It's been almost three weeks, three weeks since a day that we had planned so carefully and prepared so happily was to come. There was to be a party, we planned a cake. Invited a couple friends. We took our children with us that morning. I made sure each one was clean and looked adorable to see their new family member for the first time. So much anticipation was Andi going to get the sister she had been praying for or were we going to have a little boy join the ranks, either way we were thrilled. I had kept myself busy that weekend thinking of our little one. I felt it was a little girl, I knew one was missing from our family, so I wanted to do a pink punch at the party, but what if it was a little boy! I couldn't have pink punch for my little boy! Orange Julius that would be perfect, didn't show any preference for a boy or girl. Those were the silly things I had been thinking about before that morning. We went into the doctors office, our ultra sound was first. There was our baby! So beautiful and perfect! Andi just kept looking at our little baby so excitedly! Something was wrong though I could tell, I could see it on the Ultrasound techs face. She was hardly talking to us, when she was usually upbeat and telling us all about what we were seeing. But she didn't say anything so I put it out of my mind, and just enjoyed watching her little heat beat. She finished and the kids were restless so Rob offered to take the kids to the car as the visit with the doctor is usually quite short after that. I sat waiting for 40 minutes for the doctor, my heart was pounding my children were in the car with Rob. I had this feeling or thought come, something was wrong something was wrong with my baby in a way that could not be fixed. And then a second thought; this is not your last one. I was almost in tears, the waiting was killing me, how were my children doing out there, my poor husband, they should have just come in with me. Then a nurse walks in and tells me the doctor just left to go deliver "Can you wait 20 minutes?" Rob was supposed to go to work in a few minutes, we already had waited so long. I explained to her that I had already been waiting and that my children and husband were in the car waiting for me and that I could not. She said she'd be right back and that my other doctor would be in to see me. A few more minutes past and then he came in, and he starting telling me about my baby. "We're seeing a few things on the ultrasound that aren't right, and unfortunately when we see more than two or three of these things it doesn't look like your baby will make it." He begins to explain all the abnormalities with our baby and asks if there is a time that my husband could come in so we can all talk about it together, I have silent tears streaming down my face, I tell him that he's just out in the car with our kids, they send a nurse out to sit with our kids so Rob can be with me and tell us the next steps we have to take for our little baby. Rob comes in unsure of why, because he can't stop thinking I just saw the heartbeat what could be wrong? I again hear the grim diagnosis of our little one and they tell us we will immediately want a second opinion and want us to see a high risk specialist as soon as possible. We ask if they were at least able to see if our baby was a boy or girl, they tell us that she is just too swollen, and that we can just leave no need to check out with the ladies at the front that they will take care of everything including making the appointment with the high risk specialist and will call us as soon as they have everything done. We leave unsure of what to tell the kids. Rob takes the day off work and we talk to our children about our little one and let them know that the baby is sick, but with few answers for ourselves we can hardly answer theirs. That day was spent in prayer in gratitude for our little one, asking for peace and comfort. And a miracle. All day long the tears would come and go, we sent a text message out and told them that we wouldn't be having a party that night, they couldn't see the gender and nothing else. The appointment was set for first thing the next morning, thank heavens because I don't think that we could have waited any longer. We left our oldest children with our neighbor as we drove bright and early to Idaho Falls. We saw the ultrasound, they explained in greater detail what was happening with our little one. She has cystic hygroma, two large cysts growing on the back of her neck that are filled with fluid, that fluid is leaking into her cavities around her lungs and heart. The pressure that puts on the heart will eventually stop it. It's also what is causing her to be so swollen, and we still couldn't see the gender. They wanted to do a test that would require amniotic fluid, however she had very little. Her cysts were pushing her little head against me causing her to only have access to about 2 tablespoons of fluid, and if we tried that test we would most likely only seal her fiat. So they asked if they could do a different blood test, one where they would try to find enough of my child's blood out of mine that they could find the cause of her cystic hygroma. They told us it could be one of three chromosomal disorders. Only one of which would give her any chance at life. Because of how swollen the baby was we couldn't see all of the vital organs, we had no idea. They told us it would be a huge miracle if she made it to delivery, and that we could have anywhere between hours and months with our little one. We left feeling like we had more questions then when we went in! We sat most of the day feeling every kick every movement we possibly could. We chose names, I started to work on crocheting two small blankets, one if it was a boy, one for a girl. Planning for the worst, and still hopeful for the best. I had to go back into my doctor's office in Rexburg the next day to discuss the specialist findings and to come up with a plan for our baby. As we went in they told us that they believed with from what they had seen and with the specialists findings that our baby had 1-2 weeks top and then I would have to go in a deliver a child I would never hold alive. They gave us the option of being induced, for my health. I couldn't do it, I couldn't think of ending that sweet heart beat no matter what. We asked for an ultrasound so that we would be able to see her just once more alive. The ultra sound tech was so sweet she just stayed there till after 6pm giving us almost an hour long ultrasound. We saw her beautiful hand it was so perfect it looked just like Nuel's tiny and chubby. She made us a video and printed off pictures, I am so overwhelmingly grateful for them. Because they only gave her a couple of weeks we were to come in every day to every other day and check her. We waited on pins and needles to hear the results of the test, find out if we were having a girl or boy. On Wednesday two days before we were supposed to hear back (at the earliest) I got a call from the specialists office. It's a girl, we were having a little girl we had chosen a girls name before we became pregnant, but it wasn't fitting for her. We chose Evelyn Grace Doty. Evelyn was to be the middle name originally it means life, and she has truly given us new life and new purpose and new hope. She has Turner Syndrome, the only one that gave her any chance at life. The doctor asked us how bad my bleeding or cramps were, I told her I haven't had any, that she's an active little girl and that Rob was still able to feel her. She was very surprised, and said who knows maybe she's resolving her cystic hygroma. They wanted us to come back in and see how she was doing with them as soon as possible which happened to be Monday. We were so excited once again, ignoring the fact that we both had felt she would not make it and that was okay. We still prayed for a miracle ignoring the fact that Evelyn was already a miracle! We got into the office and had to wait for about an hour to be seen! We were dying. We got in there and as soon as they started the ultrasound I knew. I knew a lot of what they would tell me and I knew she would not make it. The specialist began to explain that she was in critical condition and that she would most likely pass within the week. He explained that the swelling had gotten significantly worse than it was just the almost two weeks before. She was so much more swollen. The fluid was pooling and was continuing to cause problems with her major organs. Instead of seeing four chambers to her heart, two were being completely cut off, leaving the other half of her heart to work much harder. The doctor apologized for the bad news and asked if we had any questions. We really didn't have any. We left quickly and go to the car and just wanted to break down. That was it. There was no way for her to make it through this and we knew it. Not because it was impossible but that a loving Heavenly Father was looking out for us and taking care of us and it was not best for her to come right now. Evelyn is our little girl we know that she will be part of our family forever. We have been so blessed throughout this experience and even though it's hard and it sucks, we have been able to feel the love of our Heavenly Father. She has changed our lives forever.
Written Days Later...
Some days are better than others, some days it just smacks you in the face that it could be my last day with Evelyn. That it might be the last kick I ever feel. However I am continually reminded that we hope to endure things, that trials are all blessings and all that all we go through is necessary for our salvation. And I am so blessed to have my wonderful Hubby to be there with me, that we can support and lift each other up. This is an experience that a loving Heavenly Father has picked out just for us and our family, even though I am definitely not the first to experience this and surely not the last, everyones experience is still different and this is tailor made for us, to give us experience. I am so grateful for it. But I am still so scared, I am so scared to deliver my sweet child. I am terrified of saying good bye for a time when we lay her to rest. I am still taking it one day at a time and pray for her continually. I don't want her to feel pain and most of all I want what is best for her, and I don't know what that is, there is only One who does and His will be done.
She is continuing to surprise everyone with the fact that she is still here at all. Thank you to all who have prayed for, fasted for and put her name in the temple. She is fighting, she is fighting hard to stay with us a little longer.
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