The Tjarks Family: May 2014

Something magical happened to our family on March 13th, 2014! Our sweet and highly anticipated baby boy made his appearance. It turned out to be quite a rollercoaster, but two months later, I'm happy to say that Michael is doing very well at home.

By the end of my pregnancy, my plans to have a V-bac quickly went out the window. Turns out my body doesn't prepare to deliver a baby very well!!! Anyway, I was able to schedule a date for a C-section, and on the morning of March 13th, we left sweet Benjamin with Nani and drove to the hospital! The surgery went really well. It really is an indescribable experience. Though there is not any pain, it is extremely uncomfortable to have a baby that way. I remember thinking multiple times, "Oh, I hate this! I never want to do this again!" But that baby came out just fine with hardly a cry at 12:07 , and I watched as they took him over to wipe him off and make sure he was healthy. Joel followed their every step, documenting those moments and telling me exactly what was happening. Sweet baby boy Tjarks weighed 7 pounds and 9 oz, and was 20.5 inches long. We were so surprised to see that he had a head of light brown hair with the sweetest baby mullet ever. :) They quickly stitched me back up and sent us to post-op, where I took that baby in my arms and got to know him a little better. He nuzzled and nursed right away, and was so quiet and content. The nurses said he was perfect except for lower than normal oxygen sats (in the low 90s), which they didn't seem too concerned about at the time. My mom even snuck in to hold that baby boy and we just enjoyed him for about 2 hours until things started to get more exciting than we ever wished for...

Right before our time in post-op was up, Michael started making grunting sounds with each breath. A nurse next door popped her head in and asked how long he had been doing that. They told us that sound meant he was struggling to breath and made the decision to take him down to the NICU and monitor him for awhile. At this point, I was sent up to my hospital room to recover from surgery and was unable to go with Michael. Joel didn't leave his side, though, for the next couple days, and I know that he is forever changed from what happened next. Michael struggled to keep his sats up even with a nasal canula and was eventually put on a CPAP machine. Joel and the wonderful Dr. Khan spent an entire night sitting with that baby, watching his oxygen sats dip on the monitor and just praying they would improve. Nobody could figure out why his sats were so low... he was such a healthy baby in every other way. Michael had no signs of infection and a mostly normal X-ray of his chest. By some form of inspiration, his doctor in the NICU thought to call a cardiology consult. So in the middle of the night, (about 3:00 am), Dr. Bendaly came in and did an echocardiogram, which revealed an incredibly rare congenital heart defect called cor triatriatum dexter. Basically, it means there is a membrane that is running through his right atrium and diverting blood from his IVC through his PFO, causing him to mix unoxygenated blood with the oxygenated blood. He also showed a much smaller and thicker right ventricle than normal, which remained a mystery. At that time, the cardiologist suggested Michael be flown out that night to Dallas to have have the membrane removed. (This requires open heart surgery.) All the while, I was still in my room and had only been down to see him for a few minutes. I hadn't even been able to hold my own baby since post-op due to the CPAP machine. The worry and fear weighing down on us at this point was just crushing. We notified our family members, and asked for prayers from everyone we knew. We knew we wanted Michael to have a blessing before they rushed him off anywhere, so Joel and I finally decided on a name (we both loved the name Michael and David is after my dad.) Soon after, Joel and Brian Tjarks placed their hands on him and Brian gave a beautiful and emotional blessing of health and strength. After that, all we could do was sit and wait. It seemed hundreds of people came in with instructions and information. The flight team, insurance people, doctors, nurses... It is all a blur. I could barely pry my mind away from the sheer horror I was feeling to focus on what anyone else was saying. At this point, I could do some walking on my own and all but abandoned my own hospital room to stay with Michael as much as I could. The NICU is an incredibly draining place. We tried to remain optimistic because there are some stories in that place that just break your heart, but it's hard to feel hopeful when your tiny, freshly born infant, who you've barely touched, is surrounded by wires and attached to countless monitors and machines. I felt so robbed of my motherhood in those first few days, unable to do anything to nurture or help my son. To say it was the lowest moment of our lives together would be an understatement.

And then, the miracles started. The outpouring of love, support and prayers came flooding in faster than we could keep up with. I remember looking at my phone every few hours and seeing dozens more facebook updates from people reaching out. Slowly and miraculously, we started to see improvements in Michael. He had stabilized enough that they allowed me to take him and hold him in my arms. I even attempted to nurse him, and he latched right on. Against all odds, his oxygen sats even showed improvement during that nursing session. From then on, they let me take him every few hours and rock/feed him, and we watched the monitor with more and more hope. Dr. Bendaly was so impressed that he even decided the surgery might not have to be so emergent. Hours and days went by, and little Michael surprised everyone by getting stronger and more stable. Wires came off, lines came out, and machines got unplugged. I became his primary caregiver with support from the nursing staff. Surgery looked like it could wait for a few months or up to a year. Finally, six days later we packed him up and walked out of those NICU doors for good. Words cannot express the gratitude we feel for how everything turned out. Little Michael saw miracles that week. My mom said it best: "You spell Michael M-I-R-A-C-L-E."

We were sent home with an arsenal of oxygen equipment. We noticed that his sats regularly dropped to the low 90s/high 80s while he was sleeping, so we were instructed to put a nasal canula on him at nighttime, (mostly so Joel and I could sleep a little more peacefully.) We also had a oximeter to make sure everything was looking good. Michael did well at home, and stayed in the low 90 range for a long while. We didn't do much for those first few weeks, as we didn't want to risk him picking up anything that might make him sick or cause a respiratory illness. We only had one scare when he was about two weeks old. While lying on the couch next to Joel, Michael started spitting up quite a lot of blood. We freaked out and rushed him to the ER. There we had to sit and watch as he got hooked up to more tubes and wires again... There were many moments when Joel and I wondered how we would make it through his life without dying of worry ourselves... Lucky for us, it turns out that Michael only ingested some blood from a cracked nipple while nursing, and it was completely unrelated to his heart condition. Whoops. Better safe than sorry!

We have had two cardiology appointments so far since we brought Michael home. The first one was at about 3 weeks, and were pleased to see that his blood oxygen saturation was mid-90s, which is what we had seen trending at home at the time. The echocardiogram also showed significant improvement! His right ventricle looked much better, showing more elasticity than before. In fact, we left that appointment with instructions to take him off oxygen at nighttime and see how he does. The second cardiology appointment was just a couple weeks ago, when Michael turned 7 weeks old. His sat was 100 (!!!) and the echo again showed huge improvement. This time his right ventricle looked "nearly perfectly normal and the next time he returns it should be 100%." The membrane diverting blood is still there, but Dr. Bendaly estimated about 80% of the blood is going down in the right direction, with just a small portion being shuttled across the heart. We decided that at the next appointment later this summer he will do a bubble test to see exactly how much blood is going where. We were instructed to go ahead and take all that oxygen equipment back to the hospital (!!!), and then he gave us the best and most encouraging news of all: If we continue to see enough blood being funneled through that hole in the membrane to support good sats, there is a 5% chance the PFO will close on its own and we will have to do NOTHING at all. (That would be a serious miracle. I can't even allow myself to think about it because I don't want to get my hopes too high.) However, if it doesn't close on its own, we may have the option to take Michael into the cath lab and do a simple procedure there to close the PFO, requiring only an overnight stay. To say we would prefer that over open heart surgery is a huge understatement! We must wait and see, though, as time will tell what that membrane will do as Michael's heart grows. We hope that it will grow with the heart and continue to accommodate all the blood necessary. Anyway, even if he will need surgery, it is nowhere in the near future and that helps lower many risks, which we are grateful for. For the time being, all we have to do is love that baby and keep him safe and as healthy as possible. THAT I can do! :)

Besides the health issues he continues to overcome, little Michael is a dream baby. He just does everything a baby is supposed to do and has the sweetest temperament. He just had his two month birthday on the 13th! Here is a little list of things Michael is up to:

*At 6 weeks, Michael started smiling! He loves to be talked to, and I think I even heard the beginnings of a little chuckle in the past couple days! Hopefully that comes soon!
*Michael is very verbal. He hoots and hollers as if he is speaking his mind. It is so sweet. You can see the concentration in his eyes as he tries so hard to get the words out and talk to us!
*Michael loves to nurse, and would just like to snack all day long, thank you very much.
*Almost more than nursing, he just wants to be held and snuggled. The continual disastrous state of our apartment perfectly reflects our priorities here.
*Michael loves to sleep on his tummy, which we let him do during all of his naptimes. At night, we abide by the rules and put him on his back! :)
*Michael spits up a TON. If he wasn't chunking up so nicely, I'd be worried he wasn't keeping any milk down at all!
*Michael has recently started reaching for toys. He hasn't quite grasped onto anything yet, but he is noticing things around him.
*Michael has been enjoying sucking on his hand. He makes a little fist and just kind of sucks all over it. No individual fingers yet... Just that sweet whole fist.
*Michael is nursing about every 2-3 hours during the day and 3-4 hours at night. (He even went 5 hours once!) He has come a long way... In the beginning, those nursing sessions took up to an hour long. Now he can eat in about 10 minutes or less. At night he does a great job of going right back to sleep, thank goodness! (Though I'm already dreaming of the day when I can get a full night's sleep again.)
*Michael is still sleeping a ton, which is great. When he is awake, which is usually 1-2 hours at a time, he seems well rested and very alert, but he does sleep quite nicely the rest of the day/night.
*Michael was blessed at the Mitchell branch on Mother's Day (May 11th.) Joel gave a very sweet and loving blessing.

I think I have pretty much wrapped up all the Michael updates. I can't end this post though, without documenting how much joy and happiness it has brought me to watch Benjamin with his baby brother. Michael is so lucky to have such an amazing brother to take care of him. <3 Joel and I are lucky, lucky parents!