest against the paralytic drugs. At that point the toughest times for me were when he coughed. I can't even explain why, but it was horrifying to see.

By Monday morning all the chest tubes had been removed, and Mason had come off the ventilator. We were just waiting for a room to open up on the floor, and Mason stayed awake for long periods, so we continued to read his books and talk to him and mark off the hours until he was well enough to go home. A couple of times a resident or doctor would pop in just to say "hi," even though they weren't assigned to him...they had just heard how cute he was and how miraculously he was recovering all of a sudden. On Tuesday afternoon, a few of them came in, and Mason smiled! They all cheered, and the resident said, "After all the junk that has happened today, THAT just made my day!" I can't express how helpful it was to know that everyone in the PCICU was behind Mason, celebrating every milestone along with us. We were truly blessed to have such gifted people caring for our son.

Having said that, I was not prepared AT ALL for the difference between the floor and the PCICU, so I really struggled once we were moved out of the PCICU on Tuesday night. I won't go into too many details, but it was a terrible experience for the most part, and I never thought I'd have any complaints about Vanderbilt. Mason was just another patient up there on the floor, and they were not too forthcoming with information. I couldn't sleep at night because people kept coming in every 15-30 minutes during the night, and I had to do all the normal mommy things on top of that (diapering, feeding, cleaning, etc.), so I was trying to function on pretty much no sleep. It was terrible, and I couldn't have done it without my mom's being there during the day. On Wednesday Chris had gone back to work. By Thursday afternoon, I was at the end of what I could handle, so I called Chris and asked him to stay with us on Friday. He did, and we ended up getting to go home Friday evening.

I've never been so excited to see home! We were both so scared to take him home, though. We had spent the last 10 days watching his heart and oxygen monitors obsessively, so it was terrifying not to have that reassurance that he was okay. We've been home now almost 3 weeks, and I'm finally relaxing a little. The first two weeks were exhausting because Mason couldn't do the things he was doing before (like playing in his jumparoo or having tummy time on his play mat)that allowed me to get things done. I held him almost all day, and even though there is nothing I love more than being with him, so many days of having to wait until Chris home to do even the simplest task (like showering) eventually wore on me.

Thankfully, Mason is gradually getting back to normal, so the clinginess he showed after surgery is improving. On the other hand, though, he's going through the separation anxiety stage way early; he decided about a week ago that he only likes his parents. Even Mom, who kept him every day before the surgery and stayed by his side during the whole hospital stay, made him scream every time she tried to hold him. She had gone home for almost a week, and it took her two days when she returned last week to regain his trust. I hope we grow out of this fast. We were really worried about how much he would regress developmentally because Dr. Kaushik had warned us that most kids lose some milestones after surgery. So far, though, we haven't noticed anything other than the decrease in independence. He's the smiley Mason we all remember, he's up to about 5 ounces at every feeding now (getting even 3 was a fight for a few weeks), and he talks all the time. Every once in a while he'll even try to imitate sounds. Last weekend he started working on holding his own bottle while he eats, and he seems to have mastered that skill rather quickly. He held it through a whole feeding this morning! Sigh...I think that's it. You're all up to date now.

The Uphill Climb

Last night Mason fought like a champ and made strides. Dr. Smith, the attending, had set a goal for him to be negative 300 on fluids during the night, and he was at 375 by the morning shift change! He kept up his oxygen sats (he even hit 100% at one point!) and a steady heartbeat in his target range with no arrhythmia. Fewer doctors and techs came in because he was doing so well, so I actually got a little more sleep, although I was awakened at one point by the respiratory therapist and a nurse, who were debating whether or not Mason's stuffed llama would really be classified as an alpaca. Not sure what the conclusion was, but it hardly seemed like the most pressing question of the night.

Mason's new nurse came on at 7 the next morning, replacing Nicole and Jessica, the night shift. Alison, Mason's day shift nurse from Wednesday until Friday, was not on, and I was surprised to see that Mason had been assigned a male nurse. He seemed quiet at first, so I was concerned that he wasn't going to be as outgoing or nurturing as what we've been used to, but Andy turned out to be phenomenal. He had a great sense of humor and spent a lot of his down time (Mason gave him an easy day!) talking to me and Chris about procedures and medicines. I'm glad we'll be seeing him again tomorrow.

Today we saw a lot of encouraging progress. Mason continued to remain stable and to flush fluids, so he looks more and more like my baby each hour as the swelling subsides--in fact, we saw his neck for the first time in 3 days. A pediatric surgeon came and removed the three original chest tubes, and Mason did great with that procedure, and later in the afternoon he was finally weaned off the nitric oxide that was helping his oxygen sats. He's staying awake for longer periods and moving more vigorously, so these are really positive signs!

Also, Chris and I got into the Ronald McDonald House at long last, so that was another relief. Mom has been sleeping on a pull-out chair in the waiting room, so now she and Chris have somewhere comfortable to sleep. Chris took Mom over there this evening, and they got settled in and ate dinner there, and Mom went straight to bed (she's tough, but I know this is all as exhausting for her as for me and Chris). Chris has been staying with Mason until around midnight each night and then going to the sleep room to pass out, so he'll do the same and just head over to the RMH now. I stay in Mason's room and then leave to go shower and eat some breakfast when Chris comes back to relieve me around 7.

This has all been more than I can ever describe, but Chris and I are starting to breathe easier now. I told Chris on Wednesday that I hope this is the toughest thing we ever have to endure with Mason, and I pray that the worst is already behind us.

So...we're anticipating another good night and more milestones tomorrow: losing the ventilator and pooping (yes, that would be a MAJOR excitement for us these days!). Miriam says lots of Lutherans are praying for our boy, so I'm certain he'll meet all his goals again. Plus, Miriam's watching a lot of Dr. Quinn, Medicine Woman these days just in case she needs to step in and offer Mason's doctors some suggestions to speed things up. But between the Lutherans and the Baptists (and a Catholic or two), I think we're in good shape!

48 Hours Post-Surgery

Today is Friday, and it's been more than 48 hours since our baby boy came out of surgery. I'm too exhausted to rehash everything that has happened since then, but suffice it to say that it's been up and down, and I pray that we're finally at the more-up-than-down point, maybe beginning the long uphill climb. Mason ended up needing the patch instead of the repair, so he'll need to have this patch replaced someday when he outgrows it (hopefully after puberty), but Chris and I are encouraged because a new, less invasive procedure is in the trial stage and will be commonplace by next year. The new procedure allows doctors to go in and "upgrade" an old patch without open heart surgery (they go in through the femoral artery). Dr. Kaushik says they are doing that on adults now and should be doing it for babies by 2010. So who knows what technology will allow them to do by the time Mason needs a new patch?

The first 24 hours were especially rough, and every one of the more than 2 dozen doctors he's seen in the Pediatric Cardiac Intensive Care Unit at Vanderbilt seemed to have a different idea of what he needed. I understand that there is no single magical treatment, but a little more consensus would be comforting to Chris and me. Just after one doctor came in and said things were going well, another would pop in and say that things weren't progressing well. Admittedly, today has been better, and everyone seems to be more on the same page.

All in all, Mason's nurses have been awesome, and we really appreciate the skills of his surgeon, Dr. Christian. Surprisingly, Mason's incision is the least disturbing to me. The breathing tube and tube in his nose are a lot harder to see. Even though we saw pictures of other babies who've had this procedure, nothing prepares you for the sight of your own tiny son hooked up to ventilators and a pacemaker and all kinds of monitors. That first time we saw him after surgery was heartbreaking, and I only say that because there are no words to adequately describe how I felt in that moment. I'm not going to post pictures because they're pretty raw, and Chris has decided that he doesn't want people to see baby Mason like this.

I am so thankful that my mom and sisters were there for me. Having Mary there to talk to was especially comforting; she can understand some of what Chris and I are going through because she and Jason have been through the NICU and PICU with Jase back home. We were talking about how we felt when they took Mason and Jase away as babies to be transported to the NICU, and Mary said what I said to Chris on that day: "Nobody should ever have to leave the hospital without their baby." And no parents should ever have to see their baby the way Chris and I are seeing Mason now. I know Chris would tell you that handing him to the anesthesiologist who took him off to the operating room on Wednesday was the hardest thing he ever had to do.

So here we are now, though. I'm sitting in the chair just a few feet from his bed, which is crowded with stuffed animals that people have bought him. The end of his crib bears a sign decorated with his name (Mary made one for each day, so we change it every morning), and I surrounded that with pictures of him with Chris and me. One of the stuffed frogs wears a whistle around his neck, a gift from Jase to his cousin--just in case Mason needs to call for help. Haha! Mary also made a big poster that says "We Love Mason" and has all the names of his grandparents, aunts, uncles, and cousins (and Pastor Tony, who drove all the way from Maryville to sit with us through the surgery). I laughed and told her that nobody would believe that was just his immediate family! I hung that poster on the glass door to his room and put more pictures around that, as well as a sign Haylee made for him while she was visiting and one that my 6th period class made for him. Mary also tied a giant dump truck balloon to the front of his crib; Jase would be so proud of his mom's good taste. Aunt Mary read "Llama Llama Red Pajama" to him, and it became a joke because the scared llama in the book bears a remarkable resemblance to our big-eyed boy. Nanny found a llama in the gift shop and bought it for him. So cute!

So all day we talk to him and massage his arms and legs and wait for the precious moments when he opens his eyes (which is amazing because the attending doctor said that Chris or I would be asleep if we were on as much medication as he is). He opened his eyes this morning and turned them toward me when I called his name, so I know he's aware that we're here. Today he has been stable, and they put in a feeding tube and started giving him a little milk so that his bowels can get back on track. It was hard to see another tube go in, but we knew that meant progress. They also put in another chest tube to drain excess fluid from around his right lung, hoping that that would improve his oxygen saturation and make it easier to wean him off the nitric oxide and oxygen they've been giving him. Already we're seeing some improvement. If he keeps this up, his drains may come out tomorrow and (hopefully) the breathing tube will follow on Sunday.

Most amazingly of all, he's trying to smile! How he can smile through all the sedation is beyond me. I don't know which is harder to believe...that he is able to smile or that he even wants to! We are so blessed to be Mason's mom and dad! What a miraculous kid to be smiling around a breathing tube, under massive sedation, and with tubes and wires coming out everywhere. He constantly amazes me.

Thanks to everyone who has sent good wishes and prayers. I can't believe how many people across the country are praying for him and how many people have told me that they've put him on their churches' prayer lists. Mason is definitely being lifted up! That means so much to us and makes this whole ordeal easier to tolerate.

The Big Day Approaches

Last Wednesday we went for Mason's cardiology appointment, and it went a little roughly for him. He tolerated the echo for about 15 minutes, and then he let us know that he was done and we should be, too. After that, the poor nurse didn't stand a chance of getting his oxygen saturation levels or finishing the EKG. He screamed until Chris and I were both so tense that we could have snapped. She did manage to weigh and measure him, though, and we were really excited to find out that he weighed 12 pounds and 9 ounces, just one ounce shy of a 3-pound gain since last month! (I weighed him last night, and he weighed around 13 and a half pounds, so we're making HUGE progress now.)

Eventually Dr. Kaushik was able to get some readings from the oxygen monitor. It got up to 92, but it was in the 70s a lot of the time because he was so upset. It's taking him longer to recover now when he has a crying spell, so Dr. Kaushik said this was the perfect time for surgery. She stayed with us for a long time, answering questions. I had asked her if he would face any developmental setbacks after surgery, and Dr. Kaushik told us that they do believe there's some neurological impact from being on bypass, so Mason might have some learning difficulties later in life. She shared that she had undergone bypass surgery when she was 10 and that two of her best friends were tet babies like Mason, and all of them are cardiologists, so that made me feel a lot better. I took that as a promise that Mason will be a cardiologist someday. Haha!

Two days later we got the call from the surgeon's (Dr. Christian) office, and we scheduled surgery for next Wednesday, October 14th. So now we're trying to get everything set up, including direct blood donation, for the big day. Dr. Christian's manager turned in all the paperwork for Ronald McDonald house, so we should find out pretty soon if we'll get to stay there. Mason will be in the PICU for 24-48 hours, and then he'll move out to the floor if everything is going well. Dr. Kaushik told us that he would be at Vanderbilt for at least a week to two weeks, so we're preparing for a long time away from home.

I'm getting more nervous as the 14th approaches, and I'm still having a hard time watching Mason undergo all the little tests and pricks. I had a breakdown on Saturday after we waited for 90 minutes so that Mason could have his blood typed; it was a miserable experience. It seems so unfair that he has already been through way more medical stuff than lots of people will ever endure, but I know...Mom always reminded me that life isn't fair. Besides, I try to focus on all the good and stay positive because I know he's in the best hands. Now all we can do is wait and keep praying!

New Developments

I forgot to mention that Mason has 2 teeth now! I came home Friday, and he was sitting on my lap, smiling and laughing, and I spied two little white spots on his bottom gum. Two at once! Haylee was apparently the first to spot them earlier that day, but Mom convinced her that she was wrong. Haha!

Few have seen these new teeth because Mason closely guards them...he sticks his tongue over them if you pull down his lower lip. You can definitely feel them, though. He may look like Chris, but he's taking after me developmentally. :) I got my first tooth at 3 and a half months too.

Mason Sits in His High Chair!

Mason sat at the dinner table in his high chair for the first time a couple of weeks ago. I think that was my first meal without a baby on my lap since June 15th! He didn't last long, but it was a step in the right direction.