David was born January 23, 2013. He was one month premature, but weighed in at a whopping 6lbs, 1oz and had absolutely zero issues from coming into the world one month early. For most parents, this is the happiest day of their life. This was my worst. My labor and delivery was absolute hell to say the least. And as soon as he was born, they took my sweet boy away from me for his first surgery.
We found out that David would be born with a birth defect called gastroschisis when I was 17 weeks pregnant. I spent hours reading every article, connecting with other gastro moms, and trying to mentally "prepare" for what was to come. We knew that as soon as he was born, before we could hold him, he would be taken away. Didn't make it any easier. So much for mental preparation.
His first surgery was successful. One of the doctors called me as I was waking up from the c-section, like I could remember what he said. He also called my husband and told him the surgery went well, and that they had to remove the small intestine that had been exposed because it was necrotic. He also said that it wasn't very much. Wonderful. That's great news. Our son is fine!
I had a lot of complications from the delivery, so for the next week I only got to see my David a few times. This killed me. The doctors told me I was fine, but I was constantly running a fever and they couldn't tell me why. There was no way I would take a chance going to see him and potentially giving him whatever I had. I would completely lose it to anyone who asked about David. Even if they just said "Aw, congrats! How is he?" I would start bawling uncontrollably. They were sorry they asked. After a week or so, I finally got to hold my David. THIS was the happiest day of my life. I now knew what all parents felt when their child was born. I had never loved something so much, and didn't even know it was possible. I held him for an hour, sobbing quietly the entire time. As I was leaving the NICU, my mom and aunt were waiting for me. They asked how it went and I told them I couldn't talk. We'd have to wait until we got to the car. When we got there, I started bawling again. I told them I finally got to hold my son, and that he held my hand. Happiest day of my life.
The nurses told us that David would soon be moving out of the NICU and into his own suite since he was doing so well. Yayyyy! No more NICU! As much as I wanted to spend time with David, the NICU is not an easy place to be. We kept asking every nurse and doctor we encountered how he was doing and what exactly was going on. They assured us that he is doing exceptionally well, but they didn't know the exact details because they weren't HIS doctor (that we still hadn't met). From everything I had read about gastroschisis, things didn't really make much sense. They said everything was great, so it must be. We continued on being blissfully ignorant.
David's new suite was beautiful, we called it his penthouse. It had two flat-screen TV's, a giant crib for him, couch for us, a bathroom with a shower, and an amazing view of the city. We finally got to spend time with our son! We were finally a little family! We started feeding him, holding him, and learning how to change his ostomy bag. We continued asking every nurse/doctor what was going on, and they continued to assure us that everything was great. But they weren't his doctor. Still hadn't met the man, and I was beginning to wonder if he really existed as almost two weeks had gone by. Nurses started talking about when he could come home. Our son is fine!
Two weeks had gone by, and as I was coming out of the bathroom there was a doctor standing by David's crib. He asked me if Matt and I had been trained how to care for his central line and his ostomy yet. No, we hadn't. Who are you? It was HIS doctor! He exists! I told him I had a lot of questions for him, so let's just start from the beginning. HIS doctor then proceeded to tell me that they had removed about 90% of his bowel with the initial surgery, that he now had a very rare disease called Short Bowel Syndrome, and that we are looking at a bowel transplant. He believed that David only had about 30cms of his small intestine left. As soon as we learn how to care for these things we could go home. What the f*$#?! To say that a million thoughts were running through my mind would be a complete understatement. I quickly gathered myself, and asked for more information. I didn't hear a single word he said. Our son is NOT fine.
My husband had gone back to work, and was 3 1/2 hours away. I called him to tell him I finally met David's doctor and what he had said. How the hell could TWO weeks have gone by and we knew NONE of this. And it was up to our learning as to when he could come home. Why was this never ONCE mentioned before, and why had no one started our training process. I was a complete wreck. I let the nurse know that this was the first that we had heard any of this, and we were not happy. They finally scheduled his care conference where we would learn exactly what was going on. At his care conference, we walked into a cold room with a long table. At the table sat nurses, doctors, surgeons, pharmacists, social workers, and anyone else involved in David's care. We sat down at the head of the table and waited for it to begin. That's not intimidating at all. The conference lasted about an hour, and we finally learned exactly what was going on. Finally. I recorded the whole thing so I could go back and comprehend everything we were told. Throughout the entire conference, the social workers kept staring at me, just waiting for the sign of a breakdown. Not me, I am a strong woman and we will get through this (repeat 10x's in my head).
Over the next week, we finally started learning how to care for his special needs. We mastered the dressing change, changing his ostomy bag, TPN bag changes, etc. Things were different now. We were on a mission to get our son home. Finally. And yet I had never felt so empty. I loved this beautiful boy more than life itself, so why was I afraid to hold him now? I promised myself that I would never let him see me cry, to always be strong for him. I took care of his needs mindlessly as the fear was overtaking me. I didn't want to get too close to my son, there's a chance I could lose him.
The doctors were extremely pleased with our learning how to care for his needs in such a short amount of time. They said we could take him HOME!
Discharge day finally arrived. I was so excited and also scared shitless. I got everything packed up and loaded into the car. We had accumulated quite a bit in a month! Once everything was ready, I went back up to David's room to give him a bath and get him ready for the big trip home. He didn't like baths, I knew this. As soon as I started his sponge bath he started screaming. This was normal. I looked down at his stoma, this was not normal. It was just an eensy bit larger than usual. I called our nurse to have her check it out. She agreed, and called for a doctor to take a look. Within five minutes, his stoma had completely prolapsed. I was now looking at about six centimeters of the inside of my son's small intestine. And he is screaming because he is in so much pain. I spent the next hour trying to comfort him and calm him down. Unsuccessfully I might add. The doctor was pouring sugar on it to try to absorb some of the water and reduce the swelling. He was attempting to push it back in by hand. I needed a quick break. This was too much for me to handle. I ran down to the lobby and explained to the grandparents that we would not be going home today. As I was inhaling a quick cigarette, the nurse called me and said I needed to come back immediately, they might have to rush him to surgery. I RAN the entire way back to his room, I am not a runner. My mama gene finally kicked in. I prayed to a god that I don't believe in. Please let him be okay. All of my fears about the future didn't matter anymore. He was my son, my sweet boy, and he is going to be okay. No matter what.
When I got to his room, they had successfully pushed it back in. They also gave him morphine so he wouldn't be in any more pain. The doctor wasn't sure why it happened, and said that it's very rare. A few more doctors said the same thing. I was so thankful that it happened while we were still at the hospital, since we were only a few short hours away from being discharged. I unpacked the car. I voiced my concern about it prolapsing again. I told them that anytime he would cry, I would freak out. I asked if we could go ahead with his takedown surgery, since they were already planning to do it in a month or so. They said no. They were confident that it wouldn't happen again, and said we could go home in the next day or two. The next day I attempted the dreaded bath time again. He started to prolapse again. Luckily, this time it was a very small amount. His doctor scheduled the ostomy takedown for the next morning. Thank you.
I had been staying with David and just sleeping on the pull-out couch. With all the monitors beeping, and nurses coming in and out all night it was very hard to get actual sleep. I decided to stay at the Ronald McDonald house that night. Feeling like the worst mother ever, I left around 9 pm to get some sleep. I told the nurse to call if anything happened. Around midnight my phone started ringing. Oh no. He had prolapsed again, and this time it wasn't going back in. They were taking him to surgery as soon as I got there.
I cried the whole way to the hospital. His nurse and I took him to the OR and I signed the consent forms. His doctor commented that David was impatient like his mother. This would have been funny if I liked him. I told my sweet boy how much his mama loved him, and they wheeled him away. I felt so guilty because I didn't kiss him, but I knew that if I did I would lose it. And I will not cry in front of my strong son.
A few hours later (which seemed like an eternity), and 10 cups of coffee later, his doctor finally called. The surgery went well and I could go see David, but he also had some bad news. They initially thought he had about 30 centimeters of his small intestine. After getting in there, they discovered he only has about 15 cms.
And again, seeing him laying there was too much for me to handle. But this time I did. I had to. He is the strongest, sweetest little man in the world, and I am lucky to be his mama. His lung had collapsed from the surgery, but after a few treatments went back to normal. After two days he pooped! The surgery worked! I was so happy to change that first poopy diaper. We could go HOME!
I packed everything up again and loaded the car. And we went HOME!
We've been home almost two months now. I love David more and more every day. My initial fears of getting too close to him are completely gone, and have been since he prolapsed the first time. He's my sunshine.
Matt and I have grown closer together and I love him more every day. I'm so lucky to have such an amazing man, and I would be a wreck without him. He is the glue that holds me together on my bad days, and always manages to make me smile. From watching him change David's TPN bag so carefully, to playing air guitar with him, I know that he is the best daddy in the world. And if David grows up to be just like him, I would be one proud mama.
I still have some bad days, and I doubt that will change. I have a hard time feeling empathy for people with healthy children when they complain about a minor cold. I understand that each child means the world to their mother, but I feel like I can't relate. Or especially when parents are complaining about their child being a brat. Be thankful and enjoy every single moment. I feel like a terrible person for saying that, but it's the truth. People have commented about the transplant process saying "isn't it sad to think about what has to happen for him to get a transplant?" Yes it is, and please don't remind me. I know that if he needs a transplant a child has to die. I know they don't mean anything bad, but it's still hard to hear, and please think before you speak. And we will do whatever is necessary to ensure David has a long, healthy, happy and normal life. We know that whatever surgery the future may bring, he is one tough cookie and everything will be okay.
David is extremely healthy, minus his Short Bowel Syndrome. He is currently 100% dependent on his TPN, as he can't absorb many nutrients on his own, but he also gets 14mLs of breast milk every three hours. We have had zero issues with him tolerating the milk, yay! He now weighs 9 lbs and 13 oz, and is gaining about 6 ounces a week. We had our first follow-up with one of his surgeons and he was amazed with David's progress.
David is seriously the sweetest, happiest baby in the world. He has been sleeping through the night since we brought him home, and stays awake almost all day! He only naps about 2-3 hours, so we get a lot of quality time with him. He loves to smile and laugh, and I love seeing his personality grow each day. He still hates bath time though. Yesterday I asked when he would like his bath, and he snapped his head towards me, glared, and threw his fist in the air to protest.
And, I've become "that" mom and entered him into the Parent's magazine Cover Baby Contest. Vote for my David! It just takes a second and would make us oh so happy :)
VOTE FOR MY DAVID HERE!
And, I've become "that" mom and entered him into the Parent's magazine Cover Baby Contest. Vote for my David! It just takes a second and would make us oh so happy :)
VOTE FOR MY DAVID HERE!
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