This blog is meant to be a record of a journey of a special little girl showing everyone what amazing things she can do. This little girl has been defying odds and breaking rules from there very beginning.
The journey has had its challenges from the beginning when we Just after learning that I was pregnant I had to go to the ER were I was diagnosed with extremely low potassium and a threatened miscarriage. I had a feeling that something bigger was going on but everyone tried to assure me that everything was just fine.
After my first appointment with the midwife she wanted me to see the MFM and get cleared because of my ‘advanced maternal age’, she also put in orders for me to have some bloodwork done. She said it would test for genetic disorders and give us the sex of the baby… win,win or so I thought. I’d had several blood tests done before with never any issues so it never occurred to me that something would pop up.
We went to the MFM office for our first ultrasound. I started crying when the tech left the room and told my husband that I knew something was wrong. He tried to comfort me and assured me that our dancing baby was healthy as could be. The doctor came in and took some more pictures before asking us to come to her office.
I knew that something wasn’t right. She said our baby had a brain anomaly, a heart defect, and extra fluid on its neck. Any of these alone would not be a major cause for concern but all of them together suggested either Trisomy 13 or 18. We were told our baby would most likely not survive to term and if it did the outlook was not very good at all.
She sent us to talk to the genetic counselor who tried to convince us that we didn’t really want/need a child with such a disability. He told us all the things that these children couldn’t do but I promptly told him I already had a child with Down Syndrome and I knew that he was capable of doing almost anything he set his mind to do. We went ahead with the bloodwork that had been ordered but refused all invasive testing.
That next week was the longest week of my life as I waited for those results. We had already decided that termination was not an option but we were desperate for answers as to what was going on. When the call in saying the test was negative for Trisomy 13 and 18 I was so relieved. The counselor then said it had a high positive for Trisomy 21 (Down Syndrome) and I said oh, that’s wonderful!
He must’ve thought I was crazy because when I asked about the gender he asked if I really wanted to know and if I had understood what he had told me. I repeated it back to him, assured him that I understood, and then asked about the gender to which he replied, ‘it’s a girl’. I said thank you and hung up the phone.
I cried happy tears and then I cried sad tears. I was happy that our little one didn’t have one of the other disorders as those are almost always fatal and many babies don’t make it to term. I was also sad because our baby wasn’t ‘normal’ and I was afraid of what life would like for her. I was afraid she wouldn’t be accepted by others but I was so wrong! Normal?? What was I thinking? Normal is just a setting on a dryer, not a way to describe a person!
Then the country was put under pandemic protocol during our pregnancy and restrictions were put in place that did not allow me to have my husband with me at appointments. It was very stressful not to have a support person there during those difficult days but we made it through.
Our pregnancy was very difficult as I had several health issues arise with my heart, kidneys, and thyroid. I was also diagnosed with severe polyhydramnios due to Shyanne’s duodenal atresia. The extra fluid made everything more difficult. I spent nearly 3 months in the recliner or the bed due to complete exhaustion and heart issues related to the pregnancy.
We had also received a high probability that our little girl would have Down Syndrome and we received a Dandy Walker Malformation diagnosis. This dual diagnosis is quite rare and one of my OBs was convinced that our daughter would not have Down Syndrome.
Thankfully we had a lot of friends and family who came up with ways to support us during those days. They helped keep our spirits lifted when the days seemed grim.
It seemed that every appointment brought more grim news and the constant recommendations for termination. It was a very dark place to be when your doctors are suggesting that you are being selfish for keeping your child. Some of them insisted she would be a vegetable if she survived birth. Well, she’s the cutest, happiest little vegetable I’ve ever seen! I’m so happy they were wrong!
Some of the specialists offered hope for the areas they would be treating but they always warned me that there could be other unknown complications in the other areas. I gobbled every sliver of hope they offered and clung to that for dear life.
I prayed like I’ve never prayed before. I questioned many things and sometimes wondered if we were making the right choice. I knew in my heart that I had to trust God because he, and only he, could see the BIG picture. I had to trust that he had a reason for all of this and let him work… that was so hard on some days.
There were many days I just wanted to go back to bed a cry myself to sleep but I didn’t have the energy to walk to my room. If I had gotten not bed I couldn’t lay down because the extra fluid made it next to impossible to breathe. I was miserable in so many ways but determined to keep our little girl as safe as I could until she was big enough to survive on her own.
The week before we delivered I saw a specialist who gave me the ‘OK’ to have the baby. He could tell I was barely hanging on and he assured me that I had done a wonderful job keeping her in as long as I had. He said she was already bigger than most of the babies they dealt with and she seemed to be very strong despite her issues.
I felt a sense of relief after that appointment but we made it another week before my body decided it had had enough. It was no longer safer for her on the inside so she was born via c-section. The whole birth experience was traumatic for me and I haven’t really told anyone just how terrified I was for our baby and for myself. I honestly didn’t know if we would both come home or not.
I wasn’t able to see or hold her for over 24 hours because of complications I had after delivery. That was very hard and I know I aggravated the nurses by constantly calling to check on my baby but I was going stir crazy being bedridden for so long! I insisted on going to see her when they finally let me out of bed at 12:30am the next day… then I had to wait another then two hours because they had taken her for some testing. Holding my precious baby was the best medicine a person could ask for and I didn’t want to ever let her go.
I came home about 4 days after delivery weighing almost 40 pounds lighter! Leaving without my baby was one of the hardest things to do even though I had tried to prepare for it. I think somewhere in my brain I had secretly thought everything was going to be OK and she might come home with us right away.
Making the almost daily trips back and forth to the hospital was exhausting and stressful. It seemed we were always making one step forward and taking three steps back. She had surgery at one day old to repair her duodenal atresia and then it was several days after that before she was allowed to try a bottle.
She had so many tubes and wires it was difficult to hold her or change her diaper. She didn’t even wear clothes until she was about a month old. Then she had surgery to have a Gtube placed because of her feed g difficulties.
That evening we got a call saying she had been exposed to Covid by one of her nurses. I cried and cried as we had just recently lost our stepdad to it and my mom was in the ICU fighting for her life because of it. They quarantined my little baby and isolated her in a small dark room.
I broke down the first time I walked in and saw her all alone like that. I had to put on protective gear and wasn’t allowed to touch my baby skin to skin. I just held her as close as I could and rocked her for as long as I could. I had the nurses put some music on for her because she just seemed so sad and confused. I mean she just had surgery and then she got stuck in a room all alone with no one to hear her cry… it was pure torture.
To make matters worse was that once I left her room I wasn’t allowed to go back. I was told to go straight home and not stop anywhere for anything thing.
Thankfully she was allowed out of isolation the next week and then she had her third surgery for a VP shunt to relieve pressure on her brain from the hydrocephalus. She was scheduled to come home that weekend but we had a few issues and they decided to keep her a few more days.
She finally came home exactly 6 weeks after being born. That was like winning the lottery!
The next few weeks were stressful and I worried about everything she did or didn’t do. She has a nurse here three days a week which made me feel a bit better.
In mid-October we noticed that she was having some me issues and after several doctor visits and a trip to the ER we learned she was in heart failure at just three months old. She was admitted on a Thursday and had open heart surgery on the following Monday, then we were back home the following Sunday! She is such a warrior!
The past few months have been going pretty well and she recently had her Gtube removed. She is now just a happy healthy little girl! She is a blessing to everyone she meets!