From Wednesday:
Hi friends,
I wanted to send you all an update to let you know about our sweet little baby. Several of you probably know that we went to the doctor yesterday to have our "big" ultrasound. What at first looked like a cyst to the first sonographer turned into the baby's bladder when we went to see a specialist.
Our baby's bladder is largely swollen and full of urine. There is a blockage somewhere that is making it unable for the baby to urinate. This is not good, but also causes an even bigger problem - the baby has almost 0 amniotic fluid surrounding it. The problem with low amniotic fluid is: no chance for the kidneys to work, no chance for the lungs to develop, and a danger to the extremities.
These issues can be indicative of Trisomy 13, Trisomy 18 or Downs Syndrome. It can also show us that the baby's kidneys do not function. If any of these reasons are the cause for the blockage then there is nothing that we can do. We will simply have to wait for the baby to pass on their own.
However, our baby could be totally healthy besides this blocked bladder. This is what we are praying towards. I (along with Matt & Parker) are in Houston right now and have an appointment at 1:00 today with a fetal intervention specialist. I will have a procedure done today and on Friday to test the chromosomes and the kidney function of our baby.
If the tests come back normal and show that the baby and I are good candidates for surgery, then very quickly they will be performing a fetal intervention surgery to put a shunt in the baby's bladder. I must mention, though, that even if we make it to surgery, there is still a chance that the intervention is not enough or is too late.
Being completely honest, I am so scared and also so very sad. Of course, this is not the way we would have liked all of this to happen, but we also trust in the sovereign plan of God. We are crying out to Him for a miracle, but we know that He loves and knows our precious baby even more than we do. And He will heal this baby. Maybe in not the way our flesh so desires, but our baby will be healed regardless.
I am not sending you this email for you to feel sorry for us. We are fine. We will be fine. We have the Prince of Peace. But I am sending you this email begging that you would join us in prayer. Our very specific request right now is that the tests would come back showing that the baby and I are candidates for the surgery. Please join us.
One last thing - because the bladder is taking up so much of the abdomen, they were unable to tell the gender of the baby. We are still waiting to find out if it is sweet Kenley or sweet Graham in there. Some of the tests that they run today will be able to tell us. We are excited to find out so that we can pray even more specifically.
Again, thank you for reading through all of this. And most of all, thank you for your prayers.
Erin, Matt & Parker
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From Thursday:
Dear friends,
Thank you so much for your kind words and encouragement. They mean so much to us during this time and we have been going over and over them just feeling the love and prayers.
I wanted to send an update about how things went today. We first met with a genetic counselor who went over what we knew so far. She also went into a bit more detail on the chromosomal tests we are having done.
Afterwards, we had a very rough visit with our fetal intervention doctor. He was kind, but also very frank. He listed out all the best and worst case scenarios for the situation we find ourselves in. Unfortunately, there were not a whole lot of good possibilities. At best, we can expect this baby to survive to birth and then deal with renal failure/dialysis/transplant, incontinence, and bladder reconstruction. The baby could also have respiratory issues because of incomplete lung development along with clubbed arms & legs because of lack of amniotic fluid. This is best case.
The very worst case scenario is that the baby will not make it to a live birth. This can happen at any step in this process, as everything we do from here on out only offers about 50% chance of success. Matt and I made the easy choice to continue to take each step until we have done everything there is to do.
After the meeting, we went into a procedure room and had a CVS (placenta draw) and a bladder tap (on the baby) done. Both were painful for Erin, but completed within 30 minutes. It will take 24-48 hours to get the results of the tests back.
We go to meet with a pediatric urologist tomorrow at 4:00 to talk about what life will be like for our baby if it survives. Also, we go back on Friday to have another bladder tap.
Here are some specific prayer requests:
-Please pray that this baby is Graham. If it is Kenley (a girl), then we will not continue with surgery. It is a bigger issue with girls that typically cannot be corrected.
-Please pray that there is urine in the baby's bladder when we go back on Friday. This will show that the baby's kidneys are functioning.
-Please pray that the test results show no chromosomal abnormalities. Any sign of these keep us ineligible for surgery.
-Please pray that the urine testing comes back normal. (Too many big words to remember exactly what this test shows, but God knows)
Right now, we are focusing on the next step, which is the doctor on Thursday and the bladder tap on Friday. We are trying not to think of future possibilities one way or the other. We feel good. We feel your prayers. We had an awesome prayer time even during the procedure today. It was great to continue to tell God, "You know." Two simple words, but they have been all I feel like I can mutter right now.
Again, thank you so much for your prayers. We are eternally grateful.
Matt, Erin, Parker, and baby
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From today:
Friends,
Just wanted to give a very quick update about our doctor's appointment today. I will give more details later this evening, but we are so very happy to say that it is a boy and he has no chromosomal abnormalities! That is a HUGE praise! We have more steps to take on this road, but we are celebrating that we were able to get over this first hurdle.
Thanks so much for your prayers!
To God be the Glory!!
Matt, Erin, Parker & Graham
So, roller coaster right? We are trying to stay focused on the fact that God has lead us through each next step. He only has given us enough for this moment. I have found so much peace in the fact that God is ultimately the one in control. We may think we have plans or intentions, but God is the authority on all those things.
I was reading in the Gospel of John earlier while were were waiting for our appointment today. In the sixth chapter after Jesus feeds the five thousand, he has this exchange:
27 Do not labor for the food that perishes, but for the food that endures to eternal life, which the Son of Man will give to you. For on him God the Father has set his seal."
28 Then they said to him, "What must we do, to be doing the works of God?"
29 Jesus answered them, "This is the work of God, that you believe in him whom he has sent."
(Joh 6:27-29 ESV)
Jesus lays out the most important thing, to believe in Him and the one He has sent. What ever good or bad that happens, any miracles you might experience, the truth is God is the one who deserves our true faith. Later after Jesus says that he is the Bread of Life, some of his followers start to grumble:
66 After this many of his disciples turned back and no longer walked with him.
67 So Jesus said to the Twelve, "Do you want to go away as well?"
68 Simon Peter answered him, "Lord, to whom shall we go? You have the words of eternal life,
69 and we have believed, and have come to know, that you are the Holy One of God."
(Joh 6:66-69 ESV)
Pay attention to Peter's response - "Where are we gonna go? You have what we need." Peter's faith and the faith of the Twelve had changed from simple faith to real trust. Peter is putting all his eggs in the Lord's basket. He knows nothing except for the truth that Jesus is all that he needs.
I am not trying to say that I have a faith like Peter, but I think I understand where he is coming from. I look at the situation my family finds itself in. My wife and my son Graham are in a delicate state, I have nowhere to go but to Jesus. He has all that I need. One step at a time, and I know he will lead me to where he wants me to be.
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