Happy Valentine's Day!!!!
We were elated to be home from the hospital after 3 long weeks following Tristan's birth. the scariest thing about being home was it was just us. We knew Tristan was healthy and that he was stable to come home. We bought an Angel Care monitor that would make noise if he stopped breathing. That was enough comfort for us. Other than Scott sleeping on the floor in his room the 1st few nights. Tristan was on a very stricked feeding schedule. He was to have 2.5 oz of fortified formula (an extra half of scoop per ounce) every 2.5 hours even at night. This was so he wold continue to gain weight. he left the hospital only about 3 ounces under birth weight which wasn't too bad. Trying to get on a schedule where both Scott and I could get some sleep was a bit difficult. We would alternate feds so we would at least get 5 hours of sleep. Not that it really happened because for a while when it was time to get up we were both up checking to make sure he was in fact OK. After a little while we got into a routine at night. I was busy with follow up appointments and trying to find a pediatrician who knew what HLHS was. After some help from our Cardiologist we found a wonderful one. We saw her every week for awhile then went to every 2 weeks. After about 3 weeks we noticed that Tristan wasn't acting right, he was screaming inconsolably. I called my mom because Scott was at work. I put him in the bath and notices he has what looked like a pimple but bigger that was ready to pop at the top of his incision that was completely healed. We were 5 weeks out of surgery I mean i would have thought it would have shown up soon. So I called Scott, who came home from work. I was immediately on the phone with the NP of Cardiothoracic Surgery and she said bring him in there is a bed waiting for me. It was Mother's Day weekend. We arrived straight to the unit to find a Surgeon waiting for us. He took one look at it and said, "its a staph infection he needs IV antibiotics for 3 days then he can go home on oral ones.
So the Surgeon came and opened the spot and cleaned it out. All of that was not much fun even morphine didn't help the pain Tristan went through. So here we were only 3 weeks after leaving the hospital, back in for 4 days. I thought we have got to have a plan if we are going to be in and out like this. They told us we might but after how well he did after his 1st surgery i was in denial. Tristan was release 2 days after Mother's Day on Daddy's birthday. We were happy to arrive home to cake and balloons!!! It was May 15! We got back into our routine and all was well. Tristan was getting ready to be at Mommy and Daddy's wedding as we were getting married on the 15th of June. All was well for 2 months. Tristan continued to can an ounce a day and started to act like a "normal" baby would. I use "normal" very loosely as he is our norm. Doctors visits every week, Cardiologist visits every few weeks was just part of our routine. It was July and my parents were getting ready to move to Florida. I had planned a surprise going/35th anniversary party on the 21st for them. Old childhood friends and family were all coming.
Tristan's 1st family outing was to Celebrate my cousin Kevin's High School Graduation. He was passed around and played with. He had a great time. Everyone wanted to see him, hold him and hear his story again. We left there exhausted but it was great to have Tristan out and not stuck at home. We tried to get out to the mall and walk a few times a week. I refused to be confined to my house because he was doing so well. I was though very protective of people wanting to touch the "cute baby" but it was a lot fun. We were woken one morning with terrible news. My cousin who just graduated was killed by a drunk driver. So we spent more time with the family. We took Tristan with us to the viewing and the funeral as he was just as much a part of the family as everyone else. The thing that got me through this terrible tragedy was that now Tristan had(has) his very own Guardian Angel!!! I am sadden at the loss of my cousin and still think about him often but we are over joyed to share with Tristan all the fun things Kevin did. Kevin truly has helped us get through this road with Tristan.
On the July 20th Tristan had a different plan for us. He was turning blue around the mouth. We took him to the pediatrician who immediately sent us to CNMC because he was pulling and trying to catch his breathe.
We were admitted for tacypnea(labored breathing). It was suppose to be a short stay but it turned out to be a week long. Scott stayed with Tristan on Saturday as I had over 50 people coming to my parents house for a party. While Tristan was in the ER he was given a rectal temp...something I did twice a day to keep an eye on his temp because if it got above 100.2 we were to call CNMC. But something went wrong in the ER. They did it and he about jumped off the exam table. So we knew it was uncomfortable but didn't know it would eventually keep him in the hospital for 7 days. After they got his breathing under control he started having blood in his stool. Everyone was in to see us, from the Nutritionist to the GI docs all to tell me he had developed a milk allergy. Um...I don't think so. I fought it tooth and nail. We didn't come into the hospital for a bloody stool it happened after he got here so lets see what the cause could have been. I started writing things down that were different. 1st off he got poked in the butt, 2nd off he was on hospital fortified formula. Other than that nothing was really all that different besides sleeping in a different bed, having the alarms hooked all...all things that wouldn't cause blood in his stool. So i spoke with the nutritionist and she wanted to change his formula. I said no let me make his bottles and see what happens. I finally got to talk to the GI Dr and being 4 months old and just developing a milk allergy doesn't usually happen. I spoke with the Cardiologist and made it very clear that i wanted to file a complaint with someone about this and that i wasn't changing his formula until it was noted that me making it didn't help. Well guess what? I started making his formula and things started to get better. He was having mucus with a little bit of blood which is what happens when there is trauma to that area. The stools started firming up again and within 5 days there was no more blood. Chalk one up for MOM!!!! I was right. No need to change his formula.
Once we left the hospital our next visit would be an overnight for his Pre-Glenn Cardiac Cath. That was in August. So we were home for a month before we were back but it was a scheduled visit. Tristan has his Cath and then 2 weeks later, exactly 6 month from his Norwood, he was admitted for his Glenn. Tristan has his 2nd open heart at 6 months old.
I will write more about that later this week as the boys and I will be traveling to Daytona Beach for the Daytona 500 and to visit my parents.
Happy Valentines day to all my HEART BABIES!!!!!
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