After 2 years of trying to get pregnant, we had just started menstrual cycle medication to regulate my cycle, as I have a sometimes 2 month break, sometimes 5 month break between cycles. The medication didn’t work, and I was worried, but then I received a call saying it didn’t work because I was already pregnant! The pregnancy went great! I was slightly nauseous some of the time, but other than that, I was thoroughly enjoying my pregnancy. All the checkups seemed to be going ok, but I was always worried about how small I was. I mean, at 2 weeks before pregnancy, people at my work still didn’t know I was pregnant!! There had always been fears throughout my pregnancy because there seemed to be a lack of fluid, and at times, there were periods of time where she wouldn’t move for 10 hours. I would always go in and get checked, and everything would be “fine”. All the ultrasounds came out normal, everything looked just great. About 1 day before delivery day, little Grace hadn’t moved in more than 10 hours, so we once again made the trip to the hospital. This time, I stayed…and they induced. They were really worried because out of 4 cavities that they regularly check for fluid, 1 had enough fluid to calculate from. So I was induced (slowly) and after 5 hours of being 1 cm dilated, they broke my water. They also had to attach a moniter to Grace’s head because they kept losing her heartbeat through my stomach, so they wanted to get it right from her head. I was on Pitocin for quite a while, and was wanting to go all natural, but the pain was just too much for me! They gave me an epidural about 7 hours into the contractions, and I was still just 2 cm. After that, the pain pretty much went away except for a sciatic nerve pain down my right leg that I would feel with every contraction. As the hours went on, I kept wondering when everything would just happen! When would I see my baby? So we had gone into the hospital at about 12 am, they didn’t induce until about 3 pm, and at around 12 am the next morning, I kept telling my husband I felt a major pressure “down there”. We kept telling the nurses, but there responses were all the same “there’s no way you can be ready to deliver. You were only at 2 cm. It’s just the contractions.” And then they would leave. Hm…that’s weird. You would think a mother would know her own body signals. So for the next hour and a half, I kept telling him I felt a major pressure “down there” like I need to push it out. He said he would wait until the nurse came in and tell her, and in the meantime, I asked him to reposition my pillow that was between my legs. He did, and what he found was pretty crazy. I was leaking fluid, and had been for quite a while, and when he told the nurse, she came in and checked me, and couldn’t get her fingers in to check for the head too deep, because there she was! That entire time, she had been in the birth canal! They screamed out to the hall for help, and within seconds the room was full of people, and they were telling me “DON’T PUSH!” I couldn’t help it though! As everyone got situated, and extra pair of people came in, and the doctor said to them, “What are you guys doing here? I didn’t ask for you guys to come.” And they responded, “we are just observing.” Ok, well I guess that was fine with the doctor, and at this point, we could bring in the whole hospital, as long as I got to push her out! At 2:09 am, Grace was born, but it wasn’t the “aw, she’s born, everyone’s happy” that you would think. She was thrown onto my belly, blue as can be, Daddy was told to “hurry up and cut the cord” and she was taken over to the warmer. For 12 minutes, I cried, shaking, while they worked with her. She wasn’t breathing much. She didn’t cry. Oh what I would give to have her cry. The doctor said something about the placenta being detached…that the umbilical cord was too small to have given the baby enough nutrients throughout the pregnancy. That I was starving her while I was carrying her… Gosh those 12 minutes went by so slow. They wouldn’t let my husband take any pictures of Grace…finally, she cried a quiet cry, and her color was back to normal. Her nose had been pushed to the side from being in the birth canal for so long, and it was swollen and she couldn’t breath through it. Poor little thing having to already learn a different way to breath properly. She was taken to the nursery to be observed for a long time. We had to stay longer in the hospital than normal because of the breathing problem with her nose, and they said Grace acts like a starved baby, trying to grab onto anything with her mouth. And to think that the only problem I thought we would have was her breathing issue with the nose…and that problem would right itself with time, never to be an issue again…
At three months old, I had noticed a mark above her butt crack that worried me. It was an indentation and a red dot above it. I was worried, of course, so I went to the doctor and asked him. He said, “Hm…I want a neurosurgeon to look at this.” Oh Great. That must mean bad news… So off we went to Oakland to see what’s going on. Right when the doctor looked at it up there she said, “This could very well be a tethered cord. She needs to have an MRI, and most likely surgery.” WHAT??? I thought babies were supposed to come out perfect? What are you telling me? We had to wait till she was 6 months to have the MRI of her spine, and we found the results to be less than appealing. She did in fact have a tethered cord, and will need surgery. I cried. So much. To have the guilt on my heart that I probably caused this because of those pills I took…If I only would have taken a pregnancy test BEFORE taking those pills like the doctor had told me!! But not only were we worried about this surgery…she was also very little, and wasn’t gaining weight enough. And her head was SO SMALL?! What’s going on? Isn’t their head supposed to grow with their body? Isn’t it supposed to look bigger than the body for a while? Why isn’t hers? But that was pushed to the side. Surgery came April 1st, and we were there for little Grace’s first Easter. My poor baby…after the surgery, and 25 stitches later, she was sleeping in her bed, sedated so she could rest. Puffy from the anesthesia, and swollen from the surgery, my little marshmallow lay peacefully resting. The surgery went well, and the spine was in fact extremely tethered, and it was a good idea to do the surgery. Now, we wait. And hope and pray it doesn’t re-tether. We spent 6 days in the hospital, and I finally got upset enough and barked at a nurse because I just wanted to go HOME. They wouldn’t let us go because Grace hadn’t had a bowel movement, and because she was having to be catheterized. Well, we had already been taught for 2 days how to catheterize her, and I did it just as well, if not better, than all those other nurses. Grace was back down to her normal size, and the stitches were very clean and healthy. So I want to go HOME. The nurse I barked at got the neurosurgeon, who then said, “why are they still here? They need to be signed out, because I know they will take great care of her.” Oh, yeah, a doc on MY side! So we took our little one home and just spoiled her with love. So that was one hurdle we got over. But the worry never ceases…that head is still so small on my little girl… which we found out later was because she has Microcephaly. Gosh…another thing my little girl has to deal with. I’m so sorry Grace. I’m so sorry I took those pills…was that the reason you are like this? I don’t know. But the Microcephaly was the least of our problems. Because I knew she had this, I investigated, as I always do. I read that there could be brain problems, and I was worried. Grace already had esotropia, amblyopia, and possibly anisocoria, and gosh these hurdles just never stop coming to us. I asked her pediatrician to order an MRI of her brain, but he denied it. So I forced the issue, because I’m the mother and I know what’s best. Finally, he caved, and ordered the MRI. So down to Roseville this time! WOW! They have somewhere closer for us to go. What a relief. And oh…hm…obviously mommy does know best. Now we know Grace has partial Agenesis of the Corpus Collosum and Hypoplasia of the Cerebellum. Gosh, what more could this little child of mine have to deal with? At this point I’m so mad. I don’t understand why my child has to deal with this. The days go on, and the months go on. We try to wrap our heads around what’s going on, but it’s just difficult. Grace is as bright as can be, and so happy and loving all the time. She doesn’t even look like a child that would have issues! But I still didn’t feel right about this. I still felt like there was something wrong, something lingering. And I wasn’t the only one. I do recall the neurosurgeon saying, “There’s something else Amanda. There’s something underlying that we haven’t found, that is the cause of all this. What we don’t know is what it is, and how bad it is, or if it’s worse than everything we know already.” Wow. That’s wonderful to hear a doctor say. Gosh, that makes me feel so secure.
When Grace was around 8 months old, I realized we could get genetic testing done (I found out online) and so of course I jumped at that idea. It was a blood test…hm that’s not too difficult. So we got that ordered and taken care of. Wow, we have to wait 6-8 weeks? Well, if we do that, we will be in Montana on a family vacation?! How will I be able to have fun knowing something could be found? But I went, and we had fun, and it was a wonderful trip. But of course, I just had to check my email on the day before we were leaving. I should have just waited, so the whole trip would have been fun. They found something. It’s called 7Q36 gene deletion. It’s super rare, and there’s no cure. A part of her gene is deleted, which has caused everything else that’s been going on. Great…I’m glad we found the issue, but wow, what a fun killer.
Grace is now 1 year old. She’s in therapy through Alta Regional, Sacramento County Office of Education, and Easter Seals. She receives physical therapy every other week, Infant Education once a week, and will start receiving Warm Water Therapy once a week. She is developmentally delayed to a 7 month age, but is such a fighter, and won’t give in. She is only inchworm crawling. She doesn’t crawl on hands and knees, she can’t stand on her own, doesn’t step forward when we stand her up, and just recently learned how to sit up straight without tripoding. She has maintained a weight of 17 pounds for three months, and her pediatrician has begun to worry, so she is on whole milk daily, Carnation instant breakfast as much as she will drink, and butter with every meal. She is mainly on formula, with baby food as much as she will eat, and some adult food. She hasn’t gotten the concept good enough about chewing and swallowing. She is still in the “play with food rather than feed myself the food” phase, so we are slowly incorporating adult food into her meals. She knows how to mimic really well, and can say “dada” and “mama” but not because she knows who we are, as well as “baba”, “out” and “nana”. She recently learned how to wave, and will put her hand to her mouth for “blow kisses”. She also just recently learned how to clap.
I don’t know what the future hold for Grace. I don’t know if she will ever walk, as we found out that she only has half her sacrum. We found that out the same time we found out about the tethered cord. Hm. All this news is overwhelming. I don’t know if she will ever crawl normally. I don’t know if she will ever talk, read, go to school, or even comprehend everything around her. I fear that she will struggle through her life each and every day. This is a new experience for me, as well as for my husband. We still cry about it at times, we still get angry about it too. I still blame God, but I know He’s here with us, helping us. I still blame myself. A lot. I guess that’s just what mothers do though…we have to blame someone, so why wouldn’t it be us, since we carried them. In a week, Grace will have another MRI, and if there is more fluid in her spine, she will have to have another surgery. After the first surgery, they found there was fluid still in the spine…oh I hope there won’t be another surgery. But this is our life. And whatever comes our way, we will be strong for Grace, and for each other.
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