Silas Special Heart has quite a story! Check the comments for a link :) My husband and I were so happy to find out we were having a baby boy together after a very hard pregnancy and our baby was expected to be making his appearance in February 2013. At 6pm on New Year’s Eve everything took a turn. Upon standing up after sitting on our bed a gush of blood came followed by very quick and hard contractions. I was immediately taken to our hospital and called our doctor enroute. They started magnesium to stop labor as I was only 32 weeks along and our baby was on the small side and gave me steroid shots to make his lungs mature just in case he was for sure coming, the abruption clotted and healed itself. While still in the hospital a week for observation I went into preterm labor again at 33 weeks this time they stopped it with procardia meds. They did ultrasound, and we were then sent to a specialist and were not prepared for the news to follow. We had known our baby was on small side before but attributed it on my severe and constant morning sickness but after long ultrasounds and multiple techs and drs coming and going we were informed that was not the case at all. They said our baby was roughly 2.5 lbs which was under 5% percentile. They told is that instead of a three vessel umbilical cord our baby had only two. They also told us news no mother or father wants to hear. Our precious baby boy has a congenital heart defect called tetralogy of fallot also known as blue baby syndrome. It is a combo of 4 defects which all in all complicate the blood flow to and from and between the heart and lungs thus causing some babies to turn blue at times. They said we would now need to go to St. Louis for further evaluation and that if I went into labor or had him here in our town which is two hours away from that we would have to be flight lined to St. Louis because our neonatal units here were not efficient enough for level of care our baby would need. I was then sent home on strict bed rest, medications and appointment to go there when I was 36 weeks. Weeks rolled by, we went to appointment which was an all day event, just doctor after doctor. Finally we were told I was needing to be admitted because my amniotic levels were low. I checked in at 6pm. They made me comfy and said I would not be given the medications to stop my labor and if he came then we would be in the right place. Hours rolled by, around midnight my contractions started, I progressed quickly to 4cm by 2am and was in severe pain, and they came and gave me Demerol. Within minutes Silas’ heart rate plummeted to 40’s and there was blood everywhere, I had a second placenta abruption and my baby wasn’t doing well. I was rushed to the OR for crash csection, and was asleep within minutes. Silas Michael Lawson came into this world at 2:59am at 3lbs and 15oz and 16 3/4in long, he wasn’t crying but he was fine. I didn’t get to hold my baby like most moms get too. When I woke up I only got to see him for 10 minutes and watch him be sent over to another hospital. The next day I was permitted a pass to go and see my newborn baby boy. I was shocked, I cried, I was happy he was doing ok but was told Silas had other problems besides his heart defect. He was jaundiced so they placed him under billirubin light. They then told us our baby also has hypospadius, partial bladder outlet obstruction and hydronephroxis of the right kidney with posterior uretharal valves. We were told our baby was going to need several surgeries and special came before and after he went home. Silas had his first surgery at 20 days old, he was given a vesicostomy to help the urine pass more freely from his bladder. After a month in the NICU at Cardinal Glennon in St. Louis he was finally ready to come home. Silas was seen weekly then every two weeks. All was going good at home; Silas loves his three sisters and bother!! In June 2013 we were told Silas was in heart failure. We were scared, his cardiologist and cardiothorasic surgeon told us he needed a full repair on his heart soon but would like him to be close to 12lbs. Over the summer Silas’ appetite decreased his weight gain slowly climbed but by the end of August we could not wait any longer. On September 6th Silas went in for his open heart surgery, instead of full repair they did a partial. They discovered he has not one but 3 holes in his heart! They patched two and said the tiny one would close on its own. They also removed some of the thickened muscle from his lower ventricles. They did not repair his aorta or pulmonary artery. Silas went thru a hard healing process and was sent home 6 days after his surgery. Home life has been rough and up and down. Silas got his first tooth the day he was discharged, plus in pain from recovery. He got a cold a few weeks after, then pink eye, then an abscess, and then even a second tooth! His days and nights were up and down but eventually things settled and now we have woes of teething and hospital bills. Since his surgery Silas was also diagnosed with new conditions causing a flat and uneven spot on his head, and would require a helmet and was most likely from being in the NICU and developmentally behind. He still has a few surgeries to go thru to correct the hypospadius, remove the extra values outside his bladder and close his vesicostomy. Today, Silas is doing very well, but there are concerns of his narrowed pulmonary artery now though since he’s had so much weight gain, he’s had a massive growth spurt since his surgery! I will do my best to keep this information updated. We appreciate and are so thankful for all the help and support we have gotten from everyone along the way and god bless you all!
Posted on: Thu, 31 Oct 2013 18:26:50 +0000
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