Wednesday, February 29, 2012

Reality Sets In

So, after a long trip to NYC (thanks to my mother in law), I am back to the Delta and back to reality. Oh did I mention that while in NYC, I had my purse stole with everything I own in it, including $1000 cash and a new camera?! On the way back, I received a email from a friend of mine that gave me her birth plan from Baptist in Jackson. She too, had a Trisomy 18 baby and was given the same prognosis. I have been wanting to see this plan since I spoke with her last. This, to me, was some direction and gave me something to plan on. For everyone who knows me, knows that I am a big "planner". I have always been one who likes to know what to expect and when to expect it. So, this birth plan, was a tenative guideline to what was to come, if my baby girl makes it to birth. This also, made me aware that there are many things I have yet to plan. I in turn, called my previous co-worker and asked her what pediatric hospice care do they recommend. Many of you may see this as sad, but the thought of being able to bring my baby girl home brings comfort to me. I spoke with a hospice agency that says they "deal with pediatrics" and this was comforting at first to think that there was someone in Greenville that did this. I am sorry, but I know that when it comes to my children and emergency situation, I may not be able to completely impliment all of my nursing skills to their full advantage. This is another thing that I pray for, strength wise.

After yesterday and visiting with this hospice agency, I am not sold on the idea of this particular agency. The director seemed so sweet, but the fact that there is a limited nursing staff, scares me. Really limited!!! I am still searching for a pediatric home health/hospice available in this area as of now.

 My heartache started last night when my oldest, Landon, overheard me talking to Lauren and telling her that we did not want the baby to suffer and we wanted her to go in peace. We were talking about choosing heroic measures or comfort care (which is what we will have to tell the dr on our next visit). Landon came in after my call ended and said "Moma, I agree with you, I want her to go peacefully too and not hurt". OMGosh, a 8 year old saying this to me? What was he feeling? I knew at this time, I needed to sit him down and tell him everything, as I did. He was saddend by all the news and even though I thought I was protecting him by not telling him, he suprizingly seemed relieved to know the whole truth. As he walked out of the room, I cried again.

Today, I walked into the daycare to drop Trace off and as I was walking out, a newborn baby girl was being picked up from her carrier to be handed off to the daycare worker. I instantly started crying before I ever could put my hand on the door. All I could think about was how unfair this is! I know that I should not question the Lord, and I do know that He has a greater plan than even I can see, but pure jealousy kicked in. All I could think about was how I would never get to see my baby girl walk, talk, play sports, get married or anything like this! How could this be? I have waited so long to have a little girl, with the cute little girly name, girly outfits, pigtails, mother-daughter talks, fighting over the wrong choices in boys, etc. I sat in my truck, waiting for the tears to pass and instantly went into the "sad/mad mode". I drove to work and proceeded to listen to Jeans for Genes on the radio. I started googling preemie outfits and the first thing that came up was bereavement gowns. Is this a sign of what is yet to come? I kept looking at this page in disbelief. I found the perfect gown for the wrong occassion. How unnatural it is to be planning a funeral before the birth of my own child?  <Crying again> How could I miss a princess that I haven't even lost yet? I know there are miracles that the Lord performs everyday, but today I am not feeling that warm sensation in my heart. I hang on to all the verses in the Bible that gives me hope and I read or recite them to myself multiple times during the day, but they are not helping today. Where is my strength? Where is my comfort? Where is my hope? Today I miss it all as much as I am missing my unborn child.

I have cried so many times today that the bottom of my eyes are sore to touch and my once waterproof eyeliner couldn't even withstand. I am lost. I have not felt this way in a long time. What I used to find OVERjoyment in, is now just a dull warmth in my broken heart. I know that we are going to see the pediatric cardiologist and prenatal specialist next Thursday, but right now, I do not feel any positiveness coming out of their visit. Bryan and I have discussed going to get a second opinion and I know that I want to, but what are they going to tell me different? I want to know that I have done all that I can for my little girl before I give up and I guess today is just a weak day for me. Praying for the strength I never knew I had and the understanding to accept the things I can not change.

"Faith is the confidence that what we hope for will actually happen; it gives us the assurance about the things we can not see".  Hebrews 11:1

Tuesday, February 14, 2012

Breaking the Ice

Ok, so more and more people have started inboxing me regarding what is going on with my baby. We have started a crazy ride with a diagnosis of Trisomy 18. We opted to have the initial AFP blood test that most every OB offers their patient. This is a screening test for chromosome disorders. Since I took it for my first two pregnancies, I took it for this one. Our results came back consistent with T18 and the next step was a visit to a perinatologist, "just in case". The AFP test can often be sensitive and can result in a false positive. Off to the perinatologist, Dr Perry, to see what was going on. After a targeted ultrasound, a amniocentesis was recommended. Dr. Perry told us that what he saw was a hole in her heart, a hole in her spine, her brain was pushed forward and her feet were clubbed. He said that all were consistent with Trisomy 18 and that we would have to wait 10 days for the results to come back in. For everyone who has never heard of this (like me), it is a chromosome abnormality where the 18th chromosome has 3 chromosomes instead of just two. This is not something that is inherited or something that was caused by something that either of us did. They describe this as a "freak of nature". 50% of babies diagnosed with this do not live to birth and in the ones that do, only 10% that do, do not live to see their first birthday. There are some children that make it as far as their 30's, but suffer from severe mental retardation. There are 3 types of Trisomy 18: full, partial and mosaic. All are life ending, but of course, full is worse than the others. Full means that every dna cell is affected and presents with more complications. Partial is basically that every other cell is affected and mosiac is random cells are affected. Day 12 came and so did the call. Keep in mind that I have been googling every t18 website and support group I could find, searching for hope and strength. I read a  entire book in 3 days, titled "I Will Carry You". For anyone who has lost a baby, I strongly recommend reading this book!! Back to the call that will never be forgotten. Dr P said that our Angel has FULL trisomy 18 and that although he does not advocate this option, he would like for us to consider termination. He followed by saying that he will follow up with us regardless of our decision. TON OF BRICKS hit my heart! He didn't tell me just that our baby has a life taking disorder, but that my baby WILL die. How many people can handle those words? I did not do well, even though he basically told us this 12 days prior. All I heard 12 days prior was "possibility" that she had it and if not then surgical intervention was possible to fix all her other problems. This was no longer an option, as he followed to tell us that no surgeon would touch her since she has t18 and that any surgery they did would be in vain and cause her more complications or even death. Here is where I felt like someone was tying my hands behind my back and sucking the air out of my lungs. How can I be a mom and a nurse and not do anything to help a baby???? MY baby at that. What do I do? Once again, off to the computer to research and gain more hope and understanding. Finding many children that live to a older age that a few minutes was difficult when my dr was saying no hope. Today we went back to him, only for him to reiterate exactly what he said the day before. Although, my strong husband was able to focus and ask the questions that my brain could not even think to come up with. He asked if we traveled across the US and found a dr that would operate on her, would that change anything? The answer was still NO. It would prolong the inevitable for a little bit, days, weeks or months, but during that time she would be in a lot of pain from the surgery and risk infection, leading to death. Every question he asked, still had the answer of NO. Please do not misunderstand me, I really like this dr. He is geniune, or seems to be. He told us what he would do if it was his baby girl and I really felt that he meant it. He did not rush us and he answered all of our questions gently and honestly. The ultimate decision was left up to us, to keep fighting for her or to terminate the pregnancy?????? Bryan, being the completely suportive person that he is has left the decision up to me. He wants the least hurtful thing to me. I decided to keep fighting for her and pray that she doesn't suffer because of my decision. I am no position to preach to anyone, but I feel that what is best for me and my family is to keep on keeping on and let the Lord do his work. If he feels that he wants her and does not see fit to heal her, then that is His will and I will have to accept that. Easier said than done, but I am working on it. I know that He has a reason for everything He does and that we may never know what that reason is. Like Bryan has said to me, that when we get to heaven, we won't care what that reason was, because we will be together and all the worldly things are left behind. How hard this is to swallow when this is my little girl that I have dreamed about having for as long as I can remember. I am truly blessed to have my little boys and I love them to my very core. I just have always got wrapped up in the girl/boy combo of children. I often find myself asking how will I stay happy when I know my little girl's outcome from a medical standpoint? I am relying on faith, prayer and the power of God. This is all I can do as I gather more information and become part of more support groups. I have to admit that my family and 3 of my really good friends are steadily pulling me up the ladder, when all I want to do is slide down and just cry at the bottom. I love you guys. I will stop here and leave by saying our next appointment is with a pediatric cardiologist at the beginning of March. On this day we will find out if she only has a hole in her heart or something more. We will also see Dr. P on this day and decide where we will deliver.....Baptist or UMC. Please pray for my family and my little Angel through this troubling time. Landon will be so confused and hurt and I know Bryan will be so upset. Please pray for strength and a miracle that our baby girl will not suffer. She is and always will be my Angel, whether on earth or in heaven. She is a true blessing. Please feel free to post a uplifting verse, poem, or anything that I can read for myself and/or family.