Monday, October 1, 2012

Tamsie Update

So I have been, as my dear English friend Vickie would say, rubbish lately about taking pictures of the girls, but I'm gonna go ahead and post anyway because so many people have been asking about how Tamsie's appointment went on Friday with the pediatric urologist.

Tamsie had a renal ultrasound done to get an idea of what her kidney reflux is looking like. When we met with the doctor afterward, she told us that she does not have any records of Tamsie's previous ultrasounds, but only the written reports. At the last ultrasound, the radiologist assigned the condition of her left kidney a 3 out of 4. (4 is the worst. In my last post I said there were 5 grades of kidney reflux, but I was wrong - there are 4.) This time, the radiologist assigned her condition a 4 out of 4. That means that either it's gotten worse (obviously NOT good to hear), or it has stayed the same, and it's just a different radiologist's assessment of the situation. The doctor said that it's entirely possible that that's the case, because assigning a number to these things can be kind of a subjective process. Her right kidney is at a 2, which, at this time, isn't anything too concerning, because grade 2s typically sort themselves out over time without any intervention. So we left the appointment not knowing the full scope of the situation, but with the indication that her condition has potentially worsened.

However, on the way out I wanted an additional bit of hope, so I confirmed with the doctor that the main reason that all of this is a problem is that it puts her at heightened risk for UTIs, which, as young as she is, could do some serious damage were she to have one. The only sign we know of to look for would be a fever, so any time she has a fever over 100.8, she has to go to the doctor to confirm that it's not a UTI. So far she hasn't had a UTI, so that is really something to rejoice about! (Friday actually turned out to be even more dramatic than we were bargaining for, because that evening she ran a 102-degree fever. Chris took her up to LeBonheur Urgent Care, and praise the Lord, it was NOT caused by a UTI.)

The doctor wants us to go ahead and have the next two tests done as soon as LeBonheur can get us in. She said it's not an emergency or anything, but she just doesn't want to put it off any longer than necessary. So now we're waiting to hear back from the doctor's office to know when her dye test and renal scan are scheduled. We're still in waiting mode, which is not a fun place to be. Now I'm totally understanding what my mom meant all those years when she'd say, "I'd rather it be me than you." Having a child with ANY kind of medical issue that involves prolonged testing is nothing I'd recommend to anyone. I'm not googling any of this, because I know it's not healthy, as I tend to assume the worst. I'm just trusting God that He's gotten us this far (and He has gotten us VERY far from where we started), and that He will continue to take care of us, and that He has this whole thing under control. It's not easy, but He never said it would be easy. 

In addition to trusting Him with Tamsie's situation, now I know to be trusting Him with Evie's as well. When Tamsie had her ultrasound on Friday, the ultrasound tech asked us if all is well with Evie's kidneys. "As far as we know," I said. His response was something like, "I mean, you've had scans done for her and everything just to be sure she doesn't have this too, right?" And my answer was no. We discovered that Tamsie had an enlarged kidney during an ultrasound the day before she was delivered, and Evie's looked normal at the time, so we just never pursued it further. I brought this up to the urologist, and she said that kidneys can appear normal but still have reflux. She advised us to have the dye test done on Evie too, just to rule it out. The dye test is very invasive and NOT fun for the babies to go through, but I think it would be better to go through it and know whether she has this or not so that we can be treating her if we need to be. That's also something on the horizon that we're praying for good news about.

By the way, this kidney condition was caused by neither Twin-to-Twin Transfusion nor prematurity. It's something she would have had anyway. Also, we're pretty fortunate to have caught it before she was even born, because a lot of times it's not caught until a child has had a string of UTIs and damage has already been done.

God keeps reminding me of Romans 8:32: "He who did not spare his own Son but gave him up for us all, how will he not also with him graciously give us all things?" Lately, when I make the girls their bottles, before I can walk over to feed them, they start crying, as if they're afraid I won't give them their bottles. As if I would just make them their bottles and then withhold them from the girls!! (This alone is a HUGE answer to a lot of prayer. They used to cry when they'd see the bottles because they were afraid of them, and now they cry because they're so ready to engulf them!) I realized the other day that this is what I tend to do to God when I get scared He's just going to leave us hanging at this point. Once again, I'm reminded of Matthew 7:7-11: 
"Ask, and it will be given to you; seek, and you will find; knock, and it will be opened to you. For everyone who asks receives, and the one who seeks finds, and to the one who knocks it will be opened. Or which one of you, if his son asks him for bread, will give him a stone? Or if he asks for a fish, will give him a serpent? If you then, who are evil, know how to give good gifts to your children, how much more will your Father who is in heaven give good things to those who ask him!"

So we're praying that God will give the good gifts of healthy kidneys to both of our girls. Please pray that all of their tests bring us reassurance and good news and that they outgrow all of these issues. (Our Louisville doctor always assured us that it was totally possible for Tamsie to outgrow all of these problems in time.)

In other news, it's October now, which means the girls' FIRST BIRTHDAY is now 11 days away - praise God for getting us here! I keep thinking constantly of how much better our situation is this year than it was last year!

On to my measly offering of pics for the day:

Here's Evie wearing a Baptist Memorial Hospital T-shirt I was given at the hospital when I was born.

Dad dug up this picture of me wearing the same t-shirt back in '83 - except that I was 1 month old at the time and Evie was 11 months in the picture above! ;)
Y'all, thanks for praying for all of us. God has worked amazing wonders through the prayers of many who continue to lift us up. We can't say thank you enough, and we really can't thank God enough for bringing us to where we are now.

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