Yesterday was a busy day. First we met with Julie, our Case Manager at Children's Hospital and Dr Protain, a Neonatologist. Dr Protain was very nice and everything that she told us was very helpful but it was also extremely hard to hear. While being very nice and caring she was also very realistic. She explained some of the issues that the omphalocele might cause. We do not know the size of the omphalocele and that will of course determine how many issues Quinn might be facing because of it. She also explained some of the issues that might be caused by the Dandy Walker continuum and how the omphalocele might affect that as well. Because of the Dandy Walker she will need a shunt to drain the spinal fluid that will back up in her brain however because of the omphalocele they will not be able to drain it into her abdomen and the only other choice will be to drain into the heart. Dr Protain said that she has never seen one that is drained into the heart work and they often times need to be replaced over and over again. She said that she would not want to do that to her child.
We also discussed that though there are things that the medical field could do for Quinn when she is born it doesn't mean that they will help her. She took an oath to never harm a child and there does come a time when doing any further procedures will be harming her. Steve and I have said all along that we will never do anything to prolong her suffering. If it isn't something that better the quality of her life then it isn't something that we would do.
Another thing that we discussed is that regardless of if Quinn should come vaginally or c-section that I should delivery in the OR. The OR is right next to the room that the neonatologist would be able to work on Quinn in and that way they will be able to do everything that they can if they see that she is not doing well they can give her right back to Steve and I so we can have as much time with her as possible.
Another problem that we might face is because of her cleft. This might cause a problem with trying to get a breathing tube in, in order to get an airway.
Though I have always known that there would be a lot of issues against Quinn when she was born it was incredibly hard to hear it all spelled out for me. When we first heard found out about the diagnosis I had very little hope that we would get any length of time with Quinney. Over the last few weeks I have allowed myself to have more and more hope that we might be one of the lucky families who might even get years. During the course of our conversation, these hopes were all but dashed. Not only does she have so much against her with simply having the Trisomy 13, but when you add in all of the other anomalies there just seems like there is too much against her for her to have any chance of survival. Once again my heart is broken. I have questioned Why so many times and now I have even more whys. Why does my baby girl have to have this terrible condition? Why can't she be like many of the other Trisomy 13 babies who only have to face Trisomy 13. Why does she also have to face so many other obstacles like Dandy Walker and an omphalocele? I don't understand! It isn't fair! None of it is fair! Both Julie and Dr Protain agreed that it is very important for us to get another ultrasound scheduled so we can see the extent of the omphalocele and now that she is larger to see how everything else is forming. I go back to the midwife on the 29th and we will hopefully be able to get the ultrasound set up for the first part of October.
So after I am an emotional wreck from our meeting and only want to curl into a ball and cry I head back to work. I guess it was good that I had to go back and concentrate on work and couldn't just sit at home and cry but my mind was a mess. I somehow made it through the day though with out a major breakdown. After work Steve and I had our first counseling session since hearing about the diagnosis. I don't now how much help it was. We discussed how men and women grieve differently and what we can try to do so that I do not feel so abandoned at times when Steve is angry about the situation. It was okay and I guess only time will tell if it will be of any help.
Today I am feeling okay. Maybe I am slightly numb from all of the information yesterday. I am just trying not to think about it too much. There is too much pain right under the surface right now and I am not quite ready to face it yet.
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4 comments:
There are no words. My heart is so heavy for you guys - it literally aches for what you're going through. I understand the pain. I'm so sorry. Praying hard for you. Let me know if there is anything I can ever do for you.
I don't have the right words, but know that I feel so much of this, too. I don't understand why at all, but I'm praying for you & Quinn just as I pray for my little Hallie. I have been feeling much the same this week. It's been a hard week! What's up with that?! :) So much pain right under the surface and having to keep it all together is just hard to manage some times.
Thank you both so much for your comments! You are both such wonderful ladies and I hate that we had to meet under these circumstances.
Katie - I am also praying for you, Hallie, and all of your family. This path that we are on is so hard. I keep praying that we will both get to meet our girls and hold them close for as long as God allows.
Miranda - You amaze me! You are so strong and have such faith through loosing Annalise. I hope that should we loose our Quinn that I am able to carry myself with as much grace as you have.
I wish that none of us had to go through this but I thank God that I have met both of you. Know that you have both helped me through this just by my knowing that I am not alone.
Having Trisomy 13 is like throwing a handful of dice and seeing what happens. The syndrome itself won't do any harm on an ongoing basis other than what she has right now. Once Quinn is born she will have whatever problems she will have... no new syndromes will suddenly develop. Once those are taken care of she will have an easier time. My son had about 12 problems... 5 of those problems were going to require surgeries. Thankfully, he won't need those surgeries. I give credit to God. When our problems are bigger than we can handle, that is the time when we need to ask God for His help. One of my son's major problems was a tethered cord when he was born. The neonatologist said that it was pulling the bottom spinal column so tight that it was nearly fused with the one beside it. He was concerned whether Troy would be able to go to the bathroom or have other immediate issues. The scheduled an appointment right away with a neurosurgeon before he was two weeks old. All the problems were overwhelming. For the tethered cord the typical fix is to do open back surgery and to cut the spinal cord at the base so that it is free. I was ready to argue with the surgeon that we don't want to have surgery because we felt it could do more harm than not. On the day of our appointment with the neurosurgeon, the radio was on softly in the background to a religious station but we weren't listening to it at the time. I said a silent prayer though that everything would be OK. Right after I made my prayer, I heard the preacher yell "God will cut his cord! He is going to cut the cord!" I told my wife to listen... and I turned the radio up, but the preacher was now talking about something else. It sent chills literally down my spine. We went to the appointment and the neurosurgeon said, "You know what.... I'm not sure I even see a problem here. I want to do a follow up in 6 months but from what I see, everything looks like it is fine, except that the spinal cord is stretched a little, but that won't hurt him." He showed me the MRI photo and the spinal cord went 3/4 the way down Troy's spine and was not stuck on the bottom spinal cord as it was when he was born. God owes us no favors and He may have plans we don't know, but He can make a difference when you ask if it is His will. We still have issues we are dealing with, but I have seen some miraculous things happen since my son was born. I pray for you and your family.
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