Ryan Edward McClain

Would you want to know? If something awful were going to happen, would you want to know that it was going to happen, but not know when? Or would you just want to live in ignorant bliss until the terrible thing happened? Either way, something horrible happens, and knowing or not knowing cannot stop it from happening. 

We started out in December like this:

We'll call this phase ignorant bliss. We were so excited to add another member to our family! Our expected due date was August 26, 2016. We kept it pretty quiet, and only shared with our family and very few friends, but we were already making all those baby plans that everyone makes - names, nursery, etc.

As part of our routine prenatal care, we participate in genetic screening that includes a nuchal translucency ultrasound at 13 weeks that examines the fluid at the base of the baby's neck as a screening for Down syndrome and checks for heart defects and other genetic disorders. We showed up for our appointment on February 22 at 7:30 am feeling nothing but excited to see some images of our baby. We did this same ultrasound with Gavin, and it gave us some of the best ultrasound images we have of him; we expected the same for round 2. After the ultrasound technician took all the photos she needed, telling us what each one was, she said she had to take a few minutes to catalogue them and have a doctor review them before we left. We sat in the room while we waiting, talking about our plans for the rest of the day and trying to entertain Gavin with toys and books.

When the technician returned, there were several doctors with her. Wasting no time, one doctor said, "I'm sorry, but it looks like your baby has a serious heart defect, as well as some other defects that we want to go over with you." They reviewed the defects with us, which included the heart defect, a very enlarged bladder (the size of the baby's head), an omphalocele (intestines developing in a sac outside the abdominal wall),and apparent neurological damage evidenced by the posture and lack of movement of the baby's arms and hands.

Crushed doesn't even begin to describe how we felt. I think I cried harder than I ever have before, and longer too.  The rest of the day feel like a blur. Our genetic counselor arranged for us to immediately travel to another hospital to have a CVS (chorionic villus sampling) to sample the placenta, which shares genetic material with the baby and can be tested to determine genetic makeup. Before the CVS, we also had another ultrasound and a fetal echocardiogram to examine the baby's heart, which revealed that the left chamber of the heart was very enlarged and the right chamber was very small and weak. Our doctor who performed the CVS was kind enough to snap a few pictures of the baby's profile for us.

Four days after testing, we received the results of our CVS. Our baby had Trisomy 18, also known as Edwards syndrome. The defects we were seeing were a result of a third chromosome added to the 18th pair. Here's an image of the baby's chromosomes:

XY = baby boy

Trisomy 18 is rough, for many reasons. One of the hardest things for us to deal with was the many unknowns that come with it. Some babies don't make it very far through the pregnancy, and some babies make it all the way through pregnancy, only to not make it through the stress of the actual birth. Our OBGYN said we could carry to term, but our genetic counselor didn't think so, given the severity of the defects the baby showed. They both recommended that we continue with regular monthly prenatal visits, as nothing could be done to change or fix any of the baby's defects and we chose not to terminate the pregnancy.

We'll call this phase partially devastated - we knew there wasn't a chance for a good outcome for our baby, but we were still pregnant with a baby that was growing and alive. The happiness was gone, but the complete devastation hadn't set in, because we still had our baby; he was still alive. Our week 14 checkup went normally - baby had a regular-ish heartbeat and was developing small, but still growing. Our week 17 checkup was different - the doctor could not find a heartbeat with the doppler, so she brought in an ultrasound to find the baby. She was unable to find a heartbeat, which a second doctor confirmed, and measurements showed that the baby had most likely passed a week or so before. Even though I was expecting it, maybe even hoping for it (if I'm being honest), it still broke my heart. I think a small part of me was still hoping for a miracle, and the rest of me was still just devastated that our baby boy was gone. This is when the total devastation phase that sets in anytime you lose someone you love.

We checked into the hospital on March 23 (two days later) to be induced to deliver our sweet baby boy, and almost 12 hours later, Ryan Edward McClain arrived - March 24, 2016 at 6:47 am weighing only 0.7 oz and measuring 5 1/2 inches. The nurse was kind enough to wrap him in a tiny blanket, and we were able to have him with us for a few hours. Then we let him go. Those who know about our situation already have been so kind to bring meals and send flowers, and we appreciate it all. Most people who do know say "I know there's nothing I can say....." and there's not. There's nothing that can fill the hole that Ryan left, and that's just going to have to be how it is for now. For now, we appreciate the hugs and the "I'm so sorry"s. The entire labor and delivery process brought us some closure and a little peace, and we are doing our best to fill the rest of the hole with love, for both of our sons.

New Hardware

Gavin got an upgrade last week! He outgrew his first helmet faster than we anticipated. They shaved the Styrofoam all the way down to the plastic right after Christmas, so we had to order a new one. Here's a picture of what it looks like when he is getting his head scanned for a new helmet:

The black box on the top has sensors in it, and the stocking material has lots of tiny wires in it. The orthotist scans his head with a handheld scanner that is connected to a computer, and it builds a 3D model of Gavin's head. It looks like this:

They complete 4 separate scans like this, which takes about 5 minutes.  Fortunately, Gavin doesn't mind the stocking, and our orthotist has great toys to keep him entertained. Once the scans are completed, they send off the scans and 3 days later, viola - a new helmet!

We went with the basic black helmet this time (Greg says it's tactical). Gavin doesn't really care what color/pattern it is, as long as I let him go nakey once in a while.

In non-helmet related updates, we went to Utah for Thanksgiving, spent Christmas with Greg's family, Greg's shift changed to graveyards, and I started my second semester of graduate school.

We are in the midst of the "everything I touch must go immediately into my mouth" phase. Also, Gavin has become more mobile. Between rolling and squirming, he can go pretty much anywhere. He has decided that the dogs are his best friends, and he is always trying to pet, touch, grab, roll over, and generally annoy them; poor Dani is the only one patient enough to actually let him.

 

We tried rice cereal for the first time on New Year's Eve. He insisted on helping me with the spoon.

It went pretty well the first time, but he hasn't really been interested since. I keep offering, but he doesn't like it. A week ago, I made him sweet potatoes, and his face pretty much sums up how he feels about that. I got the same face when I made him apples. Looks like we're not quite ready for food yet - maybe we'll try again in a few weeks.

Helmet head (1 month post-op)

Our bubble-blowing, finger-chewing, Pterodactyl-screeching, back-to-tummy rolling man will reach the one month post-op milestone tomorrow.  Not that I actually knew what to expect, but he has surpassed anything I could have dreamed of in terms of his recovery.

At our post-op appointment on October 28th (19 days after surgery), our surgeon was blown away by how quickly and how well Gavin's incision was healing. I was a little surprised when they asked our permission to use Gavin's case as an example due to the extremely large calcified cephalohematoma he had prior to surgery. It is the largest they have ever encountered, and they would like to present a paper on his case. They showed me the front-to-back slices from his CT scan, and even though I knew first hand how large it was, I was blown away. The hematoma not only bulged out from his skull, but it dented inward as well. Another unique feature was that instead of the blood from the hematoma calcifying entirely, it had just formed a barrier around the blood. When the surgeon shaved down the calcified protrusion during surgery, the old blood that had been sitting inside gushed out - a lovely surprise, I know. 

Although they reassured us that Gavin's head looked fantastic, the surgeon recommended that we proceed with a helmet to help keep his head reshaping the way it should. I was a little disappointed initially, but I just keep telling myself that it would be a shame to have gone through so much and come so far and not achieve the best results.

We met with the orthotist on October 31st to have his measurements taken and his head scanned for the helmet. We returned yesterday, November 7th, to have the helmet trimmed and fitted. To say that it didn't go well would be the understatement of the century. Gavin was not feeling well, and had been throwing up all day. He hadn't been overly fussy or whiny, but the second the orthotist put the helmet on, he lost it. We spent 2 hours in the clinic, with the orthotist remeasuring, fitting, cutting, and shaving the helmet - Gavin screamed the ENTIRE time (even when the helmet wasn't on his head). It was terrible. I was so nervous this morning when I went to put his helmet on, but, miraculously, he didn't cry. Not even a little. He didn't smile, but he didn't cry, so I counted it as a win.

We are doing a graduated schedule to get him used to his helmet. Today was 2 hours on, 1 hour off. He didn't have to wear it for naps, but he fell asleep with it on no problem, so I just went with it.

Tomorrow will be 6 hours on, 1 hour off, and the following day will be 8 hours on, 1 hour off and have him wear it overnight. The day after that, he moves to 23 hours on, 1 hour off (for bath time and to clean the helmet). It's hard to not be able to kiss his head when I'm holding/snuggling/reading to him, but I'm hoping that all goes well and he'll only have it for 3 months. We've been told it could be 3-6 months, or longer if necessary. Fingers crossed it doesn't take that long.

Although he's still not sleeping through the night again yet, sleep training has helped him get back on track, and he now goes down for his naps like a total pro. We read a book and then I put him in his crib, and he just grabs his favorite blanket, rolls around until he's comfortable, and goes to sleep within 5 minutes. He still only naps for 40 minutes at a time, but it's fuss-free, so I'll take what I can get.

Gavin was Frankenstein's monster for Halloween, and Greg dressed up as a police officer (not really, I just took his picture when he came home from work). I dressed up as a stay-at-home mom/student: workout clothes with my hair up and no makeup (oh wait, that's how I look every single day!).

Gavin is rolling from back-to-tummy all the time (even in his crib when he is supposed to be sleeping), and has started pulling his legs up underneath him when he's on his tummy and pushing his bum up in the air as he tries to go somewhere. He just ends up pushing his face into the ground, but he keeps trying.  He's also discovered how to splash the water in his bathtub with his legs - funny, but very messy. He puts EVERYTHING into his mouth that he can get his hands on, and he screeches all the time, as loud as he can.

Even with all we've been through, I am constantly reminded how blessed we truly are. Sitting in the waiting room in our pediatric orthotist's office, I was reminded how lucky we were to just be getting a helmet. There were individuals there with braces, prosthetic limbs, and conditions that required so much more than a helmet for 3-6 months. I am amazed at how fortunate we are to have such a resilient and bright baby boy - I wouldn't trade him or any of our experiences with him.

Time flies: 2 weeks after surgery

I can't believe that Gavin's surgery was two weeks ago! In some ways, it feels like a lifetime ago, and in others, it feels like yesterday. He has been recovering like a champ, and sometimes I forget that he even had surgery.

Every night during bath time, while washing his hair, I use a cradle cap brush to gently scrub the incision. While combing his hair after bath time on day 7, I noticed that the majority of his stitches were gone! I know that they are dissolving stitches and are supposed to disappear, but it still took me by surprise. His left side stitches were gone first, but the right side wasn't far behind. These photos were taken 1 week after surgery.

 

We have been working a lot on tummy time and sitting up to try to regain some of the strength that he lost from laying on his back 24/7 while in the hospital and recovering. It's amazing how quickly he has returned to normal! He loves sitting in his Bumbo, especially when I attach the tray and put his toys on it so he can pick them up, throw them on the floor, and then watch me pick them up and put them back on the tray.  He still hates tummy time, so I find myself singing silly songs, making faces, getting the dogs to play fetch - anything to keep him distracted. His new favorite is the airplane: I put his tummy on my shins and lay on my back with him up in the air. 

He will smile and jabber at me, which I love - I just have to watch out for the giant globs of drool that he drops down onto me!

Before surgery, Gavin was sleeping exceptionally well at night. He would go to bed around 7:00 pm with zero fussing and sleep until 3:00 or 4:00 am (if he got up during the night, which he didn't always), eat, and go back to bed until 7:30 am or so. However, he has always been a terrible napper - 30 or 40 minutes max, and he has to be held, rocked, or walked to sleep. Since he was sleeping so well at night (even putting himself to sleep), I didn't want to mess with his groove until he was a little older. After his surgery, he was back on a newborn schedule. He was only sleeping for 2 hours at a time at night, had to be comforted constantly, and was still not really napping. 

Thankfully, my mom and Greg were super helpful so I could sleep, shower occasionally, and do homework. However, my mom had to leave a week after surgery, and Greg had to go back to work. Since Gavin was off of his pain meds on day 10 and had no swelling after 1 week, I decided to give sleep training a go.  It has been a rough couple of days to say the least. The first 2 days were the worst, but I think we are through the worst of it. Thankfully we tried to avoid forming any bad habits for him to break, so we are just dealing with him trying to figure out how to put himself to sleep during the day.

It's been 2 weeks today since surgery, and his scar is looking great! I am so blown away by how well he has handled everything. Here's some photos of how well he's healing.

He acts like the surgery never even happened. Lately, he has started to jabber and squeal more frequently (i.e. constantly), but he still won't laugh. He will open his mouth into a big smile and kind of sigh/squeal, but no giggles. I swear I have tried everything! He did, however, finally roll from his back to his tummy for the first time yesterday. I, of course, had stepped out of the room for 5 seconds, and when I came back, he was on his tummy, and he was not happy about it. He's been able to roll from tummy to back for about a month now, but he only does that because he hates being on his tummy, not because he's trying to go anywhere.

Even 2 weeks after Gavin's surgery, I am still getting phone calls, messages, cards, texts, meals, and gifts. It is so overwhelming to know how many people love and care about us all - our blessings are without number.

Home (Day 4 + 5)

It is so nice being home. We are all so much more comfortable in our own beds - Greg and I especially. Gavin is pretty much back to being himself, which is such a relief. He is quite a bit fussier than he has ever been, and he isn't sleeping very well (it's like having a newborn again!), but he is smiling (still no laughing, dang it!), shoving his fist/fingers in his mouth, and cooing and blowing bubbles.

We are using regular infant Tylenol to try and keep what I'm sure is a massive headache at bay, but we've had to use the hydrocodone a few times when the Tylenol hasn't been enough - especially at night.

His incisions look pretty good, considering. These are photos from day 4 (October 12th).

Since we were finally home for our bedtime routine (he fell asleep on the way home from the hospital the night before), I was able to give him a bath before bedtime on day 4 - thank goodness! He smelled like the hospital to me, and his hair was matted and stringy. The doctor told me to wash his hair like normal and use a craddle cap brush (soft bristled) on his incision. Gavin loves his bath time, and he was content and relaxed while I scrubbed his head. He doesn't mind at all when we touch his head and incisions, and I was able to clean everything up nicely. These photos are from day 5 (October 13th), and with the exception of one spot, there is very little redness or scabbing.

We are back to doing tummy time and sitting in our Bumbo, although he has lost a lot of strength/stamina during his stay in the hospital. He used to be able to sit up for 10 minutes or so in the Bumbo, and he was pushing up on his tummy. Now, we are lucky to get 2 or 3 minutes of sitting and he is only able to hold himself up on his tummy for short periods of time. I decided to put together his jumper, which he seems to like, even though his feet barely touch the ground on the lowest setting. So far, he will only tolerate 5 or so minutes of that.

The hardest part since being home has been sleeping. Before his surgery, Gavin was sleeping through the night at times (8-10 hours) or waking up just once around 4:00 am (6 hour stretches), and would put himself to sleep in his crib at night. Now, I'm lucky if he sleeps for 3 hours at a time, and he has trouble putting himself to sleep. I feel like I am back during the first few weeks after he came home from the hospital, but I'm hoping this phase will pass as he continues to heal. I don't know what I would do without Greg and my mom here helping me!

Gavin is such a trooper, and I am so thankful for the wonderful doctors, surgeons, family, and friends who have made this ordeal so much more manageable. We are surrounded by so much love!

Pediatrics + Home (Day 3)

Gavin's black eye got worse overnight. When the nurse woke him up at 6:45 am to do a heel prick for blood work, he was unable to see out of his left eye, which made him pretty agitated. The nurses all approached him from the left side, so I had to keep reminding them to talk to him so he would know they were there since he couldn't see them. 

Even though he couldn't see out of one eye, he was much more like himself than the day before. The oral pain meds didn't make him sleepy and dazed like the IV pain meds, so he spent longer chunks of time awake, kicking his legs constantly! He spent the morning nursing, sleeping, and wanting to be entertained. He had not, however, pooped since the surgery. He was very gassy from all the medication, and he was visibly uncomfortable as his tummy would gurgle and he would pass gas. To try and "help him along," we asked the nurse for a glycerine suppository.

When the neurosurgeon came in at 1:30 pm to remove the bandages, I was anxious and excited to see the incision. The surgeon cut and removed sections at a time, and Gavin did really well until we had to sit him up to finish unwrapping the gauze. He refused to be consoled, so he cried the entire time that the doctor was giving us wound care instructions.

Since he was already hysterical, we decided to go ahead and have the nurse administer the suppository. I nursed him to calm him down, and at 2:00 pm, he finally pooped. I don't know that I've even been so excited to hear him blow up a diaper while I've been holding him....

He was in much better spirits after having a full tummy and a clean colon, so he started cooing and smiling a little during the late afternoon. Just as quickly as his black eye set in, it started to disappear. By 4:00 pm, his eye was almost completely open and the bruising was fading fast. He started swelling a little more in his cheeks, and his head started swelling as well since the bandage was no longer keeping pressure on it.

The neurosurgeon was so pleased with how the incision looked, his stellar blood work, and the fact that he was eating and pooping while only using oral pain meds that he cleared us to leave whenever we felt comfortable!!! I was so excited!!! The pediatrician on the floor came in at 6:00 pm to do a final exam and make sure we were ok to leave. By 6:45 pm, we had our discharge papers, prescription, and Gavin loaded in his car seat - we practically ran out of there before they could change their minds!

I am amazed at how much his head shape has changed already. The surgeon told us the swelling would obscure and soften the shape for a while, but I can already see such a difference - it's round!  The surgeon has discussed the possibility of Gavin getting a helmet in a few weeks. They completely reshaped the skull during surgery, but there are parts that may not conform as well as others. This, plus the increased chance for plagiocephaly (head flattening due to positioning - like the babies with a flat spot on the back of their head) has made the surgeon consider the possibility. We will have a 2 week follow-up appointment and find out more then.

Overall, Gavin is doing great! We are using Tylenol to keep him comfortable, and it seems to do a pretty good job. He is still pretty tender and sore and fusses almost any time he is moved. I can't complain though, since it is amazing that he is home with us, only 60 hours after getting checked in for cranial surgery!!! He slept for a few sizable chunks during the night since no one was waking him up to check his vitals and woke up acting more like himself than ever!

We are so amazed at the marvels that modern medicine can accomplish and how quickly Gavin is healing. We have had the ideal surgery and recovery (so far), surpassing even the surgeon's expectations! I don't know what we did to deserve so many blessings, but I am so thankful for the never-ending outpouring of love and support from family, friends, and even strangers. We couldn't have done it alone!

PICU + Pediatrics (Day 2)

The Pedialyte and pain meds helped Gavin get through the night with relative ease. He finally went into a deep sleep around 4:00 am. The nurse removed his catheter around 6:00 am and a lab tech did a heel stick for a blood draw, and he didn't wake up for either!

When Gavin woke up in the PICU, he gave me a hint of a smile - not much, but it was good enough for me!!! His left eye had started to bruise and swell a little during the night, but it wasn't too bad (yet!).

At 8:00 am, I was able to give him a bottle of breastmilk that I had pumped. He drank the first so fast that the nurse thawed a second bottle, which he also devoured. Since he was keeping everything down so well, we started giving him oral pain meds. They take longer to kick in, but the effect is longer-lasting than the IV pain meds. Also, the sooner he can just take oral pain meds, the sooner we can go home!!!!

At 9:00 am, the nurse came back to remove the artery line from his right wrist. It had been taking a beat-by-beat blood pressure measurement to make sure that he wasn't loosing any blood internally. Since he had been moving around so much, he had thrown the line out of whack and it wasn't working. The doctor was comfortable with it being out since he was doing so well, so the nurse let me hold him while she and another aid removed it. The line was sutured to his wrist underneath all the tape, so he was pretty unhappy having it removed, but I was so happy to hold him again (even if it was on a pillow) that I didn't mind at all!

 It was a little difficult to hold him with all  the tubes and wires connected to him, but Greg and I spent the rest of the time he was in the PICU holding him. His right eye continued to swell and bruise, but it didn't seem to bother him too much since he could still see out of it pretty well.

At 11:00 am, we were moved out of the PICU to a room in the regular pediatrics unit. We were able to let family members hold him, and his vitals only had to be checked every 4 hours instead of constantly. We kept giving him bottles of pumped breastmilk and the oral pain meds, and he seemed to be able to rest pretty well.

At 8:30 pm, we asked for him to receive the IV pain meds since he was getting pretty agitated. He wouldn't take a bottle and was clearly uncomfortable. When the nurse tried to push the meds through his running IV line in his left foot/ankle, the meds wouldn't go through. They unwrapped the tape to find that all his kicking had pulled the plastic IV needle out a bit and then kinked it. Since the IV was useless, they removed it. They pushed the meds through the standing IV port in his right foot instead. (Thank goodness they left both in after surgery. I think if they had to stick him with another needle I would have cried!) By this time, his right eye had turned into quite the shiner and he was not really able to see out of it.

He was finally able to fall asleep and stayed asleep until the nurse came in to check his vitals around midnight. He woke up agitated, but they didn't want to give him oral meds since he hadn't taken a bottle since 6:00 pm and wouldn't take one when offered. I explained to the nurse that he had never had a bottle before this hospitalization, and she agreed that breastfeeding him would probably be best. Even though they aren't able to measure exactly how much he is getting, he would at least be eating!It took a few minutes for him to get comfortable and latch, but he ate like a champ! It was as though he was so relieved to be nursing again - he fell asleep in my arms. The nurse took the opportunity to remove the heart monitors stuck to his chest, so the only thing left on him was the IV port in his right foot.

The nurse woke us both around 4:00 am to have him nurse again, and he was able to have the oral pain meds again. He went right back to sleep and slept in until 9:00 am!

These 2 days in the hospital feel like they have lasted a week. They have been hard, but all I have to do is walk down the halls of the pediatric unit and I am reminded of how good we really have it. We have been, and continue to be so blessed.