Friday, July 30, 2010


Lily had another renal ultrasound today. I walked out of that appointment, speechless, but tickled pink nonetheless. As the sonographer was looking at her kidney, I mentioned that they thought Lily had a pelvic kidney, in utero, but that a previous ultrasound (after she was born) had determined that there was no pelvic kidney, that Lily only had one kidney.

The sonographer said she'd give a look just to make sure. Sure enough, no kidney in the normal back area, but to my TOTAL surprise, she found that Lily has a pelvic kidney, fully functioning! I could not believe what I was seeing! Understand, Lily had an ultrasound when she was a few months old. There was no evidence of a second kidney. And now it's there! The sonographer said that she saw that Lily's known kidney was a normal size according to her age. That gave her reason to believe that another kidney was there. Otherwise, her kidney should have been bigger.

I know this sounds unbelievable. I still can't believe it. Some may chalk it up to misdiagnosis. It happens. I know what I believe. Praise God! But here's the rub: Lily's main problems included a VSD that is healing and giving the doctors a reason to believe that it will eventually heal itself and one kidney. Sure, there are other smaller issues, but do you see what I'm saying?! It is possible that these main problems will not even be there. If that's the case, and everything else remains status quo, our only other worry will be warding off sickness. Now, T-18 scares me. There is always that fear that some major organ shutdown or some other drastic thing could occur. We've got it good right now, but I'm always looking over my shoulder for that to change. Then I turn around and see this beautiful little girl, smiling and growing and being so precious, and I focus on today and what we've been given to be so, SO thankful for. It renders me speechless.

On a different note. . .please pray for Erika and her unborn little girl Hannah Joy. While an amnio recently revealed that Hannah does not have T 13, 18, or 21, there are some concerns, including a two-vessel cord and heart defects. Erika's blog is Please pray for this family as they deal with the uncertainty of what's ahead.

Tuesday, July 20, 2010

Results of the 1st Trimester Screening

The 1st Trimester Screening cannot tell me whether or not my baby has Down Syndrome or Trisomy 18 or 13. But it can give me a risk factor.

They start by giving me a number based on my age. For Down, that risk factor began at 1 in 131. After the screening, my risk factor lowered to 1 in 1008. For Trisomy 18 or 13, my risk factor began at 1 in 95 due to the fact that I've already had a baby with Trisomy 18. After the screening, my risk factor lowered to 1 in 1881.

I know there is still that chance, but I like these numbers.

Saturday, July 17, 2010

The Search for the Self Soother

For fourteen months, we've been working with Lily to get her to self sooth. It's always been one of us rocking or me nursing or her temporarily finding her fingers, but nothing has calmed her. If we tried to help her find her fingers, she'd fight and fuss more. Those had to be on her terms. A pacifier never worked.

Now, after fourteen months, she has found the ability to sooth herself. Her thumb! For the past three nights, she's gotten a little fussy after her evening feed,but calms quickly by rolling on her side and finding her thumb. With thumb in mouth, we have been able to put her in her crib, and she has fallen asleep that way. No rocking, no nursing, no crying herself to sleep. Boy, her former OT (Meghan) would be proud!

As a matter of fact, she's been sleeping with her light off, AND she's been sleeping through the night. This is amazing to me. I hope it's permanent. Since her tube placement, she's really become such an easy baby to care for. After fourteen months of three hour sleeps here and there, I really need this.

If only I could control the urge to wake up and go to the restroom in the middle of the night. . . :)

Tuesday, July 13, 2010


Thirteen weeks. That's how far along I am. Tomorrow I go for a first trimester screening. The screening will involve an ultrasound, where they will measure the the fluid accumulation at the back of the baby's neck (the nuchal translucency), and a blood test, where they will measure two proteins. Basically, they won't be able to tell us anything, but they will be able to provide a risk assessment for Down syndrome and Trisomy 18. According to the brochure, the combined testing detects approximately 85 percent of Down snydrome and 97 percent of Trisomy 18. Those are pretty good percentages and are actually better than the second trimester screening percentages.

Here's something I know. I remember going in for Lily's first ultrasound. It occurred around the same time Gabriel's was done. I remember thinking how small Lily looked on the screen compared to Gabriel. I just figured it was due to magnification. Maybe it was Trisomy 18. This time, the baby's length measured 12 weeks 5 days, the exact number Dave and I were using in our calculation. Just getting my hopes up, I guess. Unless we do an amnio or CVS, we won't know for sure until birth.

I'm trying not to be nervous and dwell on the fragility of this baby's life--of any baby's life, for that matter. But this pregnancy is certainly different from my other pregnancies. There was this invincibility before Lily. Not anymore. I now know that perfect pregnancies do not exist for everyone.

As for Lily. . .since her g tube placement, we have seen weight gain--she's now 14 pounds--, better eating of solids--she's up to about 25 bites on her best days, and a happier baby. As the previous post's picture shows, Lily is getting bigger. Oh, and that's not me. That's my friend Jennifer. We hung out with her family on the 4th, and I just couldn't help taking that picture. Lily was so content in her arms. In the past, I've always picked on Jennifer because Lily would fall asleep every time she held her--and it always seemed to be at times when we wanted Lily to stay awake so she'd sleep better at night. Lily is sleeping better, too. But it also helps that the place we live in now doesn't allow every little sound to penetrate our bedroom door. Lily will let out a cry here and there at night, but she'll go back to sleep.

Lily is also rolling on her stomach more and holding her head up really high. This is great to see because she hasn't had therapy since the end of May, and we've not pushed tummy time because of the button. Her rolling is telling us that she's ready to progress.

Lily also has a tooth! She got a bottom tooth a few months ago and chews on her hands nonstop. She's been drooling a lot, so I'm expecting another any time now. She's so cute with her bottom tooth. I just can't imagine her with a mouth full of them.

The button has given us a little concern. It's redder around the area than Dave and I like, but the surgeon seemed to think it was normal. Her pediatrician prescribed an antibiotic. We've also had a little granulation to deal with, where skin (?) grows up like a blister of sorts along the button. Silver nitrate fixed that, but it turned Lily's skin a blackish color around the button. Some of that is still there. Apparently, according to the pediatrician, it's an issue we're always going to have to deal with. It's a little frustrating because rotating the button is supposed to help with that. We do it and this granulation still occurs.

But really. What are we fussing about. Things are going so well I hate to fuss. Lily's gaining weight and happier. She's healthy. Right now, it's all good.