Thursday, April 17, 2008

Hannah's Story

*The extremely long winded version*

Tony joined the Marine Corps in the summer of 2003 in the delayed entry program, meaning that he did not have to leave for boot camp until late November. He left the last week of November and his actual date of entry was December 2, 2003. A few weeks after he left I found out I was pregnant. This was a complete (wonderful) surprise. The problem was that the only form of communication I had with him was through letters. So I was faced with a choice, tell him in a letter, wait until he got home, or hope that he got a phone call on Christmas and tell him then. We got a five minute phone call in which I told him he was going to be a daddy!
The weeks went by, he graduated from boot camp in February and was home for 10 days before he had to got to MCT (Marine Combat Training). During that time my doctor did an early ultrasound so he could see the baby. At that time the doctor guessed she would be a girl. He left for MCT in NC and then headed to Missouri for his specialty training. Since Ft. Leonard Wood was only three hours from where my Dad lives I "moved" to my Dad's for about five months so I could be closer to my hubby.
Shortly after I got there I had my 20 week ultrasound. My step-mom actually worked at a OB/GYN office so I got a little special treatment. The doctor came in on a Saturday and did the ultrasound so Tony could be there. He spent at least thirty minutes with us, and even gave us a video copy of it! He confirmed that it was a girl and that was that.
At about 34 weeks I went for my doctor's appointment and was having a few problems. (I will spare some of the details here.) I was given a non-stress test and Hannah's heart-rate dropped pretty low during this. The doctor came running in and told me to roll onto my side. I did, it did not help. I rolled to the other side and it came back up. He told me the baby did not like me laying on my back. He also told me I was having some contractions and he wanted to monitor them. He very quickly sent me down to the hospital, I was hospitalized (the weekend of July 4th) to try to get the contractions to stop. Originally I was sharing a room, but when one of the doctor's saw that he simply said "This won't do. I'll get you your own room." Shortly after, I had my own room. (Did I mention I got special treatment?) I was given the wonderful Magnesium Sulfate...which gave me hot flashes, nausea and really was no fun! I was also not allowed to get up...pregnant lady + bedpan = no fun. Seriously can you just imagine trying to use a bedpan at 34 weeks? Anyway, I was sent home on Sunday on bed rest and was given a prescription to take every four hours to keep the contractions from coming back.
I started noticing that my contractions were coming back between the pills. I went back for my weekly appointment at 35 weeks and I was having contractions again. I was hospitalized and the doctor told me to be prepared to stay until I had the baby. Shortly after I was admitted the nurses started noticing that Hannah's heart rate was dropping after each contraction. They just said they would monitor it because for now it was fine. Then my membranes started leaking. Did I mention that she was breech? So, there was no way she was coming on naturally.
My step-mom contacted the red cross in order to get ahold of my husband. Even though he was only at school, during the day I had no way to get ahold of him. The red cross said they could not contact him because it was not a life threatening situation. To which my step-mom put the doctor on the phone and he told them that it WAS a life threatening situation any time anyone went into surgery. Not to mention that the baby was five weeks early and was experiencing fetal distress. So they called him around 1:00pm on Friday. His Sgt. would not let him leave until around 3:00.
Around 5:00 pm Tony still was not here and the doctor said we could not wait any longer. My Dad went into surgery with me. I was really amazed at how fast the surgery was! I could feel pressure, but tried not to think about what was going on. Then I felt the doctor pulling Hannah. He was really pulling hard, so hard in fact that I felt him pull me up off the table and I had really bad bruising around my incision a couple of days later. He finally got her out and she had the cord wrapped around her neck twice, which is why she was stuck. She was also not breathing. They whisked her over to the bassinet where I could not see her, but I saw the blue bag! I was so scared, I remember asking my Dad what was going on. I kept telling him to go check, but he said he didn't want to get in the way. After a few minutes she cried, then they whisked her away to the nursery. She was such a tiny baby, 5 lbs 11 oz and 17 3/4 inches long! (By the time we left she was only 5 lbs).
I went to recovery and on my way out, they stopped at the nursery so I could see Hannah. Just as they brought her out Tony walked around the corner. This was about 6:00 pm so he just missed her! Anyway, I remember how beautiful she was and how much blond hair she had! They took her back to the nursery and I did not get to see her until after 9:00 because they wanted to monitor her and make sure everything was ok.
The next morning my mom and Tony's parents arrived after driving all night from Ohio. Sometime that morning the pediatrician came in (when Tony was not in there) and said she noticed a problem. She said that Hannah's limbs were shorter than they should be, specifically the long bones. She also said that she was born early because when something is wrong this is how it is taken care of. (Although my Mom does not remember her saying that, she says that she said she was born early because she had something wrong.) Anyway, I was devastated that she would give me this kind of news, especially when my husband was not with me and then to say something rude like that. I have an entire different post about that. The rest of our stay was uneventful, except for the fact that Tony got food poisoning and was sick as a dog. We got sent home on Sunday the 11th and Tony had to head back to school that night.
The first week of her life she had so many tests. She had several blood tests, she had an MRI and she had jaundice so she had to stay under the light for the first week. The second blood test was a DNA test to check for the gene mutation in the FGFR3 gene. She was poked five times, including once in the head, before the doctor decided to do an arterial draw. That was not fun. The MRI came back normal and we had a few weeks to wait for the lab results. The DNA tests are 99% accurate for achondroplasia and 80% accurate for hypochondroplasia. The results said "No sequence change from normal" Hmm, what does that mean? The geneticist who ordered the blood tests had said that Hannah had very mild outward appearance of achondroplasia but she still thought it was achondroplasia rather than hypochondroplasia.
When she was five weeks old, Tony graduated from his school and we went back to Ohio for a few weeks. Then we moved to North Carolina which would be our home for the next three years. However, when she was six months old, Tony left for Iraq so we went back to Ohio for the seven months to be with family. During that time we went to the Cleveland Clinic to see a geneticist. He did a full skeletal survey and diagnosed Hannah with achondroplasia from that. He said he would like to find out more about what happened at John Hopkins, but we never heard back from him because by that time she was a year old and we were back in North Carolina.
Since then she has had no serious problems. It was just nice to have an official diagnosis so we knew what we were up against. We had already assumed it was achondroplasia and had researched it, and understood it but now it was official.
Looking back I feel like I was so uninformed, mostly by my own fault. After looking back over the results it now brings up questions that I should have asked back then. There are so many things that I should have been concerned about that I did not really know about. I was wearing my rose colored glasses thinking that everything was going to be ok. Which, up to this point it has and I am very thankful for that. It has taught me that I need to be more informed and I need to be prepared to ask questions to ensure that she is getting the care that she needs.

Be on the lookout for my "report" on what achondroplasia is.

3 comments:

Jennifer said...

Catie, thanks for this post. Even though I knew some of the story from talking to you at Tonya's it's always amazing to hear the details. Poor Tony. I bet he was frantic. I'm so happy that Hannah is happy, healthy and perfect after a rocky start.

Christie O. said...

wow -- what a post. that must have been very difficult for you! my first was born early too (for different reasons) and it took me months to get past it!

welcome to the contest!! i had a tough week -- only a pound lost but i'll have to bounce back somehow. come back come back come back and sign the linky to enter the contest!! it's a few entries down!

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