Home, Sweet Home

Sooo, I planned to write every day that we were in the hospital... it didn't happen obviously. :P
But, here's a summary of our stay:
Alex's surgery also went really well. (We had an amazing surgeon!) But unfortunately his spinal block for pain afterward didn't work nearly as well as Lincoln's did. Poor little Alex was having a hard time with the pain for the first little while until the morphine started working. I was also able to go back and see him in the recovery room before they brought him up to the room and since he was having such a hard time, they let me sit in the bed and hold him on the way up. Everything went well for the first day and then Alex started having breathing problems... again!! Just like his first surgery! He just kept breathing SO loud and the nurses and doctors kept coming in to listen to him. I kind of panicked a few times because it was just bringing back too many memories of the first surgery where we almost lost him, but every time they checked on him they said that his lungs sounded clear and it was mostly his airway that was inflamed, most likely from the tubes they had to put down his throat during surgery. He ended up getting about 5 breathing treatments and 2 steroid shots during the 6 days we were there. He's doing so much better now and we haven't had any problems since, thank goodness!
Our hospital stay consisted of mostly keeping on top of their pain control and learning to change their diapers. It took Lincoln just a few hours to start pooping but Alex didn't start until the next day. Their diaper rashes started within a couple days and we had to make sure we were just dabbing at their bums instead of wiping, and we had to put a lot of barrier cream on. They definitely don't like getting their diapers changed! It's pretty sad to listen to them bawling while we try to get all the goopy poop and cream off their little bums. :( We seem to be increasing the amount of diapers we use each day. We have to change their diapers as soon as they poop because it needs to be cleaned off right away. We are now changing 1-2 diapers an hour for each of them because they are starting to poop so often! We've been getting help from the ward for diapers and from a couple other people. I feel so blessed to have so many kind people around us!
Right now we're just taking it one diaper change at a time and looking forward to the day that we don't have to be changing them every 30 min!

Here's some pics of their first day in the hospital.

Lincoln

Alex

Surgery Day!!

We brought our boys in at 3 pm yesterday and admitted them to the pediatric ward. Within the hour they both had IV's in and were being prepped for a bowel clean-out. Luckily we had a good nurse putting their IV's in and we only had to poke them once each. It breaks my heart when they are crying so much! I just had to try to comfort them and distract them the best I could.
They put an NG feeding tube down their noses and started pumping the bowel cleanser in to them around 5. It worked REALLY well! They were filling their bags pretty fast and it was like water coming out of their colostomies. This made the sticky wafers around their colostomies fall off every 5 minutes. So I was having to change bags non-stop from 5-11pm. It definitely made me excited to be getting rid of the bags soon!
After they were done with the bowel cleanse things finally started calming down and we were able to try to rest for about 5 hours on the little couch-bed and chair-bed. SO uncomfortable! I'm not looking forward to sleeping on here for the rest of the week. :(
The surgeon, Dr. Downey came by around 7 to say hi and let us know everything that was going on. Lincoln went into surgery at 8:30 and we just stayed in the room with Alex waiting for Lincoln to be done. 
They let us know around 2 that his surgery was done and we were able to go down and wait for them to bring him out of the recovery room. They normally don't let family members in there but they allowed me to go in and see him while he was waking up. 
He was so groggy and he looked ornery and pale but he seemed to respond to me being there and I was able to calm him down. I felt so bad for him just laying there being confused and probably in pain. He's not in too much pain though because he basically has an epidural and that should last for 12 hours. 
Alex is in surgery right now and should be out around 6. We're just trying to keep Lincoln comfortable and as happy as possible while we wait for Alex to be done.
I feel so blessed with how happy and easy-going our babies are! They keep smiling and laughing at everyone even though they probably don't feel very good with all the medicine being given. They are such cute little boys and I feel so lucky to be their mom!
We have a lot of support and help from our family and friends and I'm so grateful for that! I know that Heavenly Father is watching over our boys and I have faith that everything is going to go perfectly. 

First Blog!!

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!