Welcome to our blog!
We are creating this blog to update our families and friends on our two sweet boys Lincoln and Alexander.
Our twins were born December 11, 2012. They were 7 weeks early but things went really well with the birth and the first few days of the NICU. They only weighed 3 1/2 pounds at birth and they didn't have to be put on oxygen after the first day because we were able to get steroid shots while I was still pregnant, 2 days before they were born.
The first month was a roller coaster to say the least! The first few days were beautiful. We loved to hold our tiny babies and marvel at their miniature features. Jayson and I both had coughs, but we were told as long as we didn't have fevers and wore masks, we would be fine to be around the babies. About a week later, a nurse told us not to come in if we were wearing masks. This made a few other nurses agree with her and there were a few days that Jayson and I had to stay home. This was SO hard for me. I know the hospital was just doing their job and protecting their babies, but it was difficult to stay away from my newborn babies. My cough finally started getting better after a few weeks, and I was able to see the babies more often, but by then the NICU had noticed that there was something wrong with our boys.
Lincoln and Alex were having a really hard time keeping food down and their tummies were really upset. They weren't stooling very much and it eventually led to them getting x-rays to see what was wrong. It showed that they had a lot of gas and distension in their bowels and that they were not pushing stool through very well. My stomach sunk when I heard this news, because the way the nurses were talking about it they were really sick and we didn't know what was going to happen next.
They decided to try slowing down their feedings, and a bunch of other things, and in the meantime we had a few other scares, such as a heart murmur and possible cystic fibrosis (negative results, thank goodness), which all turned out to be ok, but their tummies eventually got bad enough that they had to do a special x-ray where they can see how things are moving through their colon. This eventually led to biopsies and finally we had the diagnosis of Hirschsprung's Disease. The good news was, that this is very correctable and our babies can lead mostly normal lives. Chances are, they will simply need to eat healthy in order to avoid major bowel problems, but that's not really a bad thing!
Hirschsprung's Disease is an absence of the nerve cells in the colon. This prevents the colon from pushing stool through, and can be life threatening if not corrected.Our babies have Short Segment HD which means it is just the end of their colons that do not have nerve cells. Since they were so small, we needed to give them a colostomy for now until they grow to about 17 pounds and then we can do a pull-through surgery, which connects the lining of their colon to their anus and allows them to poop normally.
We were relieved to hear that this was correctable and proceeded with the colostomy surgeries. Just as we were starting to feel relieved that things were heading in the right direction, our roller coaster took a steep dive. The surgery went well and we waited and watched them for the first day and things seemed to be going well for our tiny ones, except that they had a lot of secretions that the respiratory therapists had to keep pulling out of their lungs with a long tube that went down their throats and sucked a lot of gunk out.
The day after the surgery I went to visit the babies around 7:00 pm. I walked in and took a look at my sleeping babes and about 10 minutes later, Alex stopped breathing. The respiratory therapist kept turning up the oxygen on the machine, but it wasn't working. I watched his stats monitor as everything started slowly declining, and I felt helpless, watching my little baby boy turn blue and seeing his heart rate slow down. Other nurses started coming over to help and they started calling more nurses to help. I watched as tears started streaming down my face, with a numbness starting to creep over me. My tongue started to feel weird and my hands started tingling and I couldn't swallow. All I knew was my baby was slipping away and there was nothing I could do.
I finally couldn't take it anymore so I ran out into the hallway to call my husband and hope for a miracle. While I was waiting for him to get there I started praying. I begged Heavenly Father to let me keep my little boy. I wanted to have him with me and raise him and watch him grow up, just like I had always dreamed. After pleading and begging for a while, I took a deep breath and tried to think of what I needed to do to get through this. I finally said to Heavenly Father, "If you have to take him, I understand. It's your will, not mine." and after that, I had a small bit of peace, enough to pull me through and let me know that no matter what, even if my little boy didn't make it, everything would be OK.
Right after my husband got there, a nurse came and told us that Alex was ok. We went to see him and they explained to us that his heart had stopped, and they had to do CPR, and give him an adrenaline shot but he was ok now. They had taken an x ray of his lungs and his entire left lung was collapsed and most of his right was filled with fluid. Apparently they had both contracted a virus (CMV)right before the surgery and we had no clue.
Lincoln also had an x-ray taken and his lungs had a lot of fluid as well just not quite as much as Alex.
This made their NICU stay considerably longer and we had to stay another month until they were well enough to go home. We finally brought our beautiful baby boys home on February 9th and we were able to cuddle with them and hold them as much as we liked!
Right now we are about a month away from their pull-through surgery and we are excited/nervous to go through the experience of having our babies poop normally! We know that it's not going to be perfect and that they will probably have a hard time learning how to poop at first, but I know that things will get better with time.
Thanks for taking the time to read this long post! We will keep you updated with all the big changes we have coming up!
