Juli update

Juliana is officially growing like a weed. She is now just about the same size that Gavin was when he was born (& she is three weeks earlier in gestational age). She is super busy in there, but was very bored with the ultrasound tech - we saw her yawn at least three times. : )

Her echocardiogram is stable, but Dr. Rychek mentioned (for what I believe is the first time) that her A/V valve has a small leak (since she has no left ventricle to speak of, this is the one valve between the atria and the right ventricle).  He said that this is normal for kids with HLHS & that he didn’t think it would cause a problem prior to birth / her first surgery, but that if it becomes increasingly leaky, she may need an additional procedure to repair the valve in the future (or they may need to modify the second or third procedure).

My blood pressure has been rock stable this time - so we are praying that continues with no recurrence of pre-eclampsia.  The plan is for me to follow up with my doctors here in the Lehigh Valley next week and then again at the beginning of the week of October 25th. If we are progressing towards labor or my blood pressure starts to rise, we will need to move to Philly at that point. If not, my next appointment at CHOP is November 3rd, so we will probably relocate a day or two before that (& I may try to squeeze in a extra few days of work to preserve as much time for after baby arrives as possible. So, we are flying by the seat of our pants a little bit here.

If we don’t have a baby by 11/17, we will be induced that evening and Juliana will likely arrive on 11/18. We will be able to hold her for a few minutes before she is passed through a literal window to a team of doctors and nurses who will put catheters into her umbilical vein and artery to monitor her and give the Prostaglandins that she needs to keep her circulation going. We should then be able to see her for a few minutes again before she is taken to the Cardiac ICU.

If Juliana gets sick, it will compromise her ability to have her surgery and effectively heal afterwards, so we are going to limit visitors to healthy, immediate family members, and no kids while she is in the hospital. After flu season begins (I believe December 1st), she will only be able to have four designated adult visitors.

I’m not sure if it’s stress or changes in my body, but I have been having really terrible, debilitating headaches and nausea for the past couple of days. Please pray that this subsides so that I can get through the next couple of days at work.

Last night as I was typing this up, Gavin awakened crying (inconsolable for half an hour or so). He has a cold and has been coughing and dry heaving a lot. Please pray that he gets through this cold quickly and that he and Anthony have a much better night.

The fundraiser that my HLA friends organized for Juliana is this coming Sunday. If you are free, come out and have some good clean fun with us. Details at the bottom of this post.

So, we are thankful for:

1.  Juliana is gaining weight well & her condition remains stable
2.  Anthony’s awesome new job, which will hopefully decrease the stress of me being out of work long enough for our family to adjust.
3.  The prayers, love, and support you’ve all showered us with

Prayer requests:
1. No deterioration of Juli’s heart valve
2. No recurrence of pre-eclampsia
3. Continued weight gain & good development for Juliana
4. Strength and peace of mind for Anthony & I.
5. Safe, full term delivery & no other defects / complications

Thank you. We love you. We feel your prayers.
Dance details here

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