My first real experience with the NICU came in the form of a phone call. I had only been out of the hospital 5 days when the phone rang. It was a physician I had never heard of and had no idea who she was. She told me Carter had a very serious blood infection and they would have to start antibiotics. We ran to the NICU to find out Carter had MRSA, which is scary superbug, found in every hospital. It was then that we began our undergrad studies of Neonatology and lots of Terminology. We learned terms like CRP (C-Reactive Protein), RBC (Red Blood Count), LP (Lumbar Puncture or more commonly known as Spinal Tap), and the list goes on and on. We got calm again fairly quickly knowing the antibiotics should do the trick. Carter was breathing on his own, only nasal cannula for a little extra O2 boost. Carter did have a little jaundice and was placed under the "bili" light. No big deal and he got some cool shades to wear. Seemed like we would breeze thru this...
The day our world crumbled... I remember like it was a moment ago. Wed night we were with Carter until midnight. Sean was supposed to go on a business trip the next morning. Carter was doing so well. Got over his infection, was on isolation due to the MRSA, which I grew to appreciate, breathing was great, gaining weight... until the phone rang at 3 am. I can only say God made sure I heard that phone. I had left my phone on vibrate and in my purse where it had fallen completely to the bottom. Then, I guess because I was so tired, I left my bag on the kitchen counter, which is completely on the other side of the house from our bedroom. I heard that phone vibrate like someone was holding it in my ear. As I ran across the house to get the phone, panic began to build. I missed the call. I had saved the NICU number so it showed on the phone. I frantically began trying to dial the number when another call came in. It was Dr. J. I could tell in his voice. Very slow to speak, he said to me, "has Sean left for his trip?" I replied no... he said we should come now...and even then it might be too late. Sean and I had been reading about all the things that came happen to preemies. It began to feel like a horror movie you are watching and you suddenly see yourself being chased by the ax murderer. We knew what NEC was. We had read the terrible stories. I put the phone down and woke Sean. We were on our way as we began to pray relentlessly. The streets were wet from all the sprinklers and I remember it was so hot. We were 20 minutes away, but seemed to get there in 2. Dr. J was waiting for us. Carter was still with us, but we didn't have any real information. I remember this because it seemed so strange. No reason, no real diagnosis, no certainty of what was about to happen. Wait and See was the understatement of the year. Sean and I waited in the "family" room. Not a room you really ever want to be in. Carter had to be intubated and his tiny little body was beginning to swell. His tummy like he was expecting twins. His color was between gray and grayer. My beautiful child lay practically lifeless. Every nurse, every RT at his bedside. We waited forever it seemed. Dr. L was the Dr coming on at 7. We loved all our doctors, but there is some connection with him. A surgeon was brought in to talk to us. He was a very kind man and I remember liking him instantly. He told us he wanted to do "exploratory" surgery to see what was going on with Carter's gut. I prayed over and over wishing it were anything but NEC. Dr. L went over the release and all I saw was the word ...death.. on the possible risks. How could I lose my child? Sean and I went in to see Carter one last time before the surgery began. The surgery was done in his room due to the emergency nature. I was so distraught. I don't even remember how Sean was. What I do remember and I will never forget... Dr. L leaned over and looked me in the eye and said to me... "Your baby is going to survive. I know it. He will survive". Those words have stayed with me everyday. Carter's surgery started at 5 p.m. We were told it could take anywhere from 30 minutes to several hours. 30 minutes was worst case scenario- no living bowel, close and make comfortable. Several hours meant several resections. Somewhere in the middle was our goal. The phone in the waiting room rang after 55 minutes. Not as close to the middle as we were hoping. It was our surgeon. Things went good. Only a small section had to be removed. Carter was doing ok. He survived. Carter had 21 cm of small intestine removed and an ostomy was created. For the next 8 weeks this is how things would "exit" Carter.
After Carter's initial surgery, it was a rough few weeks. Multiple line infections, tough times on the vent, little progress on feeds. He had his second surgery to reconnect the ostomy at the end of September. At that time, Dr. Lanoue went back thru the entire bowl and found 2 strictures, which were encasing some stool. That area was removed and another 5 cm was gone from Carter's total length. The first ostomy was reconnected and the surgery went well. It would be another 6 weeks of waiting before another reconnect surgery would be scheduled. Again we battled it out with line infections and that blasted vent. Carter and the vent have a love/hate relationship. Carter loves the ventilator and hates to get off it. We celebrated Halloween in the NICU. Carter was a horse and his buddy in the next room was a cowboy. It was fun, well, fun for us anyway. I think Carter thought we were a little weird. As Thanksgiving was approaching, we prepared to have his third surgery. They began feeding him again on Thanksgiving. We thought that was fitting. We celebrated Thanksgiving with an everyone bring their favorite dish dinner. It was a blessing to be with other families who weren't going to ask a bunch of questions with long answers about Carter. We missed our family, but we needed to be with Carter. He was completely reconnected the last week of November. Hopes of being home for Christmas danced in our heads. Our hopes were soon dashed as we realized we had a much longer road with TPN and feeds. Carter's gut just didn't work like it should and there was no reason and no way of making it work.
New Year came and went... with still no huge progress, we started thinking about moving Carter out of the NICU. Many of our nurses were worried about his development since he was six months old now. We made arrangements to move him to Our Children's House at Baylor. We knew pretty quick we could not stay there. The first day was chaos and the second day, Carter received an infusion of someone else's medication. We tryed to go back to the NICU with no luck. Once you are out, you are out. We tried several peds floors, but RSV was rampant everywhere. That is when we met Dr. G. He was the medical director of Our Children's House, but also on the board at Children's Medical Center. Not sure why it never occured to me to try Children's, maybe I didn't think Carter was sick enough to be there. We were trying to go home, not start over. It was a 3-5 week wait to get a bed on the GI floor, but Dr. Gelfand helped us out, by "bypassing" the normal procedures. Which would come back to haunt us, but looking back, it helped get us where we needed to be. When we got to Children's, I immediately informed by one of the doctors, that the head of the department was very upset that we were there. Sorry, what the hell was I supposed to do about it? Anyway, we stayed for a few weeks and then we started plans for discharge, yes discharge to home. Could not believe it. During all this planning, we were waiting to hear whether Carter would be "accepted" in to Short Gut program. Dr. M is the only short gut doctor in Dallas and of course the guy I pissed off. We left for home on Feb.26. Had a tough first week, started to settle in and then had a broviac leak. Took Carter to Med City, got the line repaired and headed back home. Another week at home, then infection caused by the line repair. Back to Children's, ER this time. All this time, we were still waiting to hear about the Short Gut Program. So, we have a GI issue and all this time, No GI DOC!!!! Funny huh??? While back in the ICU, we kept asking and asking for a decision. We finally got one. Carter would not be in the short gut program. WHAT??? How short do you have to do??? What a joke. It got worse, I had a conversation with Dr. M that was very less than professional and essentially because we didn't follow his rules, my son was being punished. It was then I made the call to Dr. Mark Puder. Dr. Puder told me to pack and get to Boston asap. We did and the story continues in the Omegaven journal. Of course, many of the funny and juicy details have been left out to conserve your eyes and my fingers. No matter, Boston is where we were supposed to be.
Things really began to look up for Carter once we got to Boston. We had the right phycian and the right drug to save his liver. Carter turned pink, began to smile and got more energy everyday. It was truly the miracle we had prayed for. I began to see my son's future in a positive way. But after only 5 weeks on Omegaven, an endoscopy was performed to determine why Carter's intestines had not become fully functional. His blood counts were low and after several biopsies were taken, he began to bleed out. First he started vomiting blood, then blood out of his ostomy. It was determined the biopsies had caused a major hematoma to form in his intestines. We tried for a week to stop the bleeding with no success. It was then we were approached about transplant to save his life. Carter was listed on a Saturday afternoon and we received our call the following Monday night. Tuesday morning, May 20, 2008, Carter received his Gift of Life with 5 new organs- a stomach, spleen, pancreas, liver and small bowel. He intially did well after transplant, but his damaged preemie lungs make his recovery very slow. We spent 6 months in the ICU in Boston. Sean and I lived in the ICU with him. Sean was able to work from his laptop 5 feet from Carter's bed. It was long and hard, filled with multiple infections and lung complications. Looking back, I don't know how we did it. But we did and on October 30, we brought Carter home for truly the first time in his life. He was 15 months old. He is our reason everyday. He amazes us in everyway possible and inspires us to be better. He has been home since then with only a few minor admissions and bumps. Everyday is a new adventure and challenge to keep him healthy all while giving him the most normal life possible. He is our Miracle.
That is Carter's story. My story has yet to be told and that is way I have started my "mommy blog". My journey has been filled with guilt and grief, depression and adjustments. While Carter is my joy, there are many emotions to fight through and uphill battles to be won. I would do every second of everyday all over again if I had too. He is worth every minute. But the time has come for me to work on how all of "this" has changed me, made me a different person and the overall effects of having a medically fragile child in our lives. I don't want anyone to ever think I have resentment or angst for my son. Just the opposite. He is the reason all the tears, all the hardship are worth it. This is my story about my life with him- the good, the bad and the ugly.
