A Clearly Answered Prayer

As I stated in the beginning, when I decided to do this blog, my main purpose was to keep everyone updated with information on Maddox's condition, as well as how we are doing. And honestly, as I sit here, I feel rather unsure of where to begin... I fear that my frustration will overwhelm my words and I won't be able to clearly communicate the continued hope we have in this situation, through the Lord. ... I guess I'll give it a try...

We have had two doctor's appointments in the last week, the first with our OB last Thursday, and the second yesterday at a perinatologist office near the Medical Center. Thursday went fine. Due to some bleeding that day and the previous couple, they worked me in for an ultrasound to ensure that there wasn't a placental tear. Thankfully they didn't find anything that would be cause for concern and said that Maddox was about 13-14 oz. That was good news as well, as he continues to be about 2 weeks behind on growth, but is not falling farther behind. I have to admit that I did leave the office that day feeling down (the day I just cried) and wondering what exactly it is that we are doing, and what specifically we are hoping for in all of this?! Unfortunately, I put a lot of stock in the appointment we were anticipating on Monday and probably discounted my own physician, who I have completely trusted and relied upon up until this point. Big mistake (as she did not recommend this specialist to us)! The only positive thing I really can even say about the appointment yesterday is that I kept praying beforehand that the Lord would show us clearly if this perinatologist was the one we should go with to manage our care from here forward~ He definitely gave us a resounding NO.

You are probably wondering what could have possibly made the appointment so terrible and really, as I think back to sitting in the office with her yesterday, it probably wasn't as bad as I'm remembering. But then again, everything that she said and insinuated didn't hit me until we left. Basically what it boiled down to was the way in which every question was approached, every answer was given, and the complete lack of empathy, concern, compassion, or hope. And please don't misunderstand... we are not expecting to bring home a perfectly healthy child... if God permits that I will be screaming from the rooftops, but we don't have unrealistic expectations for the future that Maddox faces. However, when someone repeatedly says to you, as you are asking questions about the possible plan for delivery or tests after birth, "if you make it that far"... it is completely frustrating and honestly a little infuriating. There were many other things that were disappointing about the appointment including her overall lack of thoroughness, her telling us that she wouldn't use any monitors during delivery because he probably wouldn't make it through, she wouldn't consider a C-section unless my life or well-being was in jeopardy, that if he did make it past delivery that we would definitely not be able to find anyone (pediatric neurosurgeon, pediatric heart surgeon) that would operate on him, and quite honestly she recommended that, if we make it that far, we just wrap him up and enjoy the little time we have with him before he passes. Noted. So then you can imagine how well that went over with Maddox's daddy...

Now if any of you have spent some time looking at websites, grief pages, tributes, etc. to babies that have died of Trisomy 18, you know that everything I just wrote up there that was "disappointing" to us is somewhat, well, standard. No one really gives any of these babies much of a chance at life and from what I can gather, they are written off immediately upon diagnosis. So then many of those things she said, in a uncaring manner of course, are "normal." Well, then are we expecting too much? Are we pushing the envelope? Are we looking for answers that aren't there? Are we being completely unrealistic about our expectations for the rest of this pregnancy and possible delivery??! Are we looking for a medical intervention that can't be provided? ... Plain and simple, I just don't think so. We basically feel like no one is even willing to give Maddox, what Dusty calls, a "fighting chance."

So this is where we are currently... we know that it is a one in a million, okay one in a billion, chance that Maddox will have a lot of time with us here on this earth... but all we are asking for is someone to tell us... "I will not rule out the possibility of performing a surgery (or whatever) on Maddox in the rare event that he is much better than expected upon delivery." We aren't asking for promises, nothing written in blood on a dotted line, or sealed with their medical licence that they will perform a miracle for our child... just simply an indication that if God allows a miracle and he can make it longer than anyone expected, we have someone willing to help us out! We just feel that in a Medical Center as large and as renowned as the one here in Houston, surely we can find someone to be our advocate. Obviously we don't know how far we will make it and if this fight on his behalf is even warranted... but if he makes it, even through delivery, won't it all have been worth it to have a plan in place. Surely it isn't too much to ask for someone to say "it's a possibility and I'll be there to help you through it!"

So as the frustration is very apparent, let me say that there were still some good things that came from yesterday, and many things to be thankful for. It was very clear, as we prayed, that this perinatologist is not one we will continue to see or seek counsel from in the future. We were told that Maddox's spina bifida isn't "that bad", and that he is up to one pound exactly... all good new for us! We know without a doubt that the Lord is continuing to work in this situation, even through the frustration, and that he will place us in the right hands for the rest of our care. We are thankful for the wonderful medical team that has helped us this far: Dr. McCloskey, Dr. Rowe, Beverly, and Sallie. We are thankful for the time that we have had and hopefully will still have with Maddox as he thrives in-utero. And we are also thankful for the support, phone calls, prayers, emails, comments and cards from so many people loving us and praying for us. The Lord's mighty hand has been upon us through the love and care from so many of you!... Thank you immensely!

Please continue to pray for us... specifically that the Lord will place the right medical staff around us that will encourage the possiblity of life for Maddox, and will honor and respect our wishes in the event that difficult decisions would need to be made upon his arrival.

Last note, I received this verse from a friend and it was of great encouragement to me... It reminds me that when I ask why we are going through all of this and if it is worth it, our Savior promises that it is. John 9: 1-3 "As he went along, he saw a man blind from birth. His disciples asked him, Rabbi who sinned, this man or his parents, that he was born blind? Neither this man nor his parents sinned, said Jesus, but this happened so that the work of GOD might be displayed in his life."