12/29/11

When we were in the NICU with Avery, I had a nurse practitioner ask me if we would have done the testings while pregnant to detect the Down Syndrome now knowing she has it, our answer is NO. It wouldn't have made our decision about the pregnancy change, there is no magical drug to correct it, God gave her to us for a reason. He hand picked me and my husband to be her parents, we wouldn't change a thing.
When my husband came back from the NICU, eyes red from crying, I thought he was going to tell me that she was gone, they lost her. My heart sank instantly and I started to panic waiting for him to tell me what was going on. He said, They think she has Down Syndrome, as he began to cry again, I just looked at him and said, its OK! I told him that God gave her to us for a reason, we have a strong committed marriage, we can provide for her that others might not be able to. He just looked at me and agreed, we decided right then and there that we had to pull it together and be strong for Avery, she was really sick.
I recently read a statistic on women that terminate pregnancies that find out the baby has DS. It was a story that the mom found out at 20 weeks pregnant, and they found it at her 20 week ultrasound. She contemplated terminating the pregnancy, and received pressure from the Dr office to terminate due to other medical conditions along with the DS. I read that 92% of women terminate pregnancies once they find out the baby has DS. 92%!!! I couldn't believe how many babies are being killed because of something that they can live with and have normal lives, but also something that no one could change, our society has a terrible view on this. My baby has 2 arms, 2 legs, 10 fingers, 10 toes, and does everything that a normal 4 month old does. These babies aren't even given a chance, I thought about this all night long, and couldn't believe these babies weren't given their life. I guess if I could potentially touch some mother's life somehow to show them that you will have a normal baby, they will just have some special needs, but it could definitely be worse. Maybe it is easier for me to say because my baby was so sick at birth that we could have lost her many times while she was in the NICU.
I remember that I kept praying, please God we want her, don't take her, there were many sleepless nights that we sat next to her bed crying, praying that whatever they were doing was going to work. It felt like a dream, we went in so calm and thought we knew what to expect, we had done this before. Our life was turned upside down, there were times when I thought I was going to lose it, but I didn't. Now our life is more normal than it has been for the past 4 months, but like I have said, I wouldn't change a thing.
I don't mean to be depressing, but I find this therapeutic, and have wanted to do something that might touch someone else's life with our story, I guess I will start with this.

Avery Lynn

Avery was born on 08/17/11 at 1:32am at 6lbs 10oz. My labor was easy, way easier than my first child, I knew I was in labor, it started about 3am on 08/16. I got up with my husband when he went to work, told him I was in labor, I took a shower, told him to go to work, I headed to my OB to see how far I was dilated, I was 4 centimeters, so I went back home to wait it out. It kept stopping so I thought I had forever if not another 24 hours. Later that night I was talking to my cousin that was also the same gestation as me, and I had one large/hard contraction. I knew right then we needed to go to the hospital. I woke up my husband, this was 11:30pm, we live 35 min from the hospital and we still needed to drop off our oldest daughter at my mom's house. I was only in hard labor for maybe 3 hours, very quick, I didn't have an pain meds, like my first labor.
She was sent to the NICU shortly after birth with respiratory distress. After my husband went with them , they advised him that they think she had Down Syndrome, and showed him why. He came back to me in the maternity center about 2 hours later and advised me what they said, they were still trying to figure out her respiratory problems. I was finally able to go see her, they were attempting to put an arterial line on her belly button, they had her on a table with several people in the room working on her, it was the scariest thing I have ever seen. We had no idea of the DS before birth.

We took a couple hour nap, then they advised us if she didn't start responding to medication, she was going to be sent to the Iowa City hospital, a larger one. After our pastor came and prayed with us the treatment starting working, which meant that she had Persistent Pulmonary Hypertension PPHN. She was put on a ventilator for 3 days with oxygen and nitric oxide. The nitric worked and they were able to take her off of it.

Two days later she had a PICC line placed in her leg, a more permanent IV line. Then the following day she went down hill again respiratory wise, they weren't sure what was wrong, thought maybe the PPHN had not been resolved. Come to find out she had MRSA staph infection in her blood and lungs, which caused a partial lung collapse on her right side, which was MRSA pneumonia.

To treat the MRSA they had her on a broad spectrum antibiotics, and she was put on a C Pap machine for breathing, back on oxygen and nitric oxide.

She needed two blood transfusion due to the blood loss from her labs.

The antibiotics were working as far as could see, her CRP level was dropping, but her white blood cell count was very high, it was still 89K. They did a CT scan to see more of her lung. An empyema was found in her right lung, which is a ball of puss the MRSA caused and the antibiotics couldn't fight. They called in a PED surgeon, radiologist, and pulomonologist , when the surgeon walked in, he said he couldn't believe she wasn't on a ventilator b/c it was so big. She needed surgery to remove it ASAP.
There was an empyema also starting on the left side as well, and there was a possibility to need surgery on the left a couple days later. She had surgery on her right lung 2 days later, she was too small to have it done laproscopically, the surgery took about an hour, and she has about an inch and half scar under arm. She was back on the ventilator for 24 hours, and went to vapo therm after that. She was two weeks old.

She responded well to the surgery, she was moved to a crib 4 days later, and was allowed her own clothing. Her CRP and WBC came down to normal levels, and she didn't need surgery on the other side. She was on vancomiasin for over 20 days. Things were on the up and up.

We were working on getting out of the NICU. She still had a hazy section on the xray of her right lung that wasn't clearing up, so she had a broncoscopy and found an abnormal upper right lope that was still partially collapsed, it was washed out and blown back up. She was also born with stridor, laryngeal Malaysia (which we already knew about) and now bronchial Malaysia. This means she has a floppy airway that is also a small airway, in more than one section.

We were released from the NICU on 09/31/11, 6 weeks after birth. She was nursing and then bottling for supplements.

She wasn't gaining weight, we consulted lactation, we changed the feeding to nursing first, then bottling 2oz, she wasn't getting enough from me. That wasn't the best approach. We ended up back in the hospital 4 weeks later with viral pneumonia, her speech therapist thinks she was being pushed too far with the feedings. She went home on an NG tube (feeding tube in her nose) and we were given a couple weeks to get the feedings under control or a G tube was going to be needed.

We were not home even a week and we were back into the ER with respiratory distress and she was admitted to the PICU, she required some oxygen, but only for a couple days, but we realized she needed the gastric feeding tube. I believe the feedings are what landed her back into the hospital b/c that day she took 3 bottles right in a row in 20 min each, then that night she went into respiratory distress, we knew what had to be done.

A couple weeks later we met with her surgeon, and made the arrangements for the surgery, he said it was going to be a piece of cake compared to her last surgery at 2 weeks old. They want this to be temporary and hoping she can get rid of it by the time she is 12 - 18 months old.

Things are tremendously better, there has not been anymore ER/hospital visits since her G tube has been placed, we are hoping it stays that way. She is doing weekly PT for what they call barrel chest, it is from the way she breathes, very fast. They are also working on her developmental milestones, she is really close to rolling over, she rolled from her tummy to back once, so it will be here soon. She rotates all the way around her activity center wiggling so much. She loves to communicate with you, which we love to see. I was just looked at her last night thinking I never thought we would ever be here, home just the 4 of us. I thought she was never going to get out of the NICU, then back to the hospital twice in two weeks, I thought this was going to be a long winter, but God has shown us her strength, and the power of prayer.

She was just placed on a anti-reflux med due to her spitting up a lot, and she didn't gain as much weight last week, so we will see what her weight is this week when her nurse comes, to see if the meds are working. If the meds don't work then we will be meeting with a GI Dr.

I have taken a leave of absence from work to stay at home with her, to be her nurse pretty much, to hopefully keep her well this winter, her lungs went through a lot at birth, and need time to heal, so we will see what the rest of the winter and spring bring. We were totally blind sided by all this, we never thought in a million years we would have so many medical problems with our new baby, we are under 30 years old, neither one of us have a history of medical problems, my pregnancy was completely normal just like my first. God has way of mixing it up so you still know he is there. I have complete faith he will get us through anything that is to come...