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After successfully carrying and delivering healthy triplet boys, Josh (my hubby) and I had not decided if we were going to have more children….but we knew for sure we would wait a while. Well, God had other plans…somehow I got pregnant! Let me clarify, I know how one becomes pregnant…but in this case I am not sure how it happened. You see not only were we “protected” but with two year old triplets, mom and dad "time" doesn’t happen very often. But none the less I was pregnant! I didn’t really know what to think at first. I had a lot of emotions, I was shocked and confused…and then panic began to set in. I had just felt like I was regaining some control…things were finally getting easier with the boys, and a baby, well that was going to definitely add to the drama.
After it all sunk in I begin to get really excited about having just one baby and getting to know what it was like to get to sit and rock and really enjoy the baby stage, (I didn’t really get to do that with the boys…there was always another baby to feed)... We found out that we were indeed having just one baby and it was a boy and we decided on the name Gabe, and I often referred to him as my “easy baby”.
On June 18, 2008 I had a repeat c-section and Gabriel Dale Sims “GABE” was born weighing in at 5lbs 13 oz. He did a lot of screaming in that first 15 minutes. They brought him over to me and told me that he was breathing a little fast and they wanted to take him into NICU, I was like “sure”… I obviously had experienced NICU life with the boys, and I wasn’t concerned, after all he was going to be my “easy baby”….
I got to see him a few hours later. He was intubated but only because they wanted to give him surfactant, which is a substance found in the lungs to help keep them open. They thought his lungs were just a little immature and after a few days he would be fine. He was extubated the next night, and although his breathing was still quite fast I was assured that it would just take a little bit of time. Over the next week things didn’t improve, but they didn’t much worse either. They continued to check other possible causes, but everything led back to just having slightly immature lungs. He was treated for infection proactively and we continued to wait. At about two weeks old with no real changes other test and scans were performed. He had several echos and at first nothing out of the ordinary was discovered….but on a fourth echo they discovered that he had PPHN (Persistent pulmonary hypertension of the newborn), however there was no explanation as to why. Several days later Gabe began to tire out….he had been breathing much faster than normal for three weeks at this point; it was like he had been running a marathon for that entire time. At this point he was intubated again to “give him a rest”. After a few days of letting him rest they began to try and wean him. Unfortunately Gabe went the other direction with his vent support and ended up maxed out on the vent. At this point he was transferred to UAB.
Upon being admitted at UAB he was seen by the neonatologist and cardiologist, there were still a lot of unanswered questions, but while the debate raged on, Gabe continued to deteriate. After a few days the decision to do another scan with contrast was made, although many were afraid Gabe would not make the trip to CT. I got to hold Gabe for a few minutes, in those few minutes I tried to absorb everything about him, I told him how much I loved him as I prayed and cried over his body.
Thank God he did make it back and the test proved very informative. After the scan they were able to put a 3D model together of his heart and lungs and were able to see things they were unable to see on echo and x-ray. Because of this test Gabe was diagnosed with a very rare congenital heart defect known as Scimitar Syndrome. The prognosis varies widely with scimitar. Some children aren’t even diagnosed until three or four, while others like Gabe have immediate issues.
Because Scimitar is so rare and so varying in degrees there are limited case studies and resources on management of care. I was very confident in the doctors at UAB and I knew they were exhausting all avenues of treatment. It was decided that Gabe needed to go to Cath Lab to truly see the anatomy and get a better degree of his PPHN. Upon leaving for that surgery I again was warned that because of his current state he was at a greater risk of not making it through. God once again watched over Gabe and the surgeons and he made it back, but the news this time was not what we had hoped. Gabe’s PPHN was greater than what they had originally believed. While in surgery they were able to coil off some of his collateral arties, however we were told only time would tell if it would be considered successful.
Over the next few weeks there were slight changes with Gabe. He continued to be critically ill and was maxed out on ventilator support. He was on numerous drugs and was being sedated most of the time. I continued to stay with Gabe around the clock, while Josh and the boys continued their routines at home. It was extremely difficult being away from them, but Gabe needed me, and with things changing so quickly from day to day I had to be there to stand in the gap of information.
After several weeks the decision was made to take Gabe back to cath lab again to see if there had been any change in is pulmonary pressures even though there didn’t seem to be any. After this cath Gabe became very sick. I was told he wasn’t going to make it through the night. That night was one of the longest of my life. Gabe once again pulled through to the amazement of everyone. The decision was made that Gabe’s only chance was open heart surgery. The hope was that going in and repairing the veins would alleviate the PPHN and help his lungs to heal.
After months of going back and forth Gabe had open heart surgery on October 6, 2008. Letting him go into that OR that morning was the easiest thing I had done so far….which I know sounds crazy, but God was holding me so tightly in his hand, all I could feel was peace. My assurance that God was in control and he had Gabe’s life in his hands this whole time, no matter what day of surgery, or what surgeon would perform it, it was all taken care gave me the freedom to sit in that waiting room with no anxiety, no fear and most of all the hope that he would come out without complication. God granted all of those hopes and Gabe came out of surgery so much better than anyway had anticipated. Now, don’t get me wrong it was hard to see him post opt. His chest had been left open in case the needed to go back in and he had tubes, drains and wires everywhere, but he was alive and he actually began to wean on the vent almost immediately. Things continued to go smoothly, he responded well to most everything they did. He went through the whole month of October without any major setbacks.
In November he did however get an infection. From that point on things started going down hill. We were told that he had a possible stroke and that he had a huge blood clot in his heart. He also had two clots in his liver; one in his hepatic vein and one in the portal vein, which at his point had also caused hypertension in his liver. Gabe saw gastro specialist who said he would need a liver transplant, there had already been questions raised as to if he would need a lung transplant as well. With all of this stacked against him there were days when things seemed hopeless, but we never gave up hope for Gabe.
On Christmas night Gabe took his last breaths in my arms as he listed to the song that had been written about him and for him….looking back I know that God had planned all along that Gabe would come home to him on Christmas night. That he would forever be our Christmas miracle, even though it wasn’t the miracle that I would have wished for, I am blessed to have known this precious baby boy, and honored to be his mommy.
I wish I could explain everything that happened during those six months, I wish I could tell you about all his many IV’s and blood draws, about his NG, OG, and TP tubes, about all the scans, x-rays, test and drugs he was on, about the numerous fevers and work ups he had, about all meetings, specialist and about all the case studies I poured through….and while all of that is part of his story, what I want you to know more than anything is the true story lies within what gave to everyone who knew him. He gave us hope. Hope for living this life more courageously, and hope for what there is to come.
Our hope is that you too will live life more courageously and that the eternal hope that only God can give will be yours!
Thank you for your interest in Gabe’s life and story, may God bless you all!
Amy
Gabe’s mommy
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Gabe's Story
