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.
12 comments:
Kerry,
I'm usually a blog-stalker (I love reading about your cute family), but I had to comment on this post. Thank you for sharing. You guys are incredible parents. I cannot imagine what you've been through but you've obviously done an amazing job. Mason is just adorable! It makes me not take for granted a healthy baby. He must have been one determined little spirit to hang on through all of that. Thanks again for sharing. I needed it today.
Whit
I can't believe that 6 years have gone by. I had tears in my eyes the whole time reading this. I am glad you put his beginning on your blog. I know that it was just the start of his many visits to doctors and hospitals. He is a true miracle and you should be accredited with a NICU/pediatric nurse degree. You and Spencer are amazing!!
Honestly I felt the spirit as I read and looked threw these pictures! It is amazing to see what you went through and literally see him knocking on deaths doorstep...and then to see him actually looking a little healthier....to looking like a perfect newborn! I think about you so much and how amazing you and spencer are..for dealing and making the best of this situation!! Mason is amazing and to see him now...and his huge smile...it just brings me close to tears everytime!! Thank you for sharing this...I am sure it wasn't easy...but I loved it!!
Kerry- I remember all of this. I was only your social worker while you were on bed rest, and then the NICU social worker took over. But I got updates on his condition every so often. Then I got to see you often when you had to come back to PEDS. I always felt so bad because you needed so much, and I couldn't ever find answers for you. I wondered how in the world you were going to make it through all of this and now I LOVE to read your blog and see how you did make it, and what a fantastic family you are. Ethan is such an amazingly tender big brother, and you and Spencer are amazing parents. Ezra is a complete doll. Mason is a lucky little man to have such a wonderful family!
Oh Kerry this post made me cry!! Your little family has been through so much! I can't imagine what you as a mother went thru. You are such an amazing woman!! And Mason has come so far!! I can't believe it! Happy 6th birthday little buddy!
What a sweet and special little boy. Having just given birth to my own little guy 13 weeks ago, I have a new respect for all that is involved in the process. My heart goes out to you for all the worry that you and Spencer went through but I'm so happy for you that Mason is now a strong, handsome six-year old boy!
You are an amazing person Kerry. What a gift your little guy is. What an amazing mother you are. I love reading your blog.
Kerry thank you so much for sharing that cuz most of us don't have any idea of what you really have been through so thank you that was really sweet and special for me to read.
I'm so glad you posted this. I've watched your blog for a while now, (sorry to stalk!) and I have admired you for the patient and kind way you mother your boys. Now I admire you for your bravery and courage and love during such a long, difficult road with Mason, too! All your boys are lucky to be in your family.
kerry
thank you for sharing your story! i feel more connected to you then ever before and have such a huge appreciation for the miracle that mason is! i will never forget those pictures thats for sure but i am glad that you shared them! what an amazing woman you are to have be the mother of this precious spirit, to be who you are. thank you for inspiring me!
Oh wow! I had no idea. I had tears in my eyes as I read this and saw the pictures. How hard to go through. You and your husband are truly amazing and so is little Mason. What a special little boy. Happy 6th Birthday to a very special boy!
What an amazing post! The beautiful pictures made me feel... so much. Your whole family is just awesome. I loved reading about how nervous you were to care for Mason. I thought, now you are such a pro at it. I am continually amazed at how wonderfully you meet sweet Mason's needs. Truly, he could not have asked for a better family, especially, he could not have asked for a better mommy.
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