Tuesday we went back to Odessa expecting a quick visit (or as quick as they get around there). Luckily we got to see our original specialist this time. He might come into the room in bright yellow "scrubs" head to toe with chest hair beaming at the top, but that man is the greatest doctor ever. I love him. And for Christmas I may get him a Tommy Bahama gift card.
He went into more detail with what was seen on the MRI. A combination of my native Arkansas tongue and not knowing any medical jargon soon played out. He began to describe that on the MRI an ureterocele was confirmed. In the past I thought they were saying ureter cell and then I thought ureteral seal. Those things are made up; they do not exist. But an ureterocele is very real and may have been the nasty little culprit all along.
Let me see if I can get this straight...
An ureterocele is a birth defect that happens when the intricately designed ureter (connects kidney to bladder) and the intricately designed bladder do not fuse together perfectly. The ureterocele fills with fluid. In diagrams it almost looks like a blister. The biggest cause for concern with these little guys is kidney damage.
What they believe happened was this ureterocele formed and when it filled with fluid got stuck in the urethra (Connects the bladder to outside world). That cause the bladder obstruction that we first thought was LUTO. As AnnLouise grew the ureterocele was pulled by the ureter (as it is still connected to it) and ultimately popped the ureterocele out of the urethra. This allowed her bladder to drain and have normal amniotic fluid levels but had left lots of questions of how that happened.
Now. We have this situation where she has an ureterocele that is no longer in the urethra but could still be dangerous for the kidney. When she is born they will run tests to confirm all of this. Her surgery to remove this ureterocele may be basic in the big scheme of things. They will most likely use a laser scope to go through the urethra and remove the ureterocele. From what I gather this is about a 30 minute procedure.
We will have to talk to Houston and of course be patient as they continue to monitor her during and after pregnancy. They may decide to wait on the surgery as it seems she has at least 1 good kidney, a functioning bladder, good heart & lungs. But they may decide to do it immediately. Either way we will be in Houston. Doc told us Tuesday if this is all that is going on then we could be looking at a week in Houston after delivery!
I shouldn't get my hopes up like this, but I can just barely contain myself. The thought of all we've been through and now we may be looking at a 30 minute surgery and 1 week in the hospital. Sign me up.
My friend DeeAnn gave me a sign several years ago that says "Faith is not belieiving God can but knowing God will." Through this process faith has taken a deeper meaning for me. Yes, I had faith in God. I had faith He had us lifted high. But now I'm intimately learning faith...that through the blood of Christ we can approach the throne of God with prayer and worship and know without fear that He who promised is faithful (see Hebrew 10:19-23).
You all have encouraged us every step of this journey. Today I hope I can encourage you. As the prophet Habakkuk once wrote and the writer of Hebrews recalled, "For, yet a little while, and the coming one will come and will not delay; but my righteous one shall live by faith, and if he shrinks back, my soul has no pleasure in him." (Hebrews 10:37-38)
BUT! We are not of those who shrink back and are destroyed, but of those who have faith and preserve their souls. (Hebrews 10:39)
I'm speaking on this topic on New Year's Day at the sweet church I grew up in. If you're in the area, it would be great to see you at Calvary Baptist! Until then...let us be those people who have faith and perservere.
Avery
Thursday, December 22, 2016
Tuesday, December 13, 2016
Our Journey Through Fetal Medicine: Quick Update
Yesterday we went to our weekly ultrasound. I was upset we didn't get to see the specialist we are used to yet again, but we were very happy to hear nothing has changed. This doctor is perhaps overly cautious, so the fact he was happy with what he saw and said he would see us in a week was great news!
When making our appointment for next week, we said we only wanted to see our regular specialist. It is just too late in the game for a new doctor to try to catch up. Since no one has any idea what is going on and so many doctors are getting involved, it just seems best to stick with the doctor who has seen us through all of this. Of course I'm also hoping he says not to come every week.
We go back to our specialist out here next week and then Houston right after Christmas. The hunt for housing has really worn me down. By nature I'm a pretty frugal person, but I also like to live in a good, safe area. I don't need fluff. But security, well, yes. It has been difficult to find something right in the middle of inadequate and excess. We plan to drive by a few places when in Houston next and start narrowing it down. Hopefully we will also have more of an idea of what to expect after delivery.
It is hard to believe we leave next week for Arkansas. Once we get back we will only have about a month before we head on to Houston. I am very sad about leaving our home and friends and church for so long. I never knew how much Midland was home until I was forced to leave it. Now it seems incomprehensible to uproot our lives here, even if only for a few months. During this time of our lives we've leaned on our friends and church family more than ever, and I don't know how to do day-to-day life without them. It sure has opened my eyes to all of the blessings we live in everyday.
We are trying to be as optimistic as possible with our time in Houston. The rodeo will be going on while we are there, so of course I hope to see at least one night. Houston does have so much to offer right at your fingertips, and it will be fun to experience what all is there. (If I tell myself this enough, it is bound to come true.😊 Midland is still a metropolis to me. I feel like Houston is a bit out of my league.)
I may not update after next week because there is so little to say right now, but once we know something more I'll be sure to let you all know. Thanks again for your continued prayers. I sound like a broken record, but we couldn't have made it to this point without you praying on our behalf. It means the absolute world to us.
Have a merry Christmas!
Avery
When making our appointment for next week, we said we only wanted to see our regular specialist. It is just too late in the game for a new doctor to try to catch up. Since no one has any idea what is going on and so many doctors are getting involved, it just seems best to stick with the doctor who has seen us through all of this. Of course I'm also hoping he says not to come every week.
We go back to our specialist out here next week and then Houston right after Christmas. The hunt for housing has really worn me down. By nature I'm a pretty frugal person, but I also like to live in a good, safe area. I don't need fluff. But security, well, yes. It has been difficult to find something right in the middle of inadequate and excess. We plan to drive by a few places when in Houston next and start narrowing it down. Hopefully we will also have more of an idea of what to expect after delivery.
It is hard to believe we leave next week for Arkansas. Once we get back we will only have about a month before we head on to Houston. I am very sad about leaving our home and friends and church for so long. I never knew how much Midland was home until I was forced to leave it. Now it seems incomprehensible to uproot our lives here, even if only for a few months. During this time of our lives we've leaned on our friends and church family more than ever, and I don't know how to do day-to-day life without them. It sure has opened my eyes to all of the blessings we live in everyday.
We are trying to be as optimistic as possible with our time in Houston. The rodeo will be going on while we are there, so of course I hope to see at least one night. Houston does have so much to offer right at your fingertips, and it will be fun to experience what all is there. (If I tell myself this enough, it is bound to come true.😊 Midland is still a metropolis to me. I feel like Houston is a bit out of my league.)
I may not update after next week because there is so little to say right now, but once we know something more I'll be sure to let you all know. Thanks again for your continued prayers. I sound like a broken record, but we couldn't have made it to this point without you praying on our behalf. It means the absolute world to us.
Have a merry Christmas!
Avery
Saturday, December 10, 2016
Our Journey Through Fetal Medicine: Delivery Options Updates and Henry
In our last update we had gotten great news from Houston and had some hope we would be able to deliver in Odessa. The doctor in Houston called a couple days later after the team of specialists including our fetal specialist in Odessa, pediatric urologist, genetic counselor, and fetal specialists in Houston all met to discuss what should happen from here. They felt that while the chance for immediate surgery is small, it is still a chance (unintentionally feeling a little like Dumb & Dumber with that quote). So...we will be delivering in Houston. It is not the worst news ever and feel more comfortable delivering there, but it definitely has put a new spin into any plans we could've ever made. We will move to Houston in early February and stay until AnnLouise is sent home. And they have no idea when that may be. 2 days, 2 months, 2 years...we won't know until she's born.
That same week we went back to the specialist in Odessa, but the doctor we typically see was not in the office. After speaking with him on the phone and reviewing our case, the new doctor felt AnnLouise's bladder and 1 kidney may have gotten bigger. We were quite surprised by this as 2 days earlier there was no indication of this. Nonetheless he wants us to go back once a week for ultrasounds to ensure her amniotic fluid levels remain normal. Her entire diagnosis has been hanging on these levels, so we know it is vital that these stay normal. If they begin to go down, we will have to deliver early.
Overall, we are staying positive since this was a new doctor to AnnLouise. These situations are hard to come into at 26 weeks, but we are thankful they are so diligent and ensure that any small changes are not overlooked. We will go back Monday at 28 weeks and hopefully our regular specialist will be back in the office and can give us a bit more guidance for now.
We are also scheduled to head back to Houston at the end of this month. We will fly down from Arkansas during the holidays to meet with our new OB (the 3rd OB we have seen during this pregnancy! Hopefully this is the one who will actually deliver this baby), the urologist, and the fetal specialist. I can't get over how many amazing doctors have walked us through this pregnancy. They are all some of the most wonderful doctors I've ever met.
In other news Henry tested a little high for lead at his 12 month checkup, so I had to take him for more blood work. He did great, but it is never fun to hold your baby down for a needle. I called almost every day for 3 weeks for the results but kept being told the results weren't in yet. Finally I got the results myself from the lab and his results were high.
That afternoon Cash and I went to the pediatrician's office and met with the COO. Then the doctor met with us and immensely apologized for the oversight and took responsibility. He said he had the results before Thanksgiving but somehow their system let our son slip through the cracks and the news had not made it to us. That's always a good feeling.
He was very apologetic, and for that I'm thankful. It just didn't help to add this to our plates. In good news his levels weren't so high he needs to start meds. We do, however, have to get more blood work done in a few months in Houston since we will be living there by then.
At this point we are ready for Christmas and hopefully just some good rest! We have a lot to do in the next couple of months, but we are trying to take it day by day and enjoy this time of year with Henry. We took him tonight to enjoy Christmas lights. Watching him gobble down chocolate chip cookies and awe at the lights was good for the soul. I rocked him to sleep later and couldn't help but think that despite all the hardships in the past few months, nights like tonight are what make life worthwhile. We may have trials to endure over the next few months, but tonight I just want to live in the giggles of the little guy and savor his cuddles he gave as he drifted off to sleep.
That same week we went back to the specialist in Odessa, but the doctor we typically see was not in the office. After speaking with him on the phone and reviewing our case, the new doctor felt AnnLouise's bladder and 1 kidney may have gotten bigger. We were quite surprised by this as 2 days earlier there was no indication of this. Nonetheless he wants us to go back once a week for ultrasounds to ensure her amniotic fluid levels remain normal. Her entire diagnosis has been hanging on these levels, so we know it is vital that these stay normal. If they begin to go down, we will have to deliver early.
Overall, we are staying positive since this was a new doctor to AnnLouise. These situations are hard to come into at 26 weeks, but we are thankful they are so diligent and ensure that any small changes are not overlooked. We will go back Monday at 28 weeks and hopefully our regular specialist will be back in the office and can give us a bit more guidance for now.
We are also scheduled to head back to Houston at the end of this month. We will fly down from Arkansas during the holidays to meet with our new OB (the 3rd OB we have seen during this pregnancy! Hopefully this is the one who will actually deliver this baby), the urologist, and the fetal specialist. I can't get over how many amazing doctors have walked us through this pregnancy. They are all some of the most wonderful doctors I've ever met.
In other news Henry tested a little high for lead at his 12 month checkup, so I had to take him for more blood work. He did great, but it is never fun to hold your baby down for a needle. I called almost every day for 3 weeks for the results but kept being told the results weren't in yet. Finally I got the results myself from the lab and his results were high.
That afternoon Cash and I went to the pediatrician's office and met with the COO. Then the doctor met with us and immensely apologized for the oversight and took responsibility. He said he had the results before Thanksgiving but somehow their system let our son slip through the cracks and the news had not made it to us. That's always a good feeling.
He was very apologetic, and for that I'm thankful. It just didn't help to add this to our plates. In good news his levels weren't so high he needs to start meds. We do, however, have to get more blood work done in a few months in Houston since we will be living there by then.
At this point we are ready for Christmas and hopefully just some good rest! We have a lot to do in the next couple of months, but we are trying to take it day by day and enjoy this time of year with Henry. We took him tonight to enjoy Christmas lights. Watching him gobble down chocolate chip cookies and awe at the lights was good for the soul. I rocked him to sleep later and couldn't help but think that despite all the hardships in the past few months, nights like tonight are what make life worthwhile. We may have trials to endure over the next few months, but tonight I just want to live in the giggles of the little guy and savor his cuddles he gave as he drifted off to sleep.
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