Monday, February 25, 2013

My First NICU Experience- Megan & Matt's story

My story: (well, one of them) I'll do my best to tell this story as cohesively as possible. Seriously my memories flood my mind like tidal waves. It's been so long that I think I may have forgotten a lot of medical details but the emotions are as fresh as they were 14 years ago!

I knew that my twins would more than likely come early as I'd had a very difficult and complicated pregnancy. Everyday we'd pray for just one more day because each day meant that my babies were bigger and stronger and would have a shorter stay in the NICU. On Sept. 12, 1998 I was 32 weeks pregnant and my water broke in the wee hours of the morning. It was time to go to the hospital, ready or not. One of my babies could not be born vaginally due to her omphalocele (birth defect of the abdominal wall) so an emergency C-section was in order. The operating room was full of doctors and nurses; my doctor and nurse, and a team for each of the babies. At 9:18am my daughter, Megan Mariah, was delivered, I heard a cry and she was whisked away by the NICU team. I barely got a glance of her. Three minutes later, my son, Matthew Vernon came into the world. He cried and the nurse took a moment to put that precious baby up to my face before he was also rushed to NICU. Matthew weighed in at 4 lb, 11 oz and was 17 inches long. Megan weighted 4 lb, 5 oz and was 14 1/2 inches long. After getting to my room from recovery I learned that I would not be able to see my babies for 24 hours because of my C-section. I was devastated! I needed to see my babies and they needed their mommy! To make matters even worse, the omphalocele was much worse than the doctors had thought it would be. Megan was diagnosed with OEIS complex.(We knew at 16 weeks that our baby would be born with a defect) My poor husband had to receive the new of our baby's serious condition on his own. It was so difficult to process all the information we were getting not just for one baby but two. Megan could not breathe on her own and was on a ventilator. Matthew was mostly healthy, he needed some oxygen support, had to learn to suck and gain weight. He did spent about 24 hours on a respirator but that's pretty good for a 32 weeker! I spent 4 days in the hospital. On the day my husband drove me out of that hospital parking lot, I just lost it. I cried huge sobs from the depths of my soul. Not leaving that hospital with my babies was one of the hardest things I ever had to do.

Megan had her first surgery at 5 days old to attempt to put her bowels and liver back into her abdomen and a protective covering was placed over the organs that couldn't fit just yet. Megan also had an imperforate anus and had to have a colostomy And that was the first day we were able to hold Matthew. Yes! 5 days without being able to hold my baby was excruitating! That day was so exhausting. We were so worried about our baby in surgery (I can't even how long the surgery lasted, but it was several hours) and at the same time we were so excited about our baby that was doing well. One minute you feel joy and the next minute you feel guilty for feeling that joy when you have a baby that is so critically ill. Matthew continued to have ups and downs. That's very typical of preemies. One day you see progress, the next day is two steps backwards. Megan had her 2nd surgery at 17 days old to "stuff" the remainder of organs back into her abdomen that didn't fit at the previous surgery and to have a skin graft to cover the opening in her abdominal wall. Within a couple of days her conditions rapidly deteriorated. She got an infection and became septic, her organs began shutting down and at 23 days old our precious baby went home, not to our home here on earth, but to our heavenly home. At the same time our Matthew was improving each day. He just had to learn to eat better. He would burn more calories trying to feed than he would get from nursing. Once we decided to bottle feed him he began to gain weight and thrive! I was so disappointed that I was not able to nurse him but it got to the point that I just needed to get my son home!
You begin to feel like you will never get to take that baby home. You feel so alone, even though there are many nurses, doctors and other families there with there own little ones. It seems like you live in a bubble inside the NICU walls, you lose all contact with the outside world. Really, you wonder how the world could possibly continue about it's business when you are experiencing such a difficult time. But the world does go on. Thankfully there were so many people, family, friends and complete strangers praying for us, encouraging us to hold on to hope and faith. One day I walked in to the NICU and inside each of my babies' isolette there were little stuffed animals that someone had delivered for them. We were told about the ladies that knitted the hats for our babies to keep their little heads from loosing too much heat. Cards were delivered, special tokens and momentos. These things helped keep us going, especially on those days that just seemed like we would never survive this experience. This is why this project means so much to me. I could go on and on about our ups, downs, emotions and how we coped. I'm sure I will continue to share about this experience as I remember other details and other memories.

Matt finally went home at 5 1/2 weeks old weighing 6 lbs. After a week at home, he gained a whole pound! He did go home with a apnea monitor since he would still have some apnea episodes and bradycardia (slow heart beat) on rare occasions. He stayed on the monitor for 6 months without incident. Well, the monitor would go off and scare us to death but that was because the wires would come off. Matthew did suffer from respiratory problems through his first two years of life but he is now 14 years old, nearly 6 feet tall and perfectly healthy!

Saturday, February 23, 2013

Welcome to Project NICU

My name is Amie and this is my very first blog so bear with me. A little about me......I am married to an amazing man. He's my rock, my go to guy! We've been married for almost 19 years and it's been quite a ride! We have a handsome, smart, talented, 14 yr old son, Matt, and a beautiful, sassy, energetic, 2 1/2 yr old daughter here on earth and two precious babies in heaven. I own and operate a home child care. I am passionate about the important things in my life, I wear my heart on my sleeve, I love to shop, and wish I had an extra day in the week between Saturday and Sunday(don't we all!). I love chocolate, coffee, and wine (all in moderation of course!)I have been blessed to have some pretty amazing people in my life in good times and bad! Well, enough about me and on to how Project NICU came to be.

 I recently discovered that I love to sew. I started sewing clothing for my two year old daughter, but she already refuses to wear hand made clothes. Even though she loves dresses and skirts, and I've made her some really cute ones, she just won't wear them. Seriously, she's quite the diva. So, a few weeks ago, I made a baby blanket as a gift for a friend that is expecting any day now. The blanket turned out so cute and mom to be loved it! She loved it so much that she told me I should start selling so that got me to thinking!. Although it would be nice to make a little extra money, I decided I wanted to do something with my new found "talent" (I use the term liberally, I'm no Martha Stewart) that was meaningful to me, represented something important to me, and allowed me to give in a way that was meaningful to others. Making blankets made me think about my own babies who were NICU babies, how traumatic those experiences were and how I could use these beautiful blankets (well, I think they are beautiful)to touch the lives of families experiencing the NICU.

 And there it was.....the birth of Project NICU.

 Ideas started flooding my brain like tidal waves! I started calling all the hospitals to see how many babies each currently had in their NICU's. One hospital had a staggering 34 babies, another had 40 some odd beds but couldn't tell me exactly how many were occupied on that day. Wow! That's a lot of blankets! I couldn't wait to get started. Rushed right out to buy fabric to start sewing my blankets for these precious little babies. I quickly realized there was no way I could afford to make enough blankets for even one hospital, let alone all the hospitals in Tulsa! One blanket costs almost $20 to make unless you get the fabric super cheap which I didn't for the first few. So, I decided to share my idea with friends and family on facebook. I created a Page and shared it on my personal page and immediately started getting "Likes" and people asking how they could help. I was blown away! I really thought I'd get a few likes, you know, from my mom and maybe a couple friends.

 Currently we have 81 likes and several people volunteering to help sew, write notes of encouragement, make deliveries, buy fabric, or make cash donations among other things. I'm totally excited about this project! I'd love to see it grow into something HUGE, but even if we just get blankets to one hospital, to let those families know they are not alone, to make a difference for even one day, then so be it! But I believe together we can do something HUGE! Please share this blog and visit NICU I'd like to thank my wonderful friend, Jordan Sanders, for her support with project NICU and for setting up this blog! I am so thankful God put you in my life!