There used to be a ride at Disneyland called Mr. Toads Wild Ride, it was based on the books and then the Disney movie that came after. As rides go, it was one of my least favorite as a child. It was bumpy and took many sharp turns, which threw you around the little car you were in, especially if you were on the smaller side. Around many of these turns things would pop up or jump out and make noise to make you jump and your blood pump extra hard in your chest. I would always feel my heart beating hard after that ride and never wanted to get on it again, of course everytime we went to Disneyland I somehow forgot or thought it would be better or maybe I was braver then before, so I would board the little car and take the ride again.
This ride we have been on for the last almost three weeks feels a lot like Mr. Toads Wild Ride. My heart is beating hard and fast, my blood is pumping and there are sharp hard turns and scary things jumping out at us and yet this ride doesn't have an end for quite some time if ever. I am buckled in and white knuckling my way through, knowing after this morning we are in for the long haul.
Our sweet daughter Koralyn was born just like our two older sons. Delivered by an uncomplicated routine c-section. On April 9th 2012 at 11:44am. She weighed 6 pounds 11 ounces and was 18.5 inches long. She came out blue and crying much like our boys. And I was excited and thankful when I heard her cry and got to see her sweet face. Of course after she was out and cleaned things were nothing like they were with Asa and Asher. Daddy got to hold her for a few minutes as did I (as much as you can hold a baby when they are sewing you back together with a big paper sheet across your front). The the "team" told us it was time for them to take her, they put her in a little plastic box and wheeled her out of the room as Daddy followed close behind. I of course fell asleep as they continued to work on me and woke up in the recovery room, without my precious baby, knowing she was across the bridge being looked at and worked over by many doctors and nurses who had also been waiting for her arrival for months now.
The next few days are a blur of being in my hospital room at the end of the hall at Harris and being wheeled through the tunnel to Cook Childrens to see my sweet daughter in her plastic box. We were told on Monday evening that she would have her first open heart surgery on Wednesday instead of Thursday.So on Tuesday the boys, my mom, and Amos's parents came to see Koralyn and wish her well on her journey. It was a surreal feeling wacthing my two strong boys look at their little sister through thick plastic. Asher seemed scared while Asa seemed unphased by it all and just excited to be here in this new place seeing his long awaited baby. Getting back to my room I welcomed my pain meds and hoped they would bring sleep, so I could escape the reality and gravity of what was coming in the morning.
Early Wednesday morning I was once again wheeled from my room over to Cook Childrens so we could say our goodbyes and prayers and watch our daughter being wheeled into the OR praying she would be wheeled out again alive and well. Dr. Tam her surgeon came out to talk to us and again explain what was going to take place and what the risks might be, while the nurses and techs were doing her two hour prep work getting her sedated and on bypass. Dr. Tam, being a kind man, but still a brillant heart surgeon at one point told us no matter how well he explains it we really have no idea what is actually taking place, we just wouldn't be able to wrap our minds around it unless we were in there watching, which of course is out of the question and would not be a welcome invitation even if given. We were told to go back to my room and wait for hourly calls and then our call to come back over to see her and hear the news of her surgery before she would be wheeled into picu. Luckily our gracious pastor Daniel Sweet and Cyndi King came to help us pass the hours talking about things outside of the hospital walls, even life as far away as India and Africa. It was a welcome and good distraction but every once in awhile I would think to myself how strange it was we were just sitting in my hospital room talking of such simple things while my baby was on bypass being cut open and worked on and stiched back together. Every time the phone rang, my heart jumped in fear of answering but with hope that the update would be a good one. Each time thankfully the update was indeed good, until hours later the call came to head back on over she would be wheeled out shortly after Dr. Tam came to speak with us about what had occured.
Amos and I along with Daniel and Cyndi sat in the small cardiac waiting room awaiting the doctor. This was the same waiting room we had sat in twice before while I was still pregnant awaiting her fetal echos. Every person that passed by the window made my heart jump until finally Dr. Tam opened the door with a smile on his face and informed us the surgery had gone quite well and took less time then planned and our little girl was doing very good! I have never heard such sweeter words in all my life and we now happily waiting for Koralyn to be wheeled by. When she was It was a happy time and I was able to kiss her sweet swollen face and tell her how proud of her we were. The team transporting her to the picu all proudly mentioned how well she did and was doing and how she was in the top 1% that did awesome! All wonderful words so welcomed by two scared parents. We knew God had answered our prayers and been so gracious to make this first step a successful one.
The next 24 hours went very well, again we heard she was doing excellent and the doctors and nurses were so happy with her progress and just how stable she was staying. I thought myself, maybe we would be the parents of the miracle Hypoplast baby that did insanely well and had no issues or problems! Then Thursday evening sitting alone in my hospital bed while Amos was down getting some dinner my cell phone rang and I recognized the number as Cook Childrens. My heart went into my throat as I answered and heard the nurse say my baby had just had a pulmonary crisis, at the end of explaining I asked just how bad the situation was and the nurse answered that if it had lasted any longer she would be calling us over to say our goodbyes. I hung up and made my way out of my bed and into the bathroom to ready myself for my ride across the bridge as soon as Amos got back. He walked in carrying his pizza and cookie to me sobbing by the door trying to put my slippers on and telling him their was a problem. I have never had such a quick wheelchair ride in all my life!! We got to her bedside along with the many nurses and doctors with concerned looks upon their faces and gentle words of explanation. I didn't completely lose it until I saw our Pastor standing by the picu door, then once again I just started bawling! At this point we weren't sure if she was going to make it much longer and I was just dumbfounded and at a loss for how to breath or cope or live in this moment. I told Daniel and Amos and anyone else standing near that I didn't know how to do this, how am I supposed to do this, I knew in that moment that God has a plan and knew about this, giving us our sweet Koralyn for a reason but said I didn't feel up to the burden or the challenge of this new road we were on. How was I supposed to love this baby that might very well be dying at this very moment. After Daniel told me my only job was to love her, just love her, the nurses told me sweetly that I should go back to my room to get some rest and take care of myself and take my meds. In other words crazy lady, you look like hell go lay down!! That night Amos stayed in the picu with our sweet baby and gave me frequent updates as I laid in my bed pleading with God to help us, help us, that is the simple prayer I repeated all night long, everytime I woke up and cried and was scared I just asked for help, for all of us in our little family, that is all I could muster. Koralyn had a few more smaller episodes but by morning seemed more stable.
The next 10 days were spent in the picu with a few more highs and lows. After celebrating her vent being taken out, she went into SVT minutes later and stayed that way pretty much throughout that day, resisting strong meds and even pacing wires until finally she leveled out that evening after they brought the big guns of SVT meds out! We were so thankful after that day, that she became more stable and had several good days and nights in a row with just very minor issues. We happily "graduated" to the nicu on Monday night April 23rd, the same day Amos had his first day back at work! We were sent off down the hall by all the sweet picu nurses and doctors with congrats, and good lucks, and she has done so well despite her setbacks!!
Since moving to the nicu she has continued to drop her oxygen saturation levels and has had to go back on oxygen. I was finally told this morning by Dr. Levy that they think this is due to a narrowing in the bottom of her shunt that was created during her first surgery.This is good and bad news, of course we would rather have no complications, but thankfully this is one they have seen before so it makes it "common." Also thankfully it can be repaired if need be, but not so great is the news that this repair can only be done by opening her back up since its on the bottom instead of the top of her shunt. Of course this would be a huge setback and that is the last thing we want for her. For now the plan is to watch and wait, if she can adjust to this and keep her sats up better on her own that will be great. Our goals are to slowly wean her off the oxygen she is on and eventually start feeding her from a bottle instead of the tube that is in her nose.If all of this happens we will see where we are at in three weeks and go from there. If she continues to drop her sats or gets worse or goes into crisis we will be doing a heart cath and probably be headed back to to OR opening her back up again. BUT, we will pray against this and hope and expect her situation to get better without more surgery at least until it is time for her 2nd. Unfortunately this means we are here for the long haul, which could mean weeks in the least and months or even until her 2nd surgery.
This ride is wild for sure, I have many emotions throughout each day. I am thankful for so many things, sad about several things, hopeful for many things. I miss my boys, my life, my house, my husband, but at the same time I am so thankful to be here with her, thankful for all the love, help, support, and prayers we have and continue to receive. I am most of all thankful in the knowledge that God made Koralyn and me and Amos and all the people who love us for this very time in our lives, he has a plan, he has a purpose he is good. On the hardest days this is what I hold onto, what I stand firm in, what gives me hope. I pray for many years with my sweet baby girl, that we will one day walk out of here back into the world not having to ever come back for more surgeries. That day is far off many years maybe, but I keep reminding myself this is a season in our lives, we can do it, we can do it. Just keep breathing and praying and hoping, we can do this.
"So do not fear, for I am with you, do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous hand." Isaiah 41:10
