Here we are, at yet another branch in our journey. We found out that we are expecting yet again!! My tentative due date is August 16th. I came into this pregnancy not really very excited about it. I don't know if it's my age, the really strong first trimester ailments or what, but knowing there would be 9 months of not feeling like myself on top of more weight gain to lose, I was dreading it. The first trimester was very rough-and it lasted almost the first half of the pregnancy. I was very nauseous as well as extremely tired which made me very moody!! Everyone just chalked it up to having three boys to "chase around", but I really don't see much of a difference between two and three-especially when your #2 is Titus!!
We found out early with Solomon that he was a boy and decided to go back to Miracle in Progress to find out this time as well. What a surprise we got when those words came up on the screen IT'S A GIRL!! We were overjoyed and overwhelmed at the same time. Matthew didn't think it was possible!! We already selected a name, but didn't plan on sharing until she was born.
We excitedly awaited each midwife appointment and wondered how close she would come to her due date. Her brothers were pretty spot on so we guessed she would be too. We were planning this time around getting the full ultrasound mainly because I will be 39 when she's born. We planned on going in on the same day as my appointment with our midwife at 17 weeks. The tech was all business but did confirm our knowing she's a girl. She measured small-11 days, and he couldn't see what he needed to so he advised us coming back in 5 weeks. He did say what he could see looked good. We were originally not going to do the repeat ultrasound, but something told me to. I just thought it would be a nice excuse to see our girl again. So, at 22 weeks, we went back. Matthew stayed with the little kids(I was babysitting) and I brought the older two to see their sister. She seemed to take an extremely long time, but I figured she was giving us a nice look at baby.
When we got to our midwifes house, she sat us down right away and told us the scary news about our little girl. They found several things on the ultrasound that made her very sick. She found several of her abdominal organs up in her chest cavity, her heart pushed to the opposite side it should, and her lungs potentially squished as they grow. That told the ultrasound tech that she has a hole in her diaphragm. It's called a congenital diaphoretic hernia(CDH). Thankfully, as serious as it is, there is surgery she can have at birth to repair the hole. She also found something unusual in her brain, but couldn't pinpoint what. So, because of these abnormalities, it isn't safe to have her be born at home as she needs to be on a ventilator right away to help her breathe. So with sad hearts we left our midwifes house for the last time.
The next day, I called a good friend from the Phoenix area, whose husband was my doctor years ago and asked her if she or her husband knew of a high risk OB in the area. I explained the situation, she asked her husband, and recommended Phoenix Perineal Associates. I called and they didn't take my current insurance. Thankfully, as my birthday was coming up, I could switch to the one they took. So I then had to call and switch my insurance, but in the meantime I needed to be seen. One of the fabulous ladies from PPA recommended the Women's Institute at the university hospital as their doctors are there once a week to see patients. Unfortunately because it's also high risk, I needed a referral. So I called my midwife and asked her to fax them over with my prenatal records. What a crazy day that was! I heard nothing and called to check several times. One of the ladies at PPA told me the university hospital also has an OB Triage, which is like an ER just for pregnant moms. She suggested I go there as a way in if I was having a hard time making an appointment. So that's what we did.
We went in to the OB Triage and when I talked with the woman in admitting and told her my situation in trying to get an appointment, I showed her a copy of the ultrasound report my midwife gave me and a nurse told me that they wouldn't let me leave without being helped. I felt such relief!! I got an appointment for the following week on the day a PPA doctor would be in seeing patients as well as an ultrasound and we headed home.
We both questioned and prayed about why this could happen to our family? Well, this side of heaven we won't know the why's, but if God is using this time in our lives to bring us closer to Him and to teach us to trust Him, I definitely want to trust!!
The ultrasound at the women's Institute showed what we already knew with her CDH, but the radiologist saw something a bit different on her brain. Something wasn't right. After the ultrasound, we spoke with the doctor for quite a while. He said they could do the surgery to repair her CDH, but the surgeon wouldn't do it until she had her chromosomes tested to see if what was abnormal about her brain was chromosomal or not. I could do an amniocentesis or wait until she's born and they could do bloodwork. We opted for the amniocentesis, but to wait until I am further along as the doctor mentioned a risk of my water breaking. I made a follow up ultrasound to check her growth for a month later.
This ultrasound showed much of the same so it didn't take as long. After this my new insurance kicked in so I transferred over to PPA. I had another ultrasound as well as a "new patient " exam.
Nothing new in the ultrasound front except for my amniotic fluid levels increased even more. I mentioned to the dr that came in during my ultrasound that I wanted to set up a time for an amniocentesis and she said, okay, we can do that right now!! I was surprised but ready to know. When you love your child, you will do anything for them. This is one of those things. It was the most painful torturous experiences I have ever had. But I did it for my baby. Before she started we talked about removing excess fluid, but when the time came, I was in too much pain so she didn't.
The results came in two days later as promised and her DNA showed an extra chromosome #18. It is called Edwards Syndrome or more commonly known as Trisomy 18. We were given no hope and no options other than if we want to hold her she would just pass away at birth struggling to breathe and suffering. If we want to spend time with her they would intubate her, but the doctor said we wouldn't get to hold her. I found a support group the next day and saw many children with T18 that were not only several months old, but several YEARS old!! I finally saw hope. Unfortunately, the doctors don't have the same hope. Because of her T18, the doctors assume she will not live long after birth. None mentioned any possibility of her survival. Our next obstacle is meeting with the neonatal team at the hospital I plan to deliver her in and letting them know we want to have the surgeon plan on operating on her CDH, and after we have an appointment with the doctor from PPA and we plan on telling her what we plan then. We are praying that the doctor and neonatal team at the hospital will be supportive as well as a surgeon that will take us seriously or even better a believer that knows that life is not in his/her hands, but the Lord's.
To be continued as the pregnancy progresses and we welcome Claudia Joy Hall to our family...
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