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."

Comments

Jennifer said…
I am so encouraged to see your continued hope even when others seem hopeless. I pray that they would see your faith...a faith in the One whom we know has a heart that is committed to your good and His glory...a faith in the One who is able do immeasurable more than we could possibly ask or imagine.
Laurie said…
Hi Kenzie,
I will be praying for your family and Maddox from this day forward. So many girls have walked and are now walking this road you are on. Praying that you are surrounded by a medical team
that encourage you and are compassionate. God's complete guidance and wisdom leading you in each and every decision you will be making, and peace and joy in looking forward to meeting this baby. Your faith is in the One who has created your little boy and He will be with you every step of the way. He is faithful and never breaks His promises.

Laurie in Ca.
Lisa said…
We love you all and are praying for you, dusty, deacon and maddox. You have been on my mind a lot recently and I know that's not by accident. In reading through your blog, I have this overwhelming feeling that you are touching more lives in more ways than you will ever know this side of heaven. We are praying for your faith, for wisdom, for every decision, every need to be met overwhelmingly. Right now I am praying for God to raise up a medical team that can offer Maddox every opportunity. In the verse you shared it said ...that God MAY be displayed... Let me just say, God IS being displayed in and through your lives. My life verse has become Jeremiah 29:11-13 -- perhaps a familiar verse but one that I have been able to cling to... We ARE praying!
Love, The Houghton's
Emily said…
Kenzie,

I am so honored to have found your blog tonight. I will be praying that God sends the perfect advocate for Maddox. I know all too well the value of having medical professionals on your side, believing in your baby for whatever time you are given together. Your time with Maddox may be brief, but it will undoubtedly be blessed. We held our own tiny piece of Heaven for five days this past June, before a rare brain disorder made a way for the angels to carry her home. No amount of heartache will ever outweigh the gratitude we feel for having been given such a gift. Please know we are lifting you up and asking God to keep all four of you in the palm of His mighty hand. His grace is sufficient for you.
So Blessed said…
Praise the Lord; praise God our Savior! For each day He carries us in His arms. Psalm 68:19 (NLT)

He will carry you...it is one of His many precious promises to us.

You and your family are in my prayers.
Emily said…
Kenzie,

The comment you left me blessed me more than you know. I would be so honored if you would link me here and I'll link you & little Maddox on mine! :)
Mandy said…
I read your comment on Emily's blog. I lost my little baby girl after only 12 hours in June to T18. I am so sorry you are going through this. Please know that I will be praying for you and your family and would love to talk with you should you want to. You can email me at bmmhopkins@windstream.net and visit my blog at madelinegracehopkins.blogspot.com

I will be thinking of you.

Mandy
GA
www.madelinegracehopkins.blogspot.com
Anonymous said…
I do not know you, I found your blog through another blog. But, I cannot imagine what you are going through. I had a daughter that was born with a form of spina bifida. We did not know until birth. I cannot imagine with the other diagnosis what you feel. But, I can tell you this. My daughter had surgery to fix it and even given all the chances of such things as not being able to walk, she is a normal 5 year old who plays soccer and takes dance. We have had very few problems. I do believe God can work miracles because I have seen it with my daughter! You will be in our prayers
Kim said…
Kenzie, Thank you for posting to my blog. I have added you to mine because we do need all the prayers we can get. I have to say, I am so saddened by the sweet Mommies who have to go through this. I wish that I was the only one. I know beyond a shadow of a doubt that this is not God's plan for us or Mary or Maddox but even more than that, I know that our sweet babies will be glorifying God. How, when or why - I can't answer, but I know. I trust but I question. I pray that God will continue to poor his grace down on us to help us get through this. I know with him and each other's support we can. I understand your frustration with the Dr. I will share my story on my blog about that! You are my sweet sister in Christ and I will be crying out for you and Maddox and Deacon and Dusty.
Kim (Mary Grace's Mommy)
Kim said…
Kenzie, It's Kim again. By the way - I live in Keller which is about 5 hours from Houston. Maybe someday we can coordinate a get together.
Kim
Kim said…
Kenzie, It's Kim again. By the way - I live in Keller which is about 5 hours from Houston. Maybe someday we can coordinate a get together.
Kim
Laurie said…
Hi Kenzie,

Just stopping by to say Hi and I hope your weekend is a good one for you and your family. I am praying for you and for sweet little Maddox as his birthday approaches. I know you are enjoying him now but when you meet him, wow, it will be amazing to see him. Peace and love to you and yours this night. Prayers continue for you.

Laurie in Ca.
Cathy said…
Dusty & Kenzie,
I am so sorry for what the dr. told you. yes, these precious Angels have a lower rate of survival, but they can survive. It is your voice that can help them. I was timid in the beginning but not anymore. Annabel is almost 32 mts. old.I can help you with dr. before birth because Annabel came to me at birth. But there is a wonderful pediatrician in Houston, Dr. Don Schaffer who is very pro trisomy. He may could give you a name of the peri dr. you need. He help me get Annabel a surgery from her urologist at TX Children. Her urologist would not perform the surgery because of T18 and after a 15 min. conversation, Annabel had her much needed surgery scheduled. Also, her genetisist Dr. Craigen at TxChildren was very negetive at first visit (13days) and told us she had no chance of survival, take her home and love her and comfort her. He is singing a much different tune and is very pro Annabel. There is a wonderful dr. John Carey in Utah. He is the man where T18 is concerned. Maybe he could help refer you to someone there locally. I am only a little more than an hour a way from you and if you would like to talk with me in person or see Annabel, please email me. These children have much to share. Always remember there is someone to help you along with our Lord God. Also there is another mom I will have write you whose baby may have T13(didn't let them do final testing) with spina bifida. Houston didn't want them to close and this precious miracle is now almost 9 mths. old. Everyday the Lord give with these Angel is a blessing. I love the verse at the end of the blog. Please if you need any information just email.
Cathy & Annabel
Cathy said…
Dusty & Kenzie,
Its Cathy again. my email is suzyque92@hotmail.com Also sorry for the typos in the previous email, I was doing this in such a rush and didn't proof read. I meant to say I cannot help with drs. prior to birth as Annabel came to us right after birth. Also the Dr. John Carey I mentioned is in Utah and I do realize you are in Houston.
Thanks,
CAthy & Annabel

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