Twins, really?!

Ever since AD was born, people have been telling us that she and G are practically twins. I have to admit, they look A LOT alike. At first, it was funny. Now? I'm not laughing anymore. The similarities are not only uncanny, they're making me nervous. I've already posted about AD's heart murmur; she has an echo-cardiogram scheduled for Monday, November 25. We're still hopeful that what the nurse has told us is true and that AD's murmur is benign. TDH Man and I are trying to ignore the repeated phrases that we heard when G had his evaluations: "Oh, I'm sure it's nothing... it sounds benign!" Instead, we're trying to focus on the odds: a congenital heart defect is pretty rare and to have TWO kids with it? Well, that would just be downright crazy. Right?

And then this past Monday, I took G and AD for kidney ultrasounds. We already knew that G has a duplex collection system on his right kidney, probably related to his microtia and atresia, since the kidneys and ears develop at the same time in utero. A few weeks ago, AD had a terribly high fever, spiking at 105 for a time. The pediatrician's office did a catheterized urine catch and the results came back as having a mild UTI. I have my doubts about that because her fever broke without ever taking any antibiotics and the fever resolved itself. Still, it was scary and because she's so young, the doctor wanted her kidneys evaluated to rule out any physical anomaly. Wouldn't you know it, they found that the tubes in her right kidney are split, so she has two where only one should be. We aren't sure what this means for her yet, but the next round of tests will be on Friday morning. They'll inject her bladder with contrasting dye to see if she has a reflux issue in her kidneys and once we know that result, we'll figure out the next step.

But, of course, that's not all. Here we were, worrying about our AD when G decided he didn't want to be left out of the testing-fun. You know it's never a good sign when, after the ultrasound tech leaves to check to see if she 'got enough good pictures', she brings the doctor on-duty back into the room with her. I have to say, my heart sunk a bit when she walked into the room. She gave me a brief run-down of both results, but I guess I was focused so much on AD that I didn't really understand what she was saying about G. Turns out his kidney is swelling and it's probably caused by a blockage somewhere. So now he has to go for more tests and yet another doctor.  Are you keeping track of how many specialists see G now?  Here!  Let me list them for you!

Maxillofacial surgeon - for Hemifacial microsomia
Facial Plastic and Reconstructive Surgeon - for Microtia
Cardiac Surgeon - for an Atrioventricular Septal Defect and cleft valve
Otologist - for Atresia and hearing loss
Audiologist - for hearing loss
Physical therapist - for gross motor delays
Occupational therapist - for fine motor delays
Hearing therapist - for severe deafness in right ear
Urologist - for Hydronephrosis

No wonder I'm dizzy...

Perspective

I have a day to myself, oh, yes I do. E had a dental cleaning this morning, so I took the opportunity to take a day off and sit at home. Normally, I'd use the time to catch up on housecleaning and call it a day. But I promised myself that I'd do some things for ME this time around. And so, here I am, writing a long-due blog post. What else have I done today for me? Yes, laundry and dishes, but I also cut my nails. That sounds like such a silly, small thing, doesn't it? It's all about perspective.

I've realized more and more lately that everything in my world is about perspective. There are some times when I'm really proud to be able to say I have a decent perspective on a situation and sometimes, I miss the mark completely. TDH Man almost always has a perspective that I envy. He's a person that's open to what life throws at him; I can only think of one time when something threw him for a real loop and it's not something I'd care to have happen again. I struggle with keeping things in perspective, especially when it comes to the kids. G just turned three and he is quite the handful. I was blessed to have my first boy be relatively easy. Perhaps God made him that way because everything else in my life at the time he was born was complete chaos. G, on the other hand, has been a handful since the second he was conceived. I'm trying to learn to embrace that, to watch him as he grows and to revel in the gifts that God has given him even when they don't jive with what I'd like them to be. He's strong-willed? Perhaps that's God's gift to him to be able to persevere through the medical issues that are ahead of him (or even those that are already behind him). He's not affectionate? Perhaps that's God's gift to him so that he won't get his feelings hurt by others when they realize he has physical differences and when he does get to be close to someone, he's certain they love him for him. I don't know, but it's got to be in the perspective.

AD had her nine-month appointment yesterday and the pediatrician found a heart murmur. I smiled. Yes, you read that right: I smiled. Not because I'm happy that he found something that could potentially cause us to have to walk the same path we've walked with G, but because I know that this is part of God's plan. Perhaps AD has holes in her heart, just as G did and God put her in our family because her parents and brother have already gone down that path in life. Perspective.

So now, while I pray that our little girl doesn't have to go through open-heart surgery, I am grateful that we've done it before and we know what's ahead if that's what it comes to for her.

Oh, so close... our boy the hospital yo-yo

Saturday morning, August 4, I woke up around 5:00am to G making some strained crying noises. I rushed into his room and could see straight away that something was just not right with him. I felt his head and realized that he was just burning up. I took his temperature and it was 103.2 degrees. For the fourth time in one week, my heart plummeted to my stomach.

The nurses had drilled into our heads that any fever was extremely dangerous for G and could signal an infection in his heart. I rushed to the phone to call the nurse line at Children's Hospital Boston and after a few phone calls back and forth, we were told to head to the local Children's Hospital and have him evaluated immediately. TDH Man and I packed up our feverish, lethargic little man and headed back to the hospital.

Our house is oddly enough about equidistant from two children's hospitals and so when the nurse told us to get to the ER, I asked her which one we should go to. She said "whichever is closest", and so we headed to that one, which wasn't Children's Hospital Boston. Let me just say that was a mistake on our part. We get to the hospital and because G is a post-surgical cardiac patient, they triage him fairly quickly and get us settled in a room. Because he's burning up, they start an IV line again and I can tell he's not feeling well because he basically just lets them set him up. They brace his arm and he lies on my lap, alternatively sweating, napping and cuddling with me. This is not our boy at all.

They call the cardiologist on duty who evaluates him, asks us a bunch of questions and bascially tells us that they think he's caught a virus. Right away, something doesn't sit well with me and I'm not comfortable being there. G has had no other symptoms, he's just gone through major surgery and we've been educated on the dangers of a fever and all they can say is that he's gotten a virus? No, not flying. The doctor then tells us that it's probably best to admit him for observation and as soon as he leaves the room, I turn to TDH Man and say "If they want to admit G, can we refuse and head back to Children's Hospital Boston?" Without blinking an eye, my wonderful husband says "Of course" even though it means that he's going to have to drive 40 minutes back to our house to get clothes for all three of us and then another hour to get to the hospital, he doesn't blink an eye. You may not know this, but I am in love with my husband and this is just one more reason why.

After discussing it with the Boston Pedi Cardio unit, the cardiologist on-duty comes back to tell us that they will indeed need to admit G overnight at the very least. That's when I tell them that we want him moved to Boston and not admitted to that hospital. I don't tell them that it's partially because I'm grossed out by the peeling paint in the exam room we're sitting in, or that it's because of the rather large, possibly moving hairballs under the guerney that G and I are lying on, or that it's because of the three empty hand-sanitizing stations (seriously, people, you work in a hospital and you can't fill them?!), but instead I tell them that I want a continuity of care that I don't think they can accomplish for a cardiac patient.  Yes, I put on my 'if you can't say something nice' face even when my post-operative child is burning up with a fever and I'm panicking every which way to Sunday.

So, because they're already given G and IV and fluids, they aren't allowed to simply discharge him and let us drive him back to CH Boston. Oh, no.  We get to now take a ride in an ambulance!  Fast forward a few hours later, and I'm sitting in the front seat of an ambulance while TDH Man is driving home in the opposite direction to repack bags for all of us and poor G is screaming "Momma!" as every single bump jars the ambulance and jostles the two EMTs and the cardiac doctor who's been charged to watch over all the machines to which G is now reattached. At least now I can look back and say this was the peak of our entire ordeal.

We finally get back to CH Boston and lo-and-behold, we get checked back into the same exact room that G just left less than 24 hours before. They hook him up to some antibiotics, more fluids and retape his IV. Then we wait while they draw more blood, run more tests and basically try to ensure that he doesn't have a pericardial infection brewing. TDH Man finally meets up with us in the hospital room and tells me that he happened to just run into Dr. Emani, G's heart surgeon, on the street and he says that he's heard G is back in the hospital. He then tells my husband his theory of why G has the fever and it turns out that he's probably had a reaction to the heart-lung machine and he's suffering from atelectasis. Lucky for us, G's fever breaks and just 24 hours later, he's feeling much, much better.


Just keeping him busy until discharge, again.

In the end, we have no real idea of what caused his fever, but I'm happy to report, it's been a year and our boy is happy, healthy, crazy and amazing. He's overcome obstacles we had no idea were ahead of him and we've been so unbelieveably blessed to be this boy's parents.

I joke with TDH Man that God put three holes in G's heart because he didn't have the one hole in his ear and his holey-heart was one way to prepare us for the surgeries ahead. We don't know His plan, but I like to think that it was all preparation for something amazing for our boy.

Phew! It's time to go home!

 And don't worry. I'll keep y'all posted.

A hole in the heart, healed.

The final post in our journey to have G's heart and his AVSD and valve repaired.  I'll prewarn you, there are photos involved, so if you're squeamish about seeing medical photos, avert your eyes.

Around 11:30am, literally just as we're done praying, our surgical coordinator comes in to tell us that G is out of surgery and the doctor will be down to give us the update. My heart leaps; our boy made it.  He really made it. And now the recovery began...

The surgeon told us that they found not only one hole, but three holes in G's heart. Dr. Emani was able to repair all three holes, patching the largest hole (which was bigger than they expected at about 22mm) with tissue from G's pericardial sac, and stitching the other two holes closed. The surgeon also repaired the cleft valve and was optimistic that G wouldn't need surgery again for any of these issues. Once they had him cleaned up, we were brought to his room and I about cried with joy to see our boy.


Our first view of our little man, in the CICU recovery unit

Believe it or not, my first reaction was that he looked so GOOD!  They had prepared us for the worst, but when we saw him, I was amazed that other than looking swollen, he looked as normal as could be. Well, normal with tons of wires, tubes, meds, beeping and all that. Honestly, the CICU staff had done an amazing job of cleaning him up and getting him comfortable. I was able to kiss his little head and rub his little leg to let him know we were there.



He was so tall that they had to put him in a regular bed instead of a crib!

We left to tell our family the great news and let my sister and my Dad in to see G before they left for the night. He was still sedated at this point, but we were estatic and just praised God for His work.



Wires, tubes and all, he looked so GOOD to us!

So, after a few hours, the nurses decided that he was doing well enough to start removing some of the tubes and to encourage him to breath on his own. At this point, his heart was beating on it's own, but they needed to make sure that everything was going to progress according to their plan, so they administered some drugs to start bringing him out of sedation. Normally, the nurses said, the meds take about an hour to really kick in. G, on the other hand, had his own time table. About 20 minutes after the meds were administered, he started to pull at his breathing tube and had to be restrained. The nurses kicked into high gear and TDH Man and I just stood back, watching five nurses hold our little boy down while he struggled and tried to scream. And this is the second time my heart wanted to leap from my chest. The CICU Resident held G's head and looked at TDH Man and me and repeated "He's not going to remember any of this... this is all normal. He's doing great." Meanwhile, the other four nurses ran around G's bed, performing an obviously well-coordinated ballet of procedures to get our boy breathing on his own. TDH Man and I just stood there, at a complete loss, praying with each second that he would breathe, just breathe. After what seemed an eternity, they were able to stablize him and he opened his eyes and this time it was obvious that he was seeing us and was out of the sedation. His oxygen levels weren't great and so they kept him on oxygen for a while, so he wasn't able to talk fully. He kept crying through the mask and sometimes, I'll admit that I am still haunted by the sound of his muffled voice screaming for me.

So close to breathing on his own

When they finally were able to get him stable and his oxygen levels at a decent rate, the mask came off. At this point, TDH Man and I were working shifts to combat the exhaustion of being up 24 hours. Did I forget to mention that I was also 14 weeks pregnant with our third child?  Oh yeah, there was that too. TDH Man was there when they finally took his mask off and were able to remove one of his central lines. His first words?

"I watch Elmo now?"

Hanging with Hopper, loving the fact that he has a TV in bed all to himself

We spent the next 24 hours keeping him comfortable, getting him to sleep as much as possible and trying to get him to drink a bit of water. With every passing hour, he looked a little better and some new wire or tube was removed.

Hopper keeping watch over G

 A little over one day later, our little man, 22 months old, was able to move out of the Cardiac Intensive Care Unit and onto the recovery floor. And here we took turns watching Elmo, Elmo and more Elmo.

One day after open-heart surgery.





Swollen face, but drinking water and feeling much better

The next two days went by slowly and we made about a million laps around the hospital, keeping our healing boy entertained however possible. More tests were run to make sure that the surgery had fixed G's AVSD and valve and make sure that he was drinking and eating as he should be. TDH Man and I slept when possible, including a night where TDH man slept in the playroom on the recovery floor while the creepy dolls watched over him. I slept by G's side because the fold-out bed wasn't long enough for my 6' 9" husband. 

 



When the nurses started talking about letting G go home only 48 hours after surgery, we were eager to get him off all his meds and prepped to go home. His surgery had been on Tuesday morning and by Friday morning, the attending doctors gave us the go ahead to have him discharged. We were so happy and so ready to leave. He had one stitch and surgical glue to close the wound. Everything looked great (literally!) and we spend the next few hours getting discharge instructions and signing more paperwork to get our boy released. By 2:00pm on Friday, August 3, G was discharged from Children's Hospital and we were on our way home, healed heart and all... well, almost.




His new badge of courage
 

We arrived at home late Friday afternoon. I can't even describe how relieved I felt to just have our little boy in his own bed. We had been told that the next week was crucial to his recovery and that if he got even the slightest fever, we were to call the hospital immediately. G was acting completely normal and you honestly wouldn't ever realized that just three days before, he's been in the intensive care unit, recovering from open-heart surgery. He even ate chicken nuggets for dinner on the way home! That night, we gave him his pain medications and put him to bed, safe and sound.

 

But G's body had other plans...

No matter how many ways you prep, you're never ready.

Today is the day: one year.  It's been one year since they repaired G's heart and closed the hole. I'm sort of in shock, but I am so, so thankful for all that's happened and so I want to make sure I document what I can remember of what happened. So here's G's story, part two (with pictures!).

Once we had heard that G was going to have surgery, we spent the next few months planning, researching and basically trying not to worry. His surgery was originally scheduled for June 29, so in the meantime, he went to quite a few doctor's appointments to prepare for the surgery. This included a sedated echocardiogram on June 7, 2012 so that they could get a very good idea of exactly what they were looking for and repairing and a variety of other tests. The sedated ECG was quite a feat in itself, but we had an amazing nurse taking care of us at the Cardiology Unit at Children's Hospital Boston. She let us know everything that could possibly happen, including the fact that he may or may not spit up right after they administered the meds to sedate him. Sure enough, he passes out in my arms and as we're walking to the exam room, he starts choking and I panic. We rushed him to the exam room and the nurse adeptly rolls him onto his side and clears out his airway. This is only the first of many times in the next few months that my heart skips a beat.

Once all the tests are completed, we just sit and wait for the date of his surgery to arrive. And, wouldn't you know it, the time turns out to be crazy, crazy, crazy. Just a few days before he's supposed to be admitted, G comes down with a mysterious rash and fever. I spend the next few days talking to the cardiology nurses in Boston, debating on whether or not it's safe for him to undergo surgery and in the end, they decide to push him off until the end of July. To add to the chaos, we had put out a call for people to donate blood for G's surgery. Because he was going to need to use a heart-lung machine, we requested donations to prime the machine with known blood instead of blood from the general public. People were gracious enough to line up, some even driving an HOUR just to donate, only to end up not being able to use the blood because his surgery was delayed. At this point, I just sit and cry. I want this over and done, with our little boy safe and sound on the other side. I pray that God knows what He's doing and to just keep our boy safe.

When July 30 finally rolls around, we spend the day at the hospital undergoing pre-op surgery tests. It's a crazy, hectic day but G does great. We're put into the Cardio surgery rotation which means we end up seeing the same two other children and their parents all day. There is one couple, a young husband and wife, with a baby girl younger than G and another couple with a boy who we later find out is just over six years old. There is some solace in the fact that we're not alone and I find that I want to talk to these people, ask them their story and compare notes to assure each other that we're all going to have healthy, happy kids after this. At the end of the day, we take G back to my Gram's house and prepare for the next day.

The night before surgery, all smiles!

On the morning of July 31, 2012, we quickly dress and get to the hospital before G can realize he's hungry. He hasn't been allowed any food or liquid since midnight and luckily, he's not a big breakfast eater so we're able to put him off eating. TDH Man and I check G into the surgical unit and the waiting begins. Elmo is on...

Elmo likes music, G likes Elmo...

Once we fill out all the paperwork, they call his name and we're escorted to the surgical unit with the two other couples that attended the pre-op round with us and their kids. We get G settled in his bed and he's quickly turning around and showing his 22-month old opinions. Numerous doctors stop by and introduce themselves, ask questions and start to administer the sedation meds to get him to relax before they put in his IV. I start to shake. I realize that they're going to open my little boy's chest and I can't stop the tears. He takes his meds and they try to get him to lie down, but all he wants to do is play with the heart monitor and soon he's sliding into a giddy state. He still won't lie down, so the anesthesiologist picks him up and carries him into the surgery area, but as soon as he can't see us, he starts to cry and I lose it. TDH Man hugs me and reminds me that God is watching over our boy and he'll be safe. I repeat it to myself until I'm able to calm down and we're escorted to the parent waiting area.

At this point, I'm just going through the motions.  We're paired up with a sort of surgical informant, someone on the hospital staff that periodically checks into the surgery room to find out how things are going. She tells us the surgeon is on his way down to give us a briefing on what's going to happen. The surgeon, Dr. Emani, is young, confident and takes the time to explain every piece of the surgery. It's obvious to us that Children's Hosptial Boston knows what they're doing and although it's also obvious that they do this every day, they never once make us feel like our boy is just another cog in their daily machine. After he explains everything, we head back to the waiting area and my Dad arrives to sit with us. While we're waiting, I notice the father of the boy that was with us on our pre-op rounds and I realize his wife isn't with him. Turns out she caught some terrible stomach flu, so while her little boy is getting his heart repaired, she's alone in a hotel room, sick as a dog and her husband is here with us at the hospital. I invite him to have lunch with us because honestly, I can't even begin to imagine what it's like to have to go through the same thing alone.

As we're sitting and having lunch, our Pastor comes to the hospital to sit and pray with us. Never mind that he's only been at our church for less than a month, never mind that he's never been to Children's Hospital Boston, never mind that he's met G maybe three times.  He's there, completely and fully there for us. We eat our lunch and pray for our boys, Pastor, parents, strangers. We pray that God's hand will guide the surgeons, we pray that He will heal our boys, we pray that He will watch over them and that His will be done. We pray.

That moment when a parent's heart stops

Being a parent is often a crazy ride where you hold on for dear life and hope that somehow, some way you and your kids make it out safe on the other side. There are moments when your heart stops and you realize the enormity of what it means to have someone else depend on you for their very existence.

I have a knack for remembering obscure numbers and dates, but there are instances when something happens in your life and the date will remain etched in your memory forever. I've been going through a lot of those this year, hence the constant 'let's reexamine the past!' posts. The problem is that because it's been such a busy, crazy year, I haven't had the chance to sit down and document what's been going on in our lives and now that I'm starting to see the proverbial light at the end of the tunnel, it's time to spit it all out.

On April 2, 2012 TDH Man and I took GFord to a routine 18-month checkup at his pediatrician. He was just getting over a cold, but during the exam, the doctor looks at us and says "Have I ever heard a heart murmur on him before?" We said no, not that we could remember (and I doubt that we'd forget something like that!). Dr. D said "I'm sure it's nothing, but let's follow up, just in case". So, we leave that appointment and make a follow-up visit at the local Children's Hospital Pediatric Heart center.

April 24, 2012 rolls around and we drag GFord to yet another doctor's appointment. At this point, our boy is a pro at doctor's appointments (I'll post about that journey another time), but let's just say he's really well-behaved for the most part, especially considering he's a very active 18 month old. The cardiology nurse looks him over, asks us a bunch of questions and spends quite a while listening to G's heart. After a bit, she says "Well, I might hear just a little bit of a murmur, but it's barely there. It's really up to you; we can take a look by doing an echocardiogram or we can wait and see if it gets any louder." TDH Man and I decide that since we've already taken the day off work, it's better to just get it all done now while G is still being semi-cooperative. Looking back, I realize time and time again that this one decision pretty much saved our son's life.

The echocardiogram takes about 45 minutes and TDH Man spends most of the time distracting G with snacks and pointing out silly things on the walls or on the TV screen that's set up playing a DVD for him. I spend most of the time staring at the screen, watching the tech review the same spots over and over, turning the display into a million colors and shapes and holding my breath. He's so calm that I'm pretty much convinced that all is well and start to feel that this is just another instance of over-cautiousness on everyone's part.  Once the ECG is over, we sit and wait until the cardiology nurse comes in to discuss the results. TDH Man and I take turns entertaining a now tired and hungry 18 month old who is dying to get out of this tiny exam room. The nurse comes in smiling and pulls up a chair and I'm thinking "Finally, we can go home!", except the next words out of her mouth aren't what we thought we'd hear.

"Your son has a rather large hole in his heart and he needs open-heart surgery right away".

My first instinct is to laugh, so I just smile really big and say "Really?!" like it's a joke and it's actually funny, except that it's not. It's really, really not. He's 18 months old. He's in the 99th percentile for height and weight; he hardly ever gets sick and both doctors BARELY heard any murmur. How can he possibly need open-heart surgery?

TDH Man and I sit there and absorb as much information as we can. We're told that he'll have the surgery at Children's Hospital Boston because they are the best in the country and the local Children's Hospital doesn't even bother performing this type of surgery anymore because Boston is so good at it. We're told that it's an 'elective surgery', which makes me laugh again because it doesn't mean what we think it means and we try every which way we can to weasel him out of open-heart surgery. "Elective, so like, we can choose to just NOT have it?" Um, no, we're told, elective like we're not rushing him to the hospital right this minute, but if he doesn't have it, he will most likely die before he's 18.  That kind of elective.

TDH Man and I are librarians through and through and so, the second we leave that office, the research begins. GFord was diagnosed with a congenital heart defect called an Atrioventricular septal defect (AVSD) in the primum location. Basically, the hole that should have closed the second he took his first breath never closed. In fact, it was so big that it caused his valve to cleft and now his heart was swelling and was working too hard to get the blood where it needed to be. The murmur was so quiet because the hole was so big that there was very little tissue moving around to cause the usual noise. This defect is the kind most commonly found in Down Syndrome children and in those terrible stories you hear of teen athletes dying on the playing field with an undetected heart defect. And now it was in our baby boy.

So, a year has passed. Tomorrow is the anniversary of his surgery. I'll post more about it later, but for now, I just want to remember how thankful I am that we've all made it through with just this one thin silver scar.