As Promised...
December 27th, 2006, I found out I was pregnant. I had a feeling I was, so it wasn't a surprise. I wasn't sick, I had no physical symptoms of pregnancy, I just knew. Call it a mother's inuition. God works like that. We were excited about it, very excited. Nervous, but, excited.
Things were good for a few weeks. Life was great. And then, about 9 weeks into my pregnancy, I started bleeding. I went to the emergency room at St. Joe..They did a sonogram, said things looked fine, but that I may be having a miscarriage. I was sent home, and told to go to the doctor in a few days to "make sure everything passed". The bleeding stopped later that evening, and I calmed down. I thought things were going to be ok. Three days later, it starte again, worse. This time, it was much closer to go to Wesley.
We got there, and they took me in for a sonogram. We sat there & marvelled at the little jumping bean on the screen, comforted just to see the wiggles & know everything was ok. The tech left, and about ten minutes, before taking us back to the room, gave us a picture from the sonogram - baby's first picture. Odd, but, we were excited to have the picture. After a short wait back in the room, the doctor came in. The expression on his face was very solemn. Quietly, he asked us to have a seat while we talked.
He told us that the baby had a condition called Hydrops Fetalis. Basically, her entire body was clogged with fluid. I could tell as he talked, that it was very hard for him to tell us this - the look in his eyes, was full of pain. It couldn't be an easy thing to have to tell two prospective parents - our baby was dying.
Devestated, we headed home. There was nothing to do but wait. I called my Mother & had her meet us at home, only wanting to explain what was happening once. As hard as it was to hear that my baby was dying, the pain was compounded by having to be the one to tell my Mom & Grandma that their new grandbaby was dying. We sat down that evening, hugging & crying, full of pain. There was nothing medicine could do - this was entirely in God's hands.
A few weeks later, still pregnant, we had another sonogram at the doctor's office. When pregnant with my oldest, Alex, I had gone to the same doctor's office. I was excited to see the same ultrasound tech there to do my sonogram that day. A petite red headed lady, I remembered her as being chipper, chattering with me through my sonogram when I as pregnant before. That day though, everything was differant. She showed us the baby, showed us the heartbeat, and then turned the monitor. The silence through the sonogram, was eerie. She gave us a picture at the end of the sonogram, and left abruptly. About ten minutes later, a nurse came into the room. She told us that we needed to see the doctor that day at three about the results of the sonogram. It was approximately eleven in the morning at this point. I was so nervous. I went home & put my baby's sonogram picture up, happy to have it, and nervous about what it meant.
At three that afternoon, we were in the doctor's office. I was so nervous I was physically ill. My daughter's father was with me, but there was nothing I wanted more then my Mom. It's true, no matter how old you are, no matter what point you are at in your life, there are just times that no one holds a candle to your Mom. We were waiting in the exam room, when the door opened. I lookd up, expecting to see the doctor, and there stood my Mom. She had told us she didn't think she'd be able to make it, and having her there...I cna't put into words how much that meant to me. As much as I didn't want to admit it, I truely did need her. more then I can say.
Moments later, the door opened again, and the doctor was there. He was a tall, thin man, with expressive eyes. You could tell just looking at him that, much like the doctor we had seen two weeks at the ER, he was hurting, too. He sat down across from us, and took a deep breath before beginning to talk. The ultrasound had shown that our baby had a large tumor called a Cystic Hygroma. It's a soft tumor filled with lymphatic fluid, on the back of her neck. It's typically associated with chromosomal problems. He then took another deep breath before telling us that, in his 17 years as an OB, he'd seen one other baby with this condition. It survived to seven months, and then was stillborn. He recommended we have an amniocentesis to find out exactly what was causing our baby's condition.
We left the office with heavy hearts. Me, my (now) ex, and my mom stood outside the building for about ten minutes, holding each other and crying. We had thought that, having avoided miscarriage twice already, we were out of the woods. Little did we know what a battle we were in for.
Every night, I went to bed terrified that it would be the last night I went to bed pregnant. Every morning, I woke up, afraid it would be the day my baby died. The fear...the constant fear. It's something I will never in my life forget.
The day of the amniocentesis, I was 18 weeks pregnant. They did a level 2 sonogram, checking anatomy & measuring everything. We tried to get a glimpse at if we were having son or a daughter, but, the baby kept it's legs so close together, there was no way to tell. We got four pictures, and went to an exam room to wait.
Shortly thereafter, a student doctor came in. He was young, he was inexperienced, and he had to do a very difficult job - explain to us just how grave of a situation that it was. The baby was in heart failure, it appeared that her lungs had stopped growing about three weeks prior, she had heart defects, kidney defects, and fluid pockets all over where she shouldn't. We asked what the odds for survival were. The reply? "Absolutely zero". The doctor came in a few minutes later, and explained things a bit better. We were told that our baby would definetly pass away within 4-6 weeks, and we were advised to terminate the pregnancy and try again. We declined this, feeling that any time we got - even if it was just while I was pregnant, was that much more time with our baby. She then asked if we wanted to go ahead with the amniocentesis, or just wait & submit the body for post-mortem testing. We opted to go head with the amniocetesis.
The amnio, was by far one of the most painful experiences in my life to that point. It had about the same level of pain as labor, and was compounded by the mental anguish of the news we had just recieved. The student doctor initially was doing the test - he poked me three time with the needle, and then the doctor took over and got it on the first try.
The next few weeks, wow. I didn't know I was capable of being that scared. We spent a lot of time at the doctor's office. Finally , 2 weeks later, at 20 weeks pregnant, the results were back in. The doctor called me, and said that our baby, has something I had never heard of before - Turner's Syndrome. Where as most women have 46 chromosomes, two of which being xx's, our baby has 45, only one being an x. Her second x was missing. Sometimes, this occurs as what is called a mosiac - only some cells are affected. Unfortunately, it was apparent in every cell that was tested. 98% of babies with TS pass away in utero. The other two, are miracles. Even after this news, I was excited over the moon - the dx of Turner's Syndrome meant I was having a daughter. I had a daughter. I had a gorgeous son, Alex, and now I was having a daughter. The fact of that, was amazing - even thinking I would never get to meet her, I had a daughter. We had already picked out her name - Gabriella was her father's selection, and Danielle was mine, named after anamazing friend who had taught me so much about love, life, and friendship. She was a fighter, and had a strong spirit that I only wish I posessed. She had passed away in September of 2006, and I felt that surely she would be my baby's gaurdian angel.
Four weeks from the amnio came. The fear intensified every day, as four weeks came closer to five, and hen six...The maximum expected that she could survive. At that point, the doctors began discussing when to deliver her - and where. They initially discussed delivery at 28 weeks. If we could just get her that far, they felt we stood a good chance. We eased up slowly to 28 weeks, and her condtion was stable. It was post poned to 32 weeks. Once again, at 32 weeks, her condition was improving. At that point, it was decided that we would leave her in there as long as possible. I was at the doctors office most days, for either a heartrate check, or a BioPhsyical Profile on the baby. Every time, I held my breath until we found the heartbeat. A few times, she played hide & go seek with the doppler, and fear crept up so high in my throat that I cried.
At 34 weeks pregnant, it hit me that she was going to survive. We had gotten that far, and from there, if her condition started failing, they could deliver her. They could save her. Surgery was an option for her problems - we could save her. And so, the shopping began. I had nothing, other then a dress that we had picked out very carefully for her funeral. Gorgeous, tiny, pink and lacey, I never wanted to see her wear it. It was selected for her funeral. The negative emotion toward that dress, destinted it to the back of my closet. Even if she made it, I knew I couldn't handle seeing her wear it. Suddenly, my house was flooded with tiny, pink, lacey items. It was so foreign after being so used to my son's "boy" stuff. When I was 36 weeks pregnant, we had another amnio done, this time, to check and see if her lungs were ready. The doctor wanted to deliver her as soon as possible. If her condition failed outside of me, it would be much easier to notice & thus work towards fixing, then if I was pregnant. Finally, at 37 weeks exactly, on August 21st, 207 at 6:11pm, my daughter was born. Although initially her name was to Gbriella Danielle, we opted to give her a second middle name - Faith. Faith was all that got her into the world. Medicine couldn't do anything to save her, it was purely in God's hands. We prayed hard, and he gave us a miracle.
Due to problems we had in our pregnancy, the NICU team was in the operating room with us when we delivered. They evaluated her and said she was doing well enough to room in with us, instead of going to the NICU like we expected.
The first night, went beautifully. We snuggled & cuddled & enjoyed our time. I didn't even want to sleep that night, I didn't want to put her down. The hospital had a night time nursery and offered to take her for a little while, and I declined. I was happy just to have her...Too happy to put her down. I had been so sure I'd never get that chance. Effectively, I had already mourned her loss - every stage of the grief process, had been passed during pregnancy. And now, to be holding her, was a miracle. Absolutley a miracle.
The next morning, Dr. Allen, one of the cardiologists we saw for her while we were pregnant, did another echocardiogram.
When we was done, he came back to let us know Gabby needed to go to the NICU, as her heart had several problems, including a narrowed aorta (Puts pressure on the heart and, when the PDA closes, prevents blood from being properly oxygenated) and a hole between the two bottom chambers of her heart. We later found out there is also a hole between the two upper chambers of her heart.
Once she was in the NICU, Children's Mercy Hospital in Kansas City, Missouri, was called, and they dispatched a transport team. Due to plane trouble, they had to turn around, and a team from St. Louis came to get her & take her to Children's Mercy. About 8pm, at 26 hours old, my daughter was on a plane headed for a hospital three hours away. Watching them load her into the isolette she would be flynig in, killed me. I was so afraid I wouldn't see her again.
I laid in bed that night, and cried. I was alone, and I was scared. I wanted more then anything to have someone there with me, anyone. But I was alone. I woke up early the next morning, ate breakfast, and cried. It was all I was capable of. I took a shower, and laid back down....I put on some makeup, thinking maybe looking better would help me feel better. About half hour later, there was a knock on my door, and a woman came in, cheerfully announcing that she was there to take my baby's newborn photos. I burst out crying. Here, I was alone, I was devestated, and now she was here so blissfully unaware of the pain that my closed door was concealing. I told her my baby was gone, taken to Kansas City for heart surgery. SHe quickly excused myself, and shortly, my doctor came into he room. I was exhausted - I had been up all night, hurting, and hearing every other baby on the floor cry. Those rooms are far from soundproof. Although it was earlier then I was supposed to leave, my doctor agreed to dismiss me. I needed to be home with Alex & getting ready to go to KC much worse then I needed to be in the hospital. My discharge instructions were intensive, much more then for most c-sections, but, it was worth it...I was that much closer to leaving to see my daughter.
The next time I saw my daughter, she was five days old. The flood of relief that came fom seeing her, tiny & curled up in a bed in the NICU at Children's Mercy, was amazing. I had been on the phone with the doctors & nurses there multiple times a day, but, seeing her was just that much more comforting.
The doctors in KC decided to postpone surgery, and we went home when she was ten days old, making it home just in time for Alex's second birthday. I had been so terribly afraid that I wouldn't be home in time. September 20th, she was flown back to KC. Her condition was worsening. They wanted at that point to do the surgery and, the morning it was to happen, it was discovered that she had a urinary tract infection, caused by problems in her kidneys. September 29th, they put in a PICC line, and we got to bring her home on IV medication for the infection. Just before we were to go get the surgery scheduled, her condition took a drastic turn for the worse. We were flown, once again, to KC. She was supposed to have surgery on Thursday, but her red blood cells were so low that she had to undergo 4 transfusions to get things to an acceptable level. That Saturday, the doctor came in, on what was usually his day off, to do her surgery. Two hours after the surgery began, they came and let us know it was done & she was stable. They took her to PICU and we got to see her about 45 minutes later. She was swollen & sedated, and having problems with her blood pressure being too high, but, considering what she had been through, she was doing well. Five days later, we got to bring her home, feeling, for the first time in a long time, optimistic.
About a week later, we found out that during her surgery, half of her vocal cords were parealyed. The nerve that controls the left vocal cord wraps down around the major vessels of the heart, and then goes back up. Considering it was one of these major vessels, I think 'how' is probably rather obvious. Her left vocal cord was completely paralyzed. We were told that the right side would learn to pick up the slack, and we'd know if there was any permanent damage in 6 months to a year. When we asked if it could just heal, the doctor said that it was nerve damage - nerves don't regnerate. With a heavy heart, we accepted this, and were just glad that the surgery had saved her life.
At the check up, they redid the scope surgery that had been done to dx the paralyzation. Amazingly enough, her nerves had regenerated partially, and she had some movement in her left vocal cord. No, not perfect, but partial. And the rightside HAD learned to pick up slack.
There were then a few months of peace. Until Febuary, when Gabby had her first seizure. She was kept in the PICU over night, and then the next day, we got to take her home. Almost a month to the day later, she had another one. This one, meant an EEG and two nights in the hospital. The test showed no reason for seizures. She was started on Phenobarbitol. Abouta month later, another seizure occured. We went to the hospital and, since she was already on medication, we got to go home that night.
Since then, life has been smooth sailing. Lots of trips to doctors, lots of being over protective, nervous, and the like, but, healthy. And I thank God every day for that. To go from the point I was at in January of 2007, to where we are now...It's been quite a ride. God has blessed me immensely.
PICTURES RELATING TO MY PREGNANCY
5 Weeks - Basically, Post-Alex, Pre-Gabby
6 Weeks
7 Weeks
Papers from the hospital regarding the ultrasound - listed due date 9.11.07
8 Weeks
ER Sonogram that came with the first diagnosis of Hydrops
DR sono - face & body
DR sono - profile
DR sono - heartbeat
DR sono - Hygroma diagnosed
11 (yes, 11!) weeks
13 Weeks
15 Weeks
16 Weeks
16 Weeks - Day of Amnio - Face
16 Weeks - Day of Amnio - Profile
16 Weeks - Day of Amnio - Feeties
Former bloop name - someone accused me of being fake because my tummy got big as fast as it did.
Amnio Holes
17 Weeks - Mid Contraction
20 Weeks
21 Weeks
22 Weeks
22 Weeks
22 weeks profile
22 weeks it's a girl
22 Weeks - Foot
22 Weeks - face
24 weeks - the "longest" she could live
Celebratory 24 Weeks Dancing with Alex.
26 Weeks
"Normal" Heart
Gabby's Heart
24 Hours after the 26 Week picture in Yellow
26 Weeks - KC Dr. - abdomen (black spots in circle are kidneys - one's large, one's not)
26 Weeks - KC Dr - Can't figure this one out, STILL. Part of it's her hand.
26 Weeks - KC Dr - Hand
26 Weeks 0 KC Dr - Feet
26 weeks 5 days - What we did after the day of doctor's appointments.
28 Weeks - In labor, yes, I'd been crying.
28 Weeks
28 Weeks
29 Weeks
Explaining the Kidney
30 Weeks
31 Weeks
32 Weeks
35 Weeks
34 Weeks
36 Weeks
37 Weeks
Amniotic fluid from amnio to check lung maturity
27 Weeks Face
37 Weeks Profile
D-Day!
Delievery
Delivery
Delivery
She was cold and she was NOT happy about it.
Further pictures can be found in the entry "Purely Pictures"
 
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An adorable miracle baby
what a story. amazing 
Random; Wow. I found your diary via a comment left on Bloop Secrets about your daughter, so I read your front page, which lead me to this. That's incredibly amazing, what a miracle baby.