Monday, April 18, 2011
Below is the story of little Isabella, who is yet another one of God's precious miracle babies. Since beginning this blog, I've come across more and more people with positive outcomes in situations of cystic hygroma, Turner Syndrome, and CHDs. I also continue to come in contact with more and more pregnant moms in the same situation I was in, who need to hear these encouraging stories. As I've said before, it was difficult for me to find any positive news when I found out about my Avery, so I am so thankful to share such awesome journeys with other mothers in need. The terms "septated" and "large cystic hygroma" are so very familiar to me! While not all outcomes will be positive, we should know that there is always hope and comfort in our Lord, Jesus Christ. Each and EVERY life has a purpose, regardless of the length of that life. Spoken so beautifully below in Cheryl's words, these babies are eternal. Life is not for us to understand, as hard as we sometimes try, and we must trust in our Creator to have control in our uncontrollable situations. I hope you enjoy reading about this precious one- I know I did!
In the words of mommy, Cheryl Linder
I am 47. Isabella was a surprise pregnancy. I worried because I had some wine in late November and early December before I knew I was pregnant. This was preorganogenesis, but when anything goes wrong, you are so afraid that you did something to cause it.
There was a 95% chance of miscarriage in the first trimester because of my age and the chances of getting pregnant naturally at 47 are slim to none, so I certainly wasn't expecting to become pregnant.
I waited for 11 weeks before making a doctor's appointment. I certainly didn’t think that I would really have a baby.
The heartbeat was seen at 12 weeks and the baby appeared normal, but my home OB's sonogram has a very low resolution, which I didn't know at first. Later, my quad screen came back with a 1 in 4 chance of Downs Syndrome. I didn't think anything about it. They are not very accurate. I was still hesitant to believe that I wouldn’t miscarry due to my age, but beginning to be more hopeful.
At my 18 week visit with the perinatologist, they did a sonogram with high resolution and they found a large cystic hygroma and an echogenic bowel. And it was a girl. Her head circumference was measuring a few weeks behind as were her long bones. Her overall measurements were a week or so behind, He couldn't see her heart or face. He classified hygromas as and small, medium and large. It was 1/3 to 1/2 the size of the babies head and extended all the way down her back. The perinatologist said that the chances of survival were slim to none and offered me an abortion. He wanted to do an amniocentesis, but said that it wouldn't help the baby, so I declined.
He said that the hygroma was septated and that those almost never resolve even when they are small, but that he had seen things he didn't think would get better get better. But he didn't want me to have false hope. I told him hope was not a bad thing. After we left his office, I broke down in tears. I had finally decided that I really was going to have a baby and I was really excited. Now it seemed that I would lose her. I was heartbroken. I researched online and found that the statistics for survival of a small, nonseptated hygroma were not great, but large, septated hygromas had almost no chance of resolving. I prayed to God for her life. We named her Isabella, which means, “God’s promise,” and her middle name is Grace and encompasses all that God is , His power, love, mercy, forgiveness, healing and unmerited favor.
I wanted anything I could hold on to. I prayed that God would spare her and prayed almost daily for some sign from Him that she would be OK. I never really felt that I could hear God clearly about her. But as time wore on and she was still with me, I began to feel that He might be saying, "Yes."I lived for her kicks and flutters.
I also found the website, benotafraid.net. I found the story of Louise Foster Flannigan and her daughter, Rosie, who had a cystic hygroma with hydrops. And Laura Dawson was pregnant with her baby Rosie as I was pregnant with Isabella. Laura’s baby’s hydrops was resolving. I watched as week by week her Rosie beat the odds. There was hope
Every other week, I would listen to Isabella’s heart, still beating and hope that the hygroma was going away. At around 22 weeks at the perinatologist, the hygroma was no worse and possibly better. The long bones and head circumference were again behind as were her overall measurements. She might survive. Then he said that he thought that the baby had trisomy 13 or 18. Those are fatal chromosomal abnormalities and I was devastated. I couldn't understand why God would give me a child to take her away.
As time wore on, I understood that she was eternal. That I would always have her even if she didn't survive to term or after. That she was fearfully and wonderfully made just like my other three children and that I would have her for an eternity even if not here. I prepared for Down's Syndrome, T-13, T-18, Turner's and the death of my baby.
As I read about Down's Syndrome children, more and more friends came to me and said those were the sweetest children ever born. I read story after story of how these children blessed their families. I read stories of mother's that lost their babies to T13 or T18 and heard how their babies blessed them no matter how short the lifeI read stories of how all these babies blessed their mothers even if they didn’t make it to viability. They were loved, wanted, and eternal. ( And I read stories of survival with T13 and T18, babies that beat the odds and were so loved and cherished. My friend, Julie Stahl’s baby, diagnosed with T13 inutero while I was carrying Isabella, is thriving and developing normally. As it turns out, she has a partial T13 and is not as affected as first diagnosed. I read Rosie's story and Laura's stories again and again and felt hope that a hygroma could be overcome.
At 24 weeks, her echo of her heart appeared normal.
At 26 weeks, my oldest daughter, Sarah, got married. My youngest daughter, Rachel, sang a song at the wedding that she had been singing to Isabella and as she sang, Isabella kicked the entire song. The song was “My Shepherd Will Supply My Need.” I knew she heard it.
At 28 weeks, the hygroma was completely gone. I believe this was the visit where he said that one of her kidneys was polycystic and that the other was probably functioning, but that he couldn't guarantee what would happen with her kidneys. Her measurements were following the same pattern with an overall 33rd percentile. He again said that he thought the baby was T13 or T18. The sonographer said that she thought her feet were swollen. I certainly hoped so as that was a sign of Turner’s and not of T13 or T18. I was still devastated that he thought it was T13 or T18. I knew that God would bless me with either outcome, but so wanted to keep my Isabella. I prayed for what I wanted, a daughter to keep for a lifetime.
At 32 weeks, her measurements fell to overall 15th percentile. He thought she had rocker bottom feet and again said that he thought she was T13 or 18. Her head and long bones had fallen even further behind normal. Again the sonographer thought the feet just swollen. I was suffering from preelcampsia and there was a possibility that the placenta was not functioning optimally with her further decline on the growth chart.
She was delivered at 34 weeks due to preeclamsia. The placenta was 25 to 30 % abrupted and I would have lost her at 40%. Two of the happiest moments in my life were when I heard her cry when she was born, she came out furious and screaming, and later when the perinatologist came in and told me that she appeared to have Turner Syndrome. I cried tears of joy. I would get to keep her. She was 4 pounds 1 oz. and 17 inches long. Isabella went straight to room air. She had to have some time to be able to take nourishment. They started with 5cc every 3 hours and in 10 days had her to 2 oz every 4 hours. She came home at 11 days old and 4 lbs 6 oz.
As a tiny infant, she is a beautiful baby and a joy to have. We all adore her and can't imagine life without her. She is so sweet to hold as she snuggles into you when she sleeps. She loves to be held, talked to and sung to. She expresses her wants clearly. She makes the sweetest sounds and squeaks when she is enjoying being fed and snuggled. She says "Unh-unh" forcefully if you do something she doesn't like. And of course screams her head off if you really upset her. We all exclaim over her all day and she never lacks for a willing set of arms.
Don't give up hope. The doctor's are often wrong. They don't know your baby’s future.
Sing to your baby. Read to your baby. I did. Do all the things you would like to do with your baby now. Enjoy your baby and your pregnancy as much as you can.
Don't let this steal your joy. I am sorry for the times I let the trial steal my joy. Enjoy this baby. You may have all you want and more. It can be better than you ever imagined.
And your baby is eternal, whether held here for a short time or for a lifetime.
Update April 2011:
Isabella is now 9 ½ months old, 8 months old adjusted for prematurity. Her heart is fine. She has one kidney that is slow to drain, but that seems to be resolving, it was not polycystic, it was hydronephrotic, meaning that it was not draining properly, but fully functional. She sits alone, babbles, says Mama, and is still the light and joy of the entire family.