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Dec 16, 2017 Latest post:
Dec 26, 2017
UPDATE on December 13th 2017 bella got diagnosed with Thyroid cancer. We have never used this site very much but will be this time to have a place for people to be informed about what is happening. Being pregnant is the most wonderful thing in the world. So full of life inside you and you cannot wait to meet the tiny being that has been growing there for all this time. My life changed forever when I had Bella, The night I went into labor on Feb 19th 2007 I was so happy because I was at the “ready for this baby to come out point” and I was admitted late at night. I labored for around 12 hours and had Bella around the same time I had, had her older brother Alix at 11am on February 20th, 2007. We did not know yet that Bella had any problems yet. She scored high on her APGAR test and was pink and screaming like any other baby weighing in at 7 lbs 9oz. I loved her from the first moment I saw her on the sonogram and now I get to meet this baby who had my heart. The first day was bliss she slept a lot and got checked out by the pediatrician who gave her the good to go, however that night Isabella was not feeding right, and all of a sudden started choking on mucus and turned blue, I flipped her over on my arm and started patting her back while my mother ran for the nurse. They took her to the nursery to suction her out thinking it was from the delivery things just hadn’t cleared all the way. When she brought her back the night nurse told us that she heard something with the stethoscope and to ask the pediatrician to check it out the next day. So day 2 in my blessings life, so her came in to check on her and we mentioned what the night nurse had heard, so she listened and then didn’t say anything and left. My mother Lori who was the only one with me, as Andre Bella’s dad was in Georgia getting ready for a deployment. Left me to go to the house for some things. While she was gone the pediatrician came back in and said they would like to do an ECHO on her which I would come to know those well I didn’t know what it was at first, so she explained it was like a sonogram of her heart, that they think she had a small VSD the would most likely close in a day or so but wanted to check it out. So off they went with Bella to the nursery. Around 30 mins later a nurse came in and said something was wrong with Bella’s heart severely wrong but she didn’t tell me exactly what. Then told me they were discharging both Bella and I from the hospital so when they transferred her to children’s that I could go too. I at that point to put it lightly started to panic. I called my mother crying telling her something was wrong and to come up now as they were transferring her. My mom was up within 10 mins. Then I got my next heart breaking news. While they were getting her ready for transfer she had stopped breathing and they had to intubate her. So the last I saw of her for hours was them wheeling her out to the ambulance fully intubated. I called Andre and told him all I knew by the drive over I had the name of what she had but still no idea what that meant. tetralogy of the fallot with pulmonary atresia. So I call everyone I can think of from my dad, uncle, aunts, grandmother, in laws. I asked everyone to meet me over at the children’s ICU because we thought we were going to loose her. My heart was breaking the whole time I was only 20 years old with an almost 2 year old and a baby I wasn’t eve sure I was going to get to know. My mind was racing and I couldn’t stop it all the while I was so sick, and in pain from just giving birth the day before. When we got the hospital I went straight to the ICU where they told us the doctors were working on her because she was not stable and we had to wait. As we waited more of the family gathered for support and to see her if something had happened. We sat there quiet for at least 2 hours probably more. Then finally a cardiologist Dr. Wong came out and gave us the talk we had been waiting for. “Bella” he said “has something called tetralogy of the fallot with pulmonary atresia” then went into detail of what that entailed he said “ This heart defect consists of 5 heart defects, along with that her anatomy of her heart was not put together right.” Or he used the analogy “ If you think of it like a plumber her tubes just don’t go to the right places”
At the time they thought she had no left pulmonary artery. He stopped there and gave me a chance to go see her, as that was a lot of information to process all at once. When I went in to see her she looked so sad I just cried, my mom went in with me and its just very hard to see such a little baby fully intubated with wires everywhere. I spent that night with my mom in the waiting room as there were no place for parents to sleep at that hospital. I also was pumping every few hours because I wanted to nurse her when she got out. The days passed like a blur, I didn’t even leave to shower till after a week and even that was hard to pry me away from her side. I was deathly afraid of leaving her, that something would happen. She was in the ICU for 15 days and went from 7 lbs 9 oz down to 6 lbs 15 oz by the time we left. I was so happy to be taking her home. Well to my parents home. I was able to breast-feed and she was more than happy too, though she did get tired very fast. We started to see the cardiologist every week for a while, where they discovered a left PA it was just in the wrong place but was functioning. He also told us within those weeks that she would require open heart surgery, but our goal right now was to “get her fat” as weight gain was going to be her biggest defense for doing well after her surgery. Within the next 2 months we moved from Georgia where her dad was stationed, to San Antonio. By May I had stopped nursing because she was not gaining enough weight and had to be supplemented with strong formula, had 2 heart caths and more cardio, dr visits than I could hope to remember. We were getting close to bellas 5 month mark, when she started getting sick out of no where. All of a sudden 104.0 fevers, which made frequenting the ER a normal for us. In July right after the 9th I took bella in for breathing issues, she was seen and sent home. The next day Had to be one of the worst days I wish I could shake from my head. I woke up went straight into the kitchen and started making bella a bottle. Walked over to her bed where I found bella pale, limp, non responsive, breathing so shallow you could hardly see. I woke up her dad and we jumped in the car and took her to the ER again. Calling her cardiologist on the way. He met us at the entrance and told us to take her to Santa rosa childrens. We rushed her over and they took her straight into the ICU. They noticed she was running a fever and decided to do a spinal tap to make sure it was not meningitis. So I am watching all these doctors and nurses surround my baby holding her down and poking her in the back with a needle. Thankfully it was not meningitis. They admitted her and decided it was time for her surgery. They were trying to wait as long as possible but wanted to watch her during this time because she was still under what they wanted for an operation. I spent the next month by her side at the hospital every day. Occasionally going home but not for long. The day came for surgery, and with the support of the entire family including, My mom, dad, sister, son, uncle mike, aunt Kathy, aunt Geri, Cousin Stacy, Father in law, mother in law, sister in law, and husband. I let the doctors take her from my arms back through the closed doors where her fate would lay in the surgeons and Gods hands. I broke down as any mom would do when handing their baby over knowing they may never see them alive again. It was a very long day with little talking. All her reports were good and she pulled through with flying colors Though a discovery was made during this surgery, that bella had no thymus gland and it was possible she had something called Di George syndrome. It killed me to see her after in ICU she was swollen her face, and hands and everything, was intubated, and the cut on her chest I was not prepared for. My father had so much trouble going in to see her, no baby should have to go through what she did I believe. I was however excited and though we had 10 more days in the hospital it was almost time to get out of there. By the 24th of august we were released so happy to have her home and work on being a family. Things were going well her first week check up went fine, though I almost passed out watching them take out stitches. We were enjoying having her home and fixed or so we thought. Her next appointment at the end of September did not go so well. They looked at the conduit piece they put in and told us it was enlarged and that they wanted to see her again in a week, I thought here we go again. We went back a week later and it was even larger. They told us they had only seen this happen a handful of times but they had to go back in and remove it and replace it with a different one. My heart sank and I did what I normally do called mom and told her, she broke down at work on the phone knowing bella was going in again. They admitted her right away so they could keep track of how things were looking and she stayed till they end of October. On the 30th of October the day before Halloween I once again handed my baby over into the hands of others. This was bellas 2nd open heart surgery. Again everything went well and she stayed another week and a half in the hospital and they discharged her. From October till thanksgiving bella had a lot of trouble keeping anything down, or even in. We still don’t know what the problem was but at 9 months only weighing 10 lbs we were in trouble. The Doctors taught me how to drop a feeding tube and she was tube fed till January. She also had some oxygen problems, so she was on oxygen 24/7. Our lives consisted of a confused 2 1/2yr old, a 9 month old with a feeding tube, and oxygen. And a lot of debt. Life gets hard and you can either adapt and change or fall behind. So adapt and change I did. As did Alix. Times fly by when there is so much going on, we were still waiting on the test to come back about the Di George syndrome. Which shortly after Christmas we found out she did have Digeorge syndrome, which is a genetic disorder, that is rarely passed down unless you were a carrier. Which neither of us were. In January they placed a feeding tube in her belly since she kept pulling out the one in her nose. She celebrated her birthday in February at 12 lbs happy go lucky. The most amazing thing that I noticed is how happy she was, not colicky or fussy, just content to be here. As we struggled with bills, a new house, children, we also juggled doctor appointments. A week after Bella turned 1 André set off on a deployment, leaving me the kiddos and nannying to pay bills. I cannot even tell you how hard it was to manage all of that but what I can say is while he was gone for 4 months we went to the ER over 20 times As she was sick the whole time he was gone oh and she got bigger a lot bigger up to 20 lbs. We found out a week before he got back that she has kidney reflux which was causing constant infections in her kidneys and there for she got sick with whatever was out there as soon as we took her off an antibiotic. Also that week I had taken bella to the cardiologist where noticed some bad flow and they scheduled a cath on June 25th so we made it through a home coming and everything, to the cath. I hated any news by this point. We took her to the cath, and when they were done dr porche came out and told us they found a pocket AKA an aneurysm off the valve from stitching that had given under the pressure, and that if in 2 weeks it was any bigger she would have emergency surgery. I dreaded those 2 weeks afraid something would happen. I did what all parents do when dr don’t give all the information and did my own research only to find if an aneurysm in the chest bursts there is less than 20% survival rate and that’s if it happens in the hospital. I was on edge. We took her back in 2 weeks later to find out it was Way bigger than it was 2 weeks ago and like a flash we were back in the Hospital our home away from home. They took her back and removed the aneurysm. They told us after when they opened her chest it was right there, was about the size of a walnut and was so thin you could see through it. Not what I needed to know. She was in the hospital from Tuesday when she had the surgery to Friday when she got released very short. Week after her surgery she broke out in hives/welts. She was rejecting her valve but was treated and things stopped and she is doing very well now. Isabella is now 22 months old, walking talking, playing. I was so lucky to have the doctors and support from mended hearts we have. This hit us financially really hard, mind you her dad is in the military so insurance wise we were ok. But gas to and from the hospital, food at the hospital, trying to keep a family going during all of this. Our family like many as I have heard couldn’t stand up through all the trials, and I now have bella and alix on my own, working full time, watching them, and trying to make it on my own in a bad economy. This puts strains on more than just the parents, Our families have done so much to just try to make everything work. I cried the whole time writing this thinking of things I try not to. Dreading finding her like that morning when she was 5 months old. I live everyday with the fear that it may be my last with her. I never thought as a 22 year old I would have had to grow up so fast but I did. I have dealt with in the past 2 years most people would hope to never ever have to go through. Isabella is stronger than I could ever hope to be. I would have given up by now. It amazes me in writing about our lives, could really make that much of a difference for us but it can. People ask me how do I manage, and I manage because I have to, I would not give it up and I don’t have a choice. These kids mean the world to me and Mended hearts has shown us so much love and compassion they are our other family. And we love everyone of them very much.