He Accomplishes the Impossible | Knable Family
All along while pregnant we referred to our little guy as our miracle, and rightly so, as most parents do. However, I'd never know that that was indeed what Dylan would turn out to be... the true definition of a miracle.
Here is what will someday be Dylan's Testimony, it is lengthy, but I assure you... worth the read for anyone who doubts what our Lord is capable of or for anyone who just enjoys a reminder of His work. I've put this off for some time, partly because I have a newborn and no time, but mainly because I was hesitant to relive the emotions that were brought on by the arrival of our little man. I'd sit down at night, type a little, and leave it for a few days. I share this with the hope that it gets passed along and someone, somewhere realizes that our God can move mountains...
Tuesday, February 22nd Tim and I went to Doctor Mullin's office for our 39 week check up... I was still 3 centimeters dilated and 100% effaced. I struggled that visit with making the decision to have Dr. Mullin strip my membranes and was even hard on myself when I left, for declining... I was so anxious to meet Dylan. Oh well, I thought, he'll come when he is ready... and let me tell you, when he was ready...he was READY to come out! LOL.
The next morning, February 23rd, at 12:30a.m. I started to feel contractions and thought nothing of it really as I had been having contractions off and on for some time. However, they were coming on pretty steady at that point about 45 minutes apart. At around 3:30a.m. I woke up and they were even closer and more painful, I hesitated to wake Tim up because I didn't want it to be a false alarm, part of me didn't believe it was really happening! Tim popped up and started rushing to get his bag together (the bag I'd been telling him to pack for weeks now...). I started to bounce on the exercise ball to get my contractions to come on stronger and get little man progressing... by then the contractions were 5 minutes apart!!! It was so exciting, this is really happening, it was like the movies... middle of the night, rushing around the house to get everything together... a night, or early morning, I'll always remember. While the contractions were coming on close together and relatively painful, Tim asked if I wanted breakfast, I said no because I had the nervous butterflies and food was the last thing on my mind! So on the way to the hospital Tim stopped at Jack-in-the-Box, to get himself some breakfast!
Once at the hospital (around 5:00 a.m.) we checked in and I was wheeled up to L&D! We were so excited that this was the day we would be meeting our boy. Once settled in, the nurse checked me and I was already 7 centimeters! I was in pain, but thought I had some time until I needed to get the epidural, about an our later I was at an 8-9, whoa, that was fast. So fast in fact the nurse wanted to get a second opinion, so she asked another nurse to come and confirm... sure enough 9 centimeters. Meanwhile, Tim had been on the phone texting and calling to let friends and family know the progress. He called my parents back and said they'd better hurry, because since he last spoke to them, I had jumped to a 9! At this point I told the nurse to order the epidural, QUICKLY and I was immediately regretting putting it off! The contractions were strong. close together, and painful... that's the understatement of the year! Doctor Mullin came and checked on me... I don't think she realized how quickly things were happening... I was 10 centimeters and she said "Okay, let me call the office and tell them I'll be delivering a baby this morning!" About an hour later, our little boy was born at 9:04 a.m. weighing 8lbs and 20.5 inches long, with a head full of dark hair! He's perfect! My labor and delivery was speedy, but painful nonetheless. Words cannot express what my heart felt when seeing him for the first time... and each time after that.
After about an hour with just the 3 of us as a family they took little Dylan to the nursery to do all the 'newborn stuff'. A few hours later they brought our little boy back to us and everything was great, he scored perfect on his APGAR tests and he had been doing wonderfully at breastfeeding! Perfect. While we were ooing and awwing over our little bit, our pediatrician, Dr. Chen, came by to give us her report of Dylan. Dr. Chen said everything was great and he is doing all the usual newborn things, however, she said she heard a heart murmur and that although heart murmurs are pretty common in newborns and usually work themselves out, Dylan's was a bit louder than she felt comfortable with and wanted to order an echocardiogram to see what was going on. Naturally we panicked, but were reassured by her telling us that many newborns are born with heart murmurs and 'most likely' that is all it is and he will out grow it. We would have to wait until later that evening or even the next day to find out the results of the echocardiogram.
Later that afternoon, Dr. Chen called my room and told me that the echocardiogram showed that he had aortic valve stenosis (see link for more detail (http://www.mayoclinic.com/health/aortic-valve-stenosis/DS00418), meaning his aortic valve was narrowing and not allowing accurate blood flow. He needed to be transported to a level 3 NICU immediately downtown to the Memorial Hermann Children's Hospital. We were at the Katy Memorial Hermann and they did not have a level 3 NICU. The reason for the rush, was due to the fact that many newborns are born with a hole in their heart, once it closes (that time frame varies for every newborn) the aortic valve takes over and provides the blood flow that the hole in the heart did (that's the easiest way to explain it). So, in Dylan's case, the doctors were concerned because they didn't know that when Dylan's hole were to close (at any give time) if his narrowed aortic valve would be able to provide adequate blood flow.
By now it was in the late evening. They took him from my room and took him to an isolated room in the nursery... they needed to start an IV line so that while being transported downtown, should his hole start to close they could start him on the medicine that slows it down to allow enough time to get him to the level 3 NICU. I was able to nurse him one last time before they took him away in a little, hard, plastic, incubator... seeing him being taken away in that was heart wrenching, so little and helpless. We walked past our room where my parents and Tim's mom were standing outside my postpartum room... my dad stopped the transport team and asked if we could pray over Dylan, so we did... the first of many prayers.
What I thought was the hardest part...
I could not leave yet because I hadn't been discharged, but Tim and his mom headed downtown. Away from my two boys... that was a rough night, as I lay there in the hospital bed that night, I immediately turned to God again. My mom stayed with me and my dad went to our house to stay and take care of the pups. Tim called right when he got to the hospital (around 9pm or so) and sent me a picture of my baby boy. He continued sending me pictures every few hours and reassured me that him or his mom would be staying with him at all times. At that point we were waiting to meet the cardiologist, Dr. Rao, known as the "Godfather" of the 'balloon procedure' for aortic valve stenosis.
What's the balloon procedure? The medical term is balloon valvuloplasty when they use a catheter and go through the inner thigh (well, in Dylan's case, that was the site of entry) and they go up to the heart and inflate a balloon to widen the aortic valve, once widened, they deflate the balloon and pull it back out. Simple enough, right? I'll talk more on that topic in a bit.
Thursday morning Dr. Mullin came in and discharged me early, knowing what was going on, she exempt me from the discharge class and made sure to get me out quickly so I could be with my boys. My parents and I headed down to the hospital that morning... I was so nervous and anxious to see Tim and Dylan... I hated being away from them and not knowing what exactly was going on. Dad wheeled me up (I was still in pain!) to the NICU, I walked in, and saw my little boy hooked up to monitors and in a room full of such small, sick, babies... this could not be happening to me, this doesn't happen to us... I broke down in tears, all I wanted to do was hug my husband and cry. Tim was changing Dylan's diaper with a big grin on his face when he saw me...Tim was my rock, from that moment on...well he always has been. Before I held my baby boy, I was told to put antibacterial on my hands up to my elbow and to put a cover on... this was all so foreign to me, I couldn't believe this was where we were.
Once we met with the cardiologist and his team we were told he would be doing the balloon procedure the following Tuesday, February 29th, if the aortic valve showed signs of narrowing even more. That Monday they planned to do another echocardiogram to check the valve for further narrowing and to determine if the procedure did indeed need to be done Tuesday. So for those 6 days we stayed by our little boys side. As we made his little space in the NICU our home, we quickly realized how fortunate we were to have a (other than the stenosis) healthy, 8lb, baby boy who was doing all the things newborns do. We were also so glad to be able to hold him, breastfeed him, change his diaper, change his clothes, and even bathe him... we saw the same sets of parents, daily, come in who could only reach in and stroke their sweet baby's tiny body.
A social worker came by to talk to us Thursday about where we could stay to be close by. Talking with her, I realized, we were going to be here awhile. We decided to get a room at the actual Ronald McDonald house in the Medical Center... only $25 a day, we got it for 2 weeks. That night we stayed there... it made the situation very surreal, children with leukemia walking around, very sick kiddos... the place, while I was grateful existed, was very depressing for me. Tim walked me up to our room and went back downstairs to get some of our stuff... I sat on the bed and lost it, praying and crying out to God that he help me get through this and place his hands on my precious baby. We stayed there that night, but fortunately for us the rest of the time we were able to get a Ronald McDonald room at the actual hospital, down the hall from the NICU where Dylan was. This worked out wonderfully, especially because I was breastfeeding. Staying in the room, we had a phone so nurses could get a hold of us and we could call the NICU to check on Dylan. Every 3 hours when I was pumping, I'd wake Tim up and he'd call the NICU (Rabbit Room A, to be exact) and say "I wanted to check on baby Knable in Rabbit A", my stomach would get in knots hearing those words and all the way until he hung up..."what, what did they say, is he okay?" I'd ask every time. Each night was so scary, I hated the night time, I had this great fear that the room phone would ring and something would be wrong with Dylan.
The worst day of our lives... the 5%.
Tuesday, February 29th came around... the echocardiogram they did Monday did not show any major improvements, or it showed continued narrowing rather, and the doctors decided the balloon procedure was necessary. I remember one of the Fellows coming to have us sign the consent forms.... I was behind a partition feeding Dylan but listened, as tears ran down my face, to the conversation between him and Tim... the Fellow telling us that Dr. Rao is the best at this procedure, however, with any procedure there are complications... in this case a very low percentage (let's say 5%...) of any of them ever happening, hard to hear, but I felt confident that nothing would happen.
We were told that the transport team would come get Dylan in the morning, I couldn't feed him before the procedure, so his last feeding was at 5a.m. We waited and waited, never leaving him...finally, afternoon, they came and got him and escorted us down to the cath lab, I was so scared for our little boy, again being taken in the small plastic incubator, so helpless and little... the transport team stopped at the cath lab and opened the little door to the incubator and scooped him up and handed him to me... I kissed him and told him he would be okay and mommy would feed him real soon (he was crying and really hungry), we all said a prayer and off they went, my baby's life in their hands.
Mom, Dad, Michelle, Scott, Tim, and I went to the waiting room. Our stomachs in knots. We took turns going and eating (or trying to). The procedure would typically take about 3hours, there was a phone in the waiting room and we would get calls from the operating room with updates every hour. The first call: he just went under and they are about to find a point of entry, Dylan was doing fine. We waited after that for an update, however, what we got was much worse. About 2 and half hours into the procedure, the receptionist came and told us the doctor wanted to see us in the family room. My mother's instincts set in and I knew something was wrong. The 6 of us went into this small room, no noise, just silence...each of us thinking the worst but afraid to say it out loud. I turned to God, repeating over and over "Please Lord, please don't let anything be wrong with my baby, please protect him, please let him be okay, please God!" That was the worst moment... no parent should ever have to feel that way. We waited and waited, my dad finally went and sternly told the receptionist to get a doctor to come and tell us what the hell was going on. Finally Dr. Rao, a Fellow, a nurse, and a Chaplain came into this tiny room. Dr. Rao explained that "the procedure went well and was going smoothly, almost perfect..." then he says that they"...quickly noticed blood filling his pericardium (space around the heart), at some point the catheter had nicked the heart causing it to bleed out, putting Dylan into cardiac arrest... CPR was performed and Dr. Douglas, a surgeon, had to emergently come in and open up his chest to put a drain tube in to stop the bleeding..." what? was this real, is this really happening? I just kept asking if Dylan was 'okay' what I really wanted to know was, was he going to make it, but I couldn't bring myself to say those words. Dr. Rao said "at the moment he is stable". Dr. Douglas then came in and explained to us the severity of what happened. I noticed that he was very cautious with his word choice and that scared me. He told us that due to the emergent need to get into Dylan's chest, there's also risks of infection, because he didn't have time to scrub in and it wasn't as sterile as it would be for a planned surgery. From the time Dylan went into cardiac arrest to the time Dr. Douglas got there to get the tube in, it was 25 minutes... 25 minutes of CPR...25 minutes of fighting for my little boy.
As the doctors spoke, nurses came in and out, and the chaplain tried to comfort us... I was feeling as if I was having an out of body experience, the room was closing in, and I couldn't move. I thought if I moved or left the room, reality of what was happening would set in, I would then have to face what was happening...and I didn't feel prepared to do that.
We weren't able to see Dylan until about 2 hours later, once they had him taken to the PICU and he was stable. Dr. Douglas told us that Dylan's chest was still open in case they needed to go back in, it was a precautionary measure. He told us that Dylan's recovery would be a long one and he has a long ways to go and made sure we understood the severity of the situation. Nothing, NOTHING, could ever prepare me for what I was about to see.
We were given two passes to use for going to see Dylan. Everything seemed so different in the PICU. We had, as much as you can, gotten used to the NICU, it was starting to feel comfortable... I guess it was also where our little boy was just a happy, content baby... the PICU now symbolized a dark, scary place. The charge nurse came and explained how the PICU worked and what to expect. We took the passes and walked to Dylan's room... I held on tightly to Tim's hand and arm. The rooms in this section had large glass windows. As we got to his room, I looked in and lost it. I saw a swollen, white, cold, baby boy, not the same boy I left hours earlier. Dylan was hooked up to a dozen or more medicines, things were beeping, wires everywhere, and my baby boy's chest was open. He had a breathing tube in his mouth, oxygen tube in his nose. I will never be able to explain what I was feeling in those first moments of seeing him. But, I'll tell you, I was not prepared... not one bit. I kind of froze, I was afraid to go near him, I didn't know what everything was. But, I leaned over and kissed his cold little head, tears dropping onto him, and told him to fight and that we were right there with him and would not leave him, "keep fighting buddy, you are so strong, you can do this..." I kept telling him. Tim and I cried and prayed together. We stayed in there for a while as the nurse explained what everything was, I will never forget her expressions, they were not hopeful...at all. She looked just as terrified as we did. We walked back to the waiting room, I saw my parents and just shook my head and cried and looked at my dad as if to say "he's not okay, it's not good". They took the passes and walked back.
You might be wondering why Dylan was cold. Well, they had to keep him a certain temperature to sustain any possible brain damage. They kept him cold for 24 hours. We were starting the critical 72 hour waiting period. They would slowly start increasing his body temperature and if the brain or organs had any damage from the lack of blood and oxygen during CPR it would likely surface within that time...a waiting game and the worst 3 days of my...our lives.
Dylan didn't open his eyes or do anything the first 24 hours. They would do response checks and he eventually would wiggle his toes when his feet were tickled... good news. Still, we hadn't held our baby or seen him open his eyes since they took him for the procedure. He was 'stable' but critical still at this point. Day 2 was a bad day, his worst day, his blood pressure was not stable anymore and they increased all of his medications to help him. He was also not urinating as much as he should have been. The doctors told us this could be a sign that his brain was not functioning properly, it wasn't regulating urine output... they gave him medicine to help that hormone in the brain do what it should.
During all of this we had an overwhelming amount of people praying for Dylan, our church family, co-workers, friends, friends of friends, family, nurses, everyone praying that Dylan could pull through this. Our pastor, Pastor Matt, contacted us and we talked about having Dylan baptized. Knowing the Lutheran belief about baptism, I was not prepared to have him baptized, I felt as though that meant I was giving up on Dylan and giving God permission to take him... I know that sounds crazy, but that was my thought. However, I put aside my selfish thoughts and we made the decision to baptize him. On Day 3 (almost 72 hours) Pastor Matt came to the hospital, we talked for a little bit, telling him thoughts we'd had, up until that point had been too scared to say out loud, even to each other... we prayed... and Pastor Matt gave us clarity on baptizing Dylan and we knew it was God's will. Pastor Matt, Tim, myself, Mom, Dad, Michelle, and Nicole all walked back to Dylan's room. Pastor Matt asked for some type of basin to put the water in, I grabbed the small, blue bowl that we used to put water in to bathe Dylan when he was in the NICU. We squeezed into this tiny hospital room, making a circle around Dylan's bed, holding his little hand, and Tim's in the other. Pastor Matt's words came so naturally, making our baby boy a Child of God, his words from God were comforting. I won't go into details, because it was an intimate moment, one I'll never forget, and I don't want to belittle it by trying to type out the emotion and Faith felt in that room. But, one thing is certain, our God Almighty was there... and he was about to move mountains.
72 Hours over... Day 4...
Dylan opened his beautiful eyes.
He was responsive to touch.
He started to come off of his blood pressure medicine, his bp stabilized.
All medications were slowly being able to be reduced.
He was able to regulate his own body temperature.
Many other things started going in the right direction, Tim and I would constantly say we were 'cautiously optimistic' too scared to really let ourselves be excited when little things would happen. Some days it would be one step forward, two steps back. We continued to pray and we had the prayer of millions of others... that being the only way our baby boy would recover. Let me remind you, Dylan was not 'supposed' to be recovering as quickly as he was, it shocked the doctors and nurses. Now it is a bit foggy, the order of events, but in the days following he had his chest closed up, he started regulating his urine output, his bp continued to improve, he was off oxygen, he could successfully breathe on his own, he was extubated (breathing tube taken out), and most of his medications were discontinued. You might be saying...great hospital, great doctors, it is no wonder... but make no mistake, this was the work of a Physician much greater than any on Earth. One of our nurses said it perfectly, "...his progress has nothing to do with us, nothing to do with the doctors, it is all because of the man upstairs...". Exactly.
Things were progressing in the right direction. One morning we went down to his room and Nurse Becca (she was wonderful, also the one that said the quote above) and Dylan were listening to Christian music on her smartphone and watching March Madness... no objection from me or his daddy! She was probably the one that made us realize just how miraculous Dylan's recovery was. She was a woman of faith and continued to remind us that Dylan was a true miracle and she felt honored to see it happen before her very eyes. That morning she said, bluntly (as she had been since we met her) "so you want to hold your baby or what?" I thought, I do, but I'm scared I'll hurt him, he has a lot more wires and his chest... she interrupted me and said "he's fine, I'm getting you a rocker"... so she dragged a rocking chair to his bedside told me to sit, down picked up my baby boy and handed him to me... the first time in many days that I held my baby... it was an emotional moment.... Nurse Becca walked out, tears in her eyes, saying under her breath "...and that is why I do what I do...". I'll never forget her or the connection I felt with her and her faith in God.
A few days and Dylan was no longer considered critical, but needed to be able to eventually eat from the bottle before he could go home. This was a long process. We were moved to a room that was bigger, I'd compare it to a postpartum room. We had a place for Tim and I to sleep, small window seal bed and a chair that made out into a bed. This would be our home for the days to come. Dylan had to be fed through a feeding tube and still had central line for a few medications that were needed until we left. They slowly started putting breast milk into his feeding tube, yes, during all of this I was still pumping every 3 hours to produce milk for him...in a way it made feel connected to him during those days I couldn't hold him or do anything to take away his pain.
The stay in his room was the same sleepless night, over and over, for all 3 of us! He had to have medication at different intervals and since some of the started in the middle of the night after his procedure, they were on weird times... 11pm, 1am, 3am, etc. We'd get him to sleep and all tucked in and knock, knock, knock, in they come to mess with him! A-NNOYING! And he would have x-rays in the middle of the night as well... those were to check and make sure of 2 things 1)no fluid in his lungs and 2)his sternum was healing correctly (side note: they had to pull his sternum together using wires to get the bones to heal back together from them cracking it open to get to his heart...those wires will be in his chest forever...).
Eventually we got to the point where we were feeding him with a bottle. The doctor told us that he wouldn't be able to take thin breast milk right away(I was thoroughly upset after learning this...). The reason? When babies (and adults) have to be intubated (breathing tube) they often forget how to swallow and eat and have to relearn the skill. He had a swallow study done once we were moved into the new intermediate care room. A swallow study is basically an x-ray of your esophagus, Dylan had to drink what is called barium, a liquid that can show up through x-ray to see if it is traveling down correctly! His first swallow study showed slight aspiration (liquid goes into the lungs). So, we had to thicken his milk so he could swallow it correctly, as well as fortify it (add calories with formula)to help him gain weight. So, I continued to pump around the clock, a tiresome task to say the least, but with multiple conversations with a lactation consultant, we made it work! The occupational therapist worked with us and helped us teach him how to take the bottle... he caught on pretty quickly! We would get so excited when he would take a whole 2 ounces...haha...he now takes 6 ounces every 3 and half hours!
On March 17th, we were discharged! He was released by cardio, his surgeon, and pediatrics. So here we are, 4 months 16 days old (2 months old when I started this blog) and I am extremely happy to say that now, other than a few little scars to remind us of God's work, my little boy's only issue is napping... and let's be honest it is more of an issue for his OCD Mommy than anyone else, LOL, he seems perfectly content going off of 45 minutes of sleep every few hours. :)
Dylan will continue to see a cardiologist for the rest of his life, while there is no cure for his heart condition, the hope is that the aortic valve will not start narrowing again anytime soon... so far at each check-up it has remained opened. However, it is almost certain that one day (maybe when he is a toddler, maybe when he is 40) it will start to narrow and he will need some type of surgery. We continue to pray that that day is later rather than sooner.
This blog does not do Dylan's experience justice or even come close to showing the presence of God that was felt the entire time Dylan was fighting. Dylan's recovery can only be summed up in one word... miracle. Dylan has brought myself and Tim closer to our God...it saddens me to think that some people do not know the love, mercy, and grace that He provides in time of sadness. I do not know what I would've done if I was not able to just break down and cry out to Him, what would've happened if everyone didn't pray without ceasing, what would happen if Pastor Matt didn't make my baby a child of God, what would happen if for one moment I lost faith... there lies the reason for this blog; I hope no parent has to ever come close to losing their child, but if they do I hope Dylan's story is at the forefront of their minds... mostly I pray that after reading this that anyone who has doubted the unfailing love and comfort that is found in the Lord, just for a moment, begins to wonder what it is like to have a relationship with Him and what it is like to have Him on your side.... now you know, it is miraculous.
I'll leave you with a verse that we had hanging in Dylan's rooms at the hospital, this is also what Pastor Matt says at the end of every church service:
May the Lord bless you and keep you.
May the Lord make his face to shine upon you,
and be gracious to you.
May the Lord lift up his countenance upon you,
and give you peace. -Numbers 6:24
Over the past few years, we have gone to the cardiologist about every 6-9 months to have echocardiograms and EKG, etc. Each time they were checking to see how bad the leaky valve was and how large his left ventricle was growing. We knew that he'd eventually have to have OHS, we just didn't know when. So years went on, he continued on his Enalapril for his blood pressure... then May of 2014 we found out that it was time for him to have surgery... his valve had developed moderate-severe leakage and his left ventricle was enlarging. We scheduled the surgery for August 19th, 2014. The plan was to do one of two things, 1) repair the aortic valve, or 2) do the Ross Procedure, replacing the aortic valve with his pulmonary valve; obviously the latter is invasive of the two. Dr. McKenzie (our surgeon) at Texas Children's Hospital performed the surgery and was able to successfully repair the vale and did not have to perform the Ross procedure. The surgery was successful, Dylan is doing wonderful! We actually just had our 4 month post op appointment in December 2014 and everything looked great. He still has leakage, but that is common with his CHD after any type of intervention. He will need another surgery between now and his teen years and then also when he is an adult he'll need to get a mechanical valve. We couldn't be more proud of our brave, Zipper Club Member! He is now a big brother to his two sisters, 3 year old Emily and 6 month old Kate! :)
With God, all things are possible...