Thursday, January 28, 2010

Quick update on us - and Nathaniel and Townes!

I had my 36 week appointment with my OB yesterday, where they did a non-stress-test and baby seemed to do fine with that. I had some contractions during the test, but nothing regular, which was good. Then, I had my last appointment with the cardiologist today and, while baby hasn't grown a functioning left ventricle yet (or, well, a left ventricle at all for that matter), baby is stable and growing well. Heart function looks good and the aorta has grown and is now 3.8! That was great news - the cardiologist was happy about that - it generally makes the surgery a bit easier. They also checked my fluid levels and those look good. The nurse who checked my fluid levels has been doing this forever and I asked her estimate on baby's size. She says if I go all the way to my c-section date, she thinks baby will be just under 8lbs. Probably around 7lb10 or 12oz or so. Sierra was 8lb2oz, so it'll be interesting to see if the nurse is right this time around!

As for Nathaniel and Townes, thank you much for all of your prayers on both of their accounts! Townes's cath ended up being rescheduled at the last minute, so won't be until Feb 11th now. So, he'll need your prayers then! And Nathaniel's surgery went great! It took only 2 hours and there were no complications. He's in the PCICU, but they're hopeful he'll be released to the general pediatriac floor by tomorrow night or Saturday morning, which would be absolutely wonderful! Please continue to pray for no complications - thankfully, he's doing well so far, but you just never know with these heart kiddos.

Thanks for your continued prayers!

Wednesday, January 27, 2010

Please pray for Nathaniel and Townes

Hi! Two other heart babies I've met through the last few months are both going in for procedures tomorrow (Thursday, 1/28) at Children's Hospital LA and I'm asking for prayers for them!

Nathaniel: He is almost 3 (so unbelievably cute!!!) and will be having the Fontan, the final surgery in the staged surgeries to treat HLHS. You may remember that I mentioned meeting him and his parents during our visit to CHLA. Well, the time has come for him to have his final surgery. Although the Fontan is technically less risky than the first surgery (and I think maybe the second as well), it is still major open heart surgery and complications can arise. Please please pray that he does exceptionally well and is discharged really quickly (if all goes well, these kids can be out as quickly as a week or so; otherwise, it can be a long haul)! He is such a cute, sweet little guy and I know it must be so hard for his parents to know what he's about to go through. He goes in for surgery at 6am I believe.

Townesend ("Townes"): Townes is a cute, spunky 13 month old who lives near us in El Segundo. I have had the pleasure of meeting with his mom a couple of times now, and Sierra got to come with me to meet him and his cute almost 3-year old sister last week (so fun!). He is going in for a heart catheterization at CHLA tomorrow, I believe midday (I want to say 1pm maybe). Please pray that the procedure goes well, they don't find any surprises, and that he's home sleeping happily in his own bed tomorrow night!!!

Thanks everyone for your prayers for these other sweet heart kids.


Sunday, January 24, 2010

Waiting on a miracle

I get asked a lot how it feels to be pregnant with such a high-risk pregnancy and whether I'm glad I found out before baby was born. The answer is it's different...and yes and no. For baby's sake, I am so so glad we found out about the heart condition before birth. The one thing research has shown is that babies who are diagnosed prenatally tend to have better outcomes than babies who don't get diagnosed until after birth. That's not to say that parents don't lose babies diagnosed prenatally (there are a lot of other risk factors as well); just that the outcomes generally tend to be a bit better. I think it has to do with the way that HLHS progresses after birth - the ductus closes (absent medication to keep it open), all of the sudden you don't have oxygenated blood flowing to the body, the body goes into shock and you end up with multi-organ failure. So, with babies diagnosed after birth, the doctors are trying to stop and reverse damage done in a really critical time, whereas when the baby is diagnosed prenatally, the doctors can stabilize the baby and focus on the palliative surgery alone. So yes, for baby's sake, I'm so glad we found out.

But for our sake, the question isn't quite so easy. Being pregnant with a baby that you know you may not bring home from the hospital is a really weird place to be. You bond with the baby, you rejoice over the kicks and the bumps you feel in your womb, but it's always bittersweet. You don't buy baby clothes or pack a going-home outfit for the baby, because it will just be too painful if you have to put away the clothes unworn. You don't set up the bassinet or the crib, because you don't want to stare at it empty. You want to have hopes and dreams for your child, just like any other expecting parent, but you don't know if you're allowed to have those hopes and dreams. How much harder will it be then if you lose the child? Now, I don't know that I've ever been allowed the blissful feeling of being pregnant and having all of those hopes and dreams. Since we had 2 miscarriages before Sierra and lost the baby last year early in the second trimester, I've always had the sense that pregnancy and life are fragile. But, for obvious reasons, it's even more acute during this pregnancy. There's nothing you can do, medically speaking at least, to help baby, so you just go along with the pregnancy and hope for the best. And, if like us, you believe in God and Jesus Christ, you PRAY.

So, where does that leave us? Waiting on a miracle. We've been trying to prepare ourselves for what lies ahead - the surgeries, complications, stays in the NICU and PCICU, the feeding tubes, you name it. And we feel really at peace with it (thanks to all of your prayers, I know!). But in the midst of all of this, we've lost sight of the fact that God could STILL work a miracle - he could still completely heal this baby's heart in the next 3 weeks. After the numerous echos/ultrasounds/specialists we've seen, the only way it would happen would be through a miracle.

We know that we worship a God who answers prayer, and the Bible (and many of your lives) are replete with examples of God performing a miracle simply because enough of his children petitioned Him. I know a lot of you pray. If you do, we are asking specifically for you to intercede on our baby's half during the next three weeks and ask God for a miracle. We ask that this baby's life would be spared from the difficulties of an HLHS diagnosis and that the medical community would be stunned by the healing that takes place in baby's heart over the next 3 weeks.

We know that a miracle may not be God's plan, and if not, we're ok with that. In that case, we'll have new specific prayer requests once baby is born. But it is our ferverent hope and prayer that God would see fit to completely heal our baby's heart before birth. Won't you please join us in waiting on a miracle?

Tuesday, January 19, 2010

We have a birthday!

I just got back from my 35 week appointment. Baby is still nice and high and doesn't appear to be coming anytime soon (a huge relief considering the cramping and contractions I've been having). And the c-section has been scheduled for Tues, Feb 16th (4 weeks from today)! Looks like baby will be born on a Tuesday, just like Mommy, Daddy AND big sister Sierra!
Sent from my Verizon Wireless BlackBerry

Thursday, January 14, 2010

Oh boy...or girl?

Just like with Sierra, we're not finding out baby's sex until his or her birthday! What can I say, we're old fashioned that way! :) But since this pregnancy (and blog) are so serious, I thought we'd throw something fun and a little lighter in here and see what you all think about what baby is. For some help, here is a picture of me at 34 weeks with this baby (in the black shirt), compared to 34 weeks with Sierra (in the orange shirt). What do YOU think? ;-)

Is Baby Bennett a Boy or Girl?
Girl free polls

Monday, January 11, 2010

Consultation with the surgeon

We had our consultation today with the surgeon at Children's Hospital who will be doing the baby's surgery - Dr. Vaughn Starnes (a giant in the field, from what I understand - we're incredibly lucky). While we were there, we also got a tour of the Cardiac ICU and got an idea of what to expect. I have to be honest, it was overwhelming - I'd seen pictures online of babies pre and post surgery, but actually being there and seeing the babies in the beds was a bit tougher to handle. But I'm glad we went - I'm really glad to have seen it now rather than immediately post-partum.

The surgeon was great - very informative. He didn't see anything in the baby's records that would put baby at a higher risk than any other HLHS baby or make baby a bad candidate for surgery. CHLA's success rate from the first surgery is 90%, which was very comforting! Then, they lose approximately another 10% or so of babies between the first and second surgeries (the second surgery will be somewhere between 4 and 6 months), so that is really the critical period. If we can make it past the recovery from the 2nd surgery, things should be less critical.

So, baby will be born via c-section on Feb 16th, 17th or 18th and will be transferred to Children's within 48 hours. Then, baby's surgery will be on Mon, Feb 22nd. (It was a relief to find out that the surgeon's schedule is clear for that day!) Then, baby should be in the Pediatric ICU for about a week or so, and then will transition to the general pediatric floor and should be there a week to 3 weeks, depending on how well baby's feeding goes. Apparently, the critical factor in releasing HLHS babies tends to be how well they feed. Baby will be fed via an ng tube (through the nose) initially and then we'll slowly add breastmilk/formula orally - the hope is that baby will be able to catch on to bottle feeding well enough to come home sooner rather than later!

One of the harder things we learned today is that, due to the H1N1 scare, no kids under the age of 18 (other than patients) are allowed at Children's. Cedars has the same policy. So, that means that Sierra will not get to meet her sibling until he or she comes home. That's really hard for me, knowing that the baby may not ever actually make it home and if so, Sierra won't get to meet her sibling. It's also hard for me to think about being away from Sierra so much - I know it is something we will deal with and handle fine, but we definitely could use some prayer for in negotiating the specifics of how we'll work it out!

A couple of true blessings from today -
1. The surgeon's assistant was fantastic - SUPER helpful in answering all of our questions.
2. While there, we met another couple from San Diego who have a 2 1/2 year old son with Hypoplastic Right Heart Syndrome along with Transposition of the Great Arteries (generally, HRHS is not as dire a diagnosis as HLHS, but the TGA complicates things and he has had to have the same surgeries our baby will have). He had the Norwood and the Glenn and is scheduled for the Fontan (the final surgery) on January 28th. It was such a blessing to see a super cute, active, otherwise healthy and thriving child with one of these conditions! And the couple was SO nice and gave us such great advice. I know it was totally God's hand putting them in the waiting room on the same day as us! If you could keep their son Nathaniel, in your prayers, as he undergoes his surgery later this month, I'm sure they'd appreciate it!

Thanks for the continued prayers - I know they're helping SO much!!!

Friday, January 8, 2010

"How are you coping so well?"

Since HLHS is such a rare defect and Cedars is a teaching hospital, I have had at least one person observing/learning at almost all of my appointments. At my cardiology appointment this week, a Fellow came in to observe. I jokingly said "what, you want to see the HLHS baby, too, huh? Never seen one, right?" He smiled and said that no he hadn't. During the course of the echo, he asked me when we got the preliminary diagnosis and I said at about 17 or 18 weeks, with a final diagnosis about a month and a half after that. I could see the wheels turning in his head. A few moments later he says "Can I ask you a really difficult question?" I say "sure," assuming he's going to ask me why we chose not to terminate.

But no, instead he says "your baby has been diagnosed with a REALLY SEVERE defect. But you seem to be coping so well - how are you doing that?"

Ah, the million dollar question. I had 3 immediate reactions, in this order:
1. What the heck business is it of yours and why are you judging my decision? (This was actually Dusk's first reaction when I came home and relayed the story to him.)
2. Ok, so I've been working really hard at trying to stay positive and you have to ruin all of that effort by asking a question like that. Gee thanks.
3. WOW, maybe God's not going to give us a miracle after all - but instead, HE wants us to use this as a witnessing opportunity. How often do you get an opening like that???

I have to admit that the 3rd reaction should have been my 1st, but what can I say, I'm only human. But the reality is that the ONLY reason I'm able to stay so positive and so at peace is because of my faith in God and Jesus Christ. I think I did say something like that eventually, but I honestly stumbled through my answer because I was so taken offguard. But the truth is that HE is what is getting us through and enabling us to face this really scary situation. I know that HE will either heal this baby (I know God still performs miracles all around us, even if we as humans want to explain them away - we're hoping He will do one here) or give us the grace to face whatever lies ahead. I know that because He promises it to us. And our faith rests in that.

We have a birth plan!

I had my monthly perinatologist and cardiologist appointments yesterday and baby is measuring right on target! (I am 33 1/2 weeks and baby was measuring 33 or 34 weeks on all measurements, which really is fantastic news, considering the enormity of baby's heart defect!) Although I had hoped not to have a c-section, the cardiologist told me that the latest research has shown that for HLHS babies with a smaller aorta (which ours has), labor reduces blood flow to the brain, so they don't recommend it under any circumstances. So, it looks like a c-section for us. If it's what's best for baby, then I have no problem with it.

So, it looks like my c-section will be scheduled at Cedars for Feb 16, 17 or 18, depending on my OB's schedule. (I should know the specific date within the next week or so.) That will put me a little over 39 weeks, so baby can cook as long as possible. The great news is that my wonderful cardiologist who has been following me the whole pregnancy, Dr. Nancy Kim, will be in the room for the delivery, which is such a comfort to me.

Baby will be born on that Tuesday, Wednesday or Thursday and then have an echo, brain scan and kidney scan at Cedars and then should be transferred to Children's Hospital LA that night or the next day, depending on bed availability. Then, hopefully, baby's first surgery will be scheduled for the following Monday (Feb 22nd).

Our cardiologist tells us that the outcomes, length of stay post-surgery, etc. tend to be largely dependent on the size of baby's aorta. Apparently, they stratisfy the success rates around the aortic size - the cut-off is 2mm. Our baby's is 2.5mm. So, technically, we're over that cut-off, but not by much. The cardiologist would've prefered that it be closer to 4 or 5mm, particularly since our baby's condition may be complicated by the fact that there is some hardening of the right ventricle and a lower than average heart rate (they don't know if either of those conditions will be problematic yet, but they certainly could be). But it is what it is and we're still hopeful we'll be one of the success stories.

We have a consultation with our surgeon at Children's Hospital this coming Monday and should find out more then. In the meantime, PLEASE keep the prayers coming - I know it's the one thing keeping both of us (but especially Amy) sane through this whole process!