It all started on Mother's day 6 years ago... acutally quite a few weeks before that. I was having a lot of trouble with my pregnancy and was being closely followed by perinatology among other doctors. It was great having weekly or bi-weekly ultrasounds until one day the Dr. told me that she was concerned about the baby and I would be put on bedrest. I wasn't allowed to leave the hospital. They needed to monitor me around the clock. I would have ultrasounds in the morning and in the evening, I would have amniocentesis tests done daily, I would have daily labs, I would have a PICC line placed for long term care, I would be monitored around the clock and would be given short supervised bathroom and shower breaks as needed. I would not be allowed to walk around or do much of anything. It was a nightmare for me. I felt like I was being torn away from my 15 month old son. He came to visit but it wasn't the same. Not many people even knew I was pregnant. I was 22 weeks along when I was first hospitalized. The picture below is Mother's Day when my family came to see me. This was taken about 6 hours before Mason was born by emergency C-section.
After everyone came to visit me and we had a great day eating strawberry shortcake they all left. Just after they all left I received a phone call from my OBGYN. There was a problem with my amnio. They had cultured a bacteria called enterococcus and Mason would have to be born immediately. I called Spen back and things got crazy. They had to wait 4 hours because I had just eaten. The nurses prepped me, the respiratory therapists came to explain things to us, the Neonatologist that would be admitting Mason came to talk to us and explain more things that I just couldn't process at that time, and my doctor talked to us about what was about to happen. We had no idea what we were in store for.
I was tied to a table so they could have better access, people were rushing in and out of the room. I was scared beyond words. Spencer was told to come here and go there, he was all over the place. The doctors cut him out and the respiratory therapists, the NICU nurses, and the Neonatologist began working on Mason... but something was wrong. Nobody could figure out what was wrong with him. He looked as though he had been dipped in boiling water. His skin was transluscent and tight. He was 27 weeks gestation and had the complications that came along with being 3 1/2 months early but there was something else. Nobody knew what to do. What was wrong with his skin.
After the delivery and after they had stabilized Mason he was taken to the NICU and I was taken to mother-baby. I heard he was around 13 inches long and that he wasn't given an official birth weight because they were too busy stabilizing him. His weight after they had started all of his lines and intubated him was just over 2 pounds. I still had not seen my baby. I had just overheard the comments from nurses and doctors. My nurse would not let me go see my baby. I begged all night. I was finally allowed to have Spencer take me to see him in a wheelchair. I still wasn't recovering well. There were so many doctors around him when we got there. They really didn't know what to say to us. I mostly remember not being allowed to touch him or even lift his humidity tent to see him. The picture above is how I saw him for the first few days. I did get to see a picture or two Spencer took just after admitting him before they noticed the deep cracks that were forming in his skin.
When his skin would crack they would wrap it with loose gauze. He was given a moist cottonball bath every 2 hours for the first few weeks. He was lotioned head to toe every 2 hours. After a few days they had given his skin condition a name. Lamellar Ichthyosis or possibly a Harlequin Fetus. He had presented as a collodion baby. This was an extremely rare condition that the doctors had been researching online. They were not sure how to take care of him being a preemie with this condition. It was unprecidented. As a result of his extreme prematurity and his skin condition, Mason was extremely sick.
The nurses immediately took a special interest in this sweet little boy. They would do whatever they could to make me smile when I would come to visit him. We had a picture of Ethan wearing a blanket as a cape taped to Mason's isolette and the next day I came in to find this picture taped next to Ethan's. Mason was a super hero too..
After a week or two we were allowed to assist in Mason's frequent baths and lotionings. He was heavily medicated to ease his pain, but it was still very traumatic for me. I loved being able to do anything to help take care of him.
At least I had another sweet angel to go home to everynight.
Mason just progressively got sicker and sicker as the hours went by. I would receive several phone calls in a day from Mason's doctors giving me hourly updates on his status. It rarely was good news.
This was the very 1st time I was allowed to 'hold' him. They would change his linens everynight and to do so they would lift him up, change underneath him, and set him down. This was a 4 or 5 person job. Spen let me be the first. It wasn't much, but really it was.
My dad was in the bishopric of a single's ward. They took it upon themselves to take care of our nightly babysitting needs. Our families and friends helped me with Ethan during the day, but at night when we wanted to go visit Mason together 2 singles would arrive at 8:30 everynight and they would stay until 11 or 12:00 that night. It gave Spencer and me a chance to spend time with Mason together. For the first 8 weeks it was valuable time. Everyday we weren't sure if he would make it to the next.
Spencer was so confident taking care of Mason's needs. I was pretty hesitant and made sure I was supervised at all times. Everynight when we would arrive together we would have the nurse explain everything that had happened that day. There was always something big. It was heartbreaking to hear. I prayed everyday that he would survive it.
There wasn't a lot they could do. He just got worse and worse. Pneumonias, septic, blood infections with bacteria and yeast, new ventilators, Mason had it all. At one point he was so far gone that the director of the NICU came to us with an idea to use a medication on Mason that had not been approved for infants. They were out of options. He got worse before he got better, but he did get better! The next several pictures are pretty graphic, Spencer still can't look at them. I like to look back on how far Mason has come and everything he has overcome...
Mason was very sick for a very long time. There were more infections and close calls and procedures and medications to mention. You can get an idea from the pictures of what he had to overcome... This was a good day. Mason was improving and outgrew his 1st home and moved into this new isolette.
Another good day was when we were finally allowed to hold him. They liked us to hold him 'skin to skin'. I guess they responded much better that way. I don't know, but I sure loved being able to actually hold him. This picture was when he was 7 weeks old.
Still growing up. Picture to prove it
Finally having him open his eyes was another good day.
Big feet! 2 1/2 months old.
My wedding ring. 2 1/2 months old.
Good to get to touch him without gloves.
This was another big step and great day. The day Mason was extubated. I was so proud of him.
Carseat trial. He had to do well in his carseat for several consistant hours before he was allowed to come home. He passed.
HOME!! Only 3 1/2 months later.
First meeting with his soon to be best friend and favorite big brother Ethan.
