Our little junkie

What a roller coaster the last 2 days have been! We came in yesterday to hear that Bodie would be moving up to the 6th floor (the step-down unit)! While we were excited since it's one step closer to going home, we were really apprehensive since we just didn't feel like he was ready yet (he'd been de-satting a bit), but we figured the doctors knew best. Well, all day long, he continued to desat worse and worse. He'd go all the way down to the 50's when he was mad - and it would take him FOREVER to come back up. We were totally confused since, although he had been a low-satting kid initially, he had just had 2 days of really good sats (high 70's to low 80's). By the end of the day, they decided that he just wasn't ready and they were keeping him in the CTICU until they could figure out his low sat issue. They decided to stop his feeds and put him back on vapotherm, telling us they thought he had fluid again in his lungs and they wanted to get him to pee it out and just give his little body a rest. Even though it technically was a step back, we kind of looked at it as a step toward figuring out what was going wrong. But nonetheless, it was a bit disappointing.

When they did rounds this morning, I mentioned that he had been pretty agitated the last 2 days (corresponding to his dip in sats) and hadn't been able to sleep for more than 10 minutes at a time - the team put that together with the other things the nurse had witnessed (hyper-alertness, sweating, runny eyes, sneezing, etc.) and deduced that he was going through morphine withdrawal! He had been on morphine as needed (where he was getting it pretty frequently) and somewhere in the last 2 days had been taken completely off of it without being weaned! So it turns out the biggest culprit in his lower sats the last 2 days had likely been the fact that the poor guy was jonesing so bad for morphine!

So, they put him back on morphine today and the plan is to give it to him as needed for 24 hours, calculate what his "needs" are and dose it round the clock, weaning by about 10% or so a day until he is off of it. They don't think he needs it for the pain anymore, he's just addicted. I have to say I agree - earlier today, he was really mad and crying, satting in the 60's - literally within seconds of the nurse administering the morphine, his whole body relaxed and his sats shot up to 80! I would say that's the definition of an addict. Poor kid. But apparently it's not uncommon for hypoplasts who've been on painkillers for extended periods like Bodie to have this problem. So glad they have a plan for it. And, I have to say, he was like a whole different kid today - totally relaxed and satting much higher today!

So what does he need prayer for today? A number of things actually:
1. Pray that the morphine withdrawal is truly the case for his low-sats and that, as he gets weaned off the morphine, his sats will continue to stay high.
2. Pray for his feeding. They let us try him on a bottle yesterday and the good news is that he very quickly took 6 of the 10 cc's, which means he knows what to do with a bottle! Praise God for that! The not so good news is that he quickly spit up a couple of times, which can be a sign of intolerance. So they stopped the bottle feeds for the time being. Please pray that they let us try the bottle again soon and that he does better this time around.
3. Bodie still doesn't have much of a cry. We're hoping he's just hoarse from the intubation, but the doctors have expressed some concern that it may be vochal chord paralysis as a result of the intubation. To be honest, I'm not even sure what the long-term implications of that are (it seems that even the kids with vochal chord paralysis typically eventually get their voices back) - they're planning to have an Occupational Therapist take a look at Bodie once he's on the step-down unit to see if there's anything going on there. Please pray that his voice comes back soon so that we don't have to worry about this!
4. Please keep Bodie's roommates in your prayers as well - Pressly (who is 7 weeks old and has been at CHLA for a month already) and Isaac (this little guy has been roomies with Bodie for a while and they seem to be competing over who can get more attention from the nurses - pray that his feeding issues get resolved so he can get over that hurdle!)

Ok, that's it - so sorry for the long update, but just so much to report! Thank you as always for your prayers!

Another good day!

Bodie had another good day today - he's progressing with his feeds (still hoping to get to the bottle later this week!) and got to be held by Gigi! (Also had visits from Phyllis and Auntie Gina - thank you both for going out of your way to come and visit our little man!) Here are a few pics...

With Gigi:

Very suspicious:

Out cold next to his buddy the monkey:

Another great day for Bodie!

Bodie had another great day today! (I actually don't have much to report, but I know people get worried if I don't post an update, so wanted to make sure to post something!) He got "de-accessorized" as one doctor put it - they took out most of his lines, so all he has left is his pic line (he has to have one iv line in order to distribute meds and what not)! And he's down to 0.5L on his oxygen and will hopefully be completely off of it soon! The nurse today actually took him off of it a couple of times today, but his sats dropped, so she put him back on. He really has done amazingly well coming off the vent - with all the problems we had last week, we are still shocked at how well his extubation went and that they are even talking about taking him off oxygen already! Praise God!!! He's also been moved from a warmer to a "big boy bed" (basically, a crib - but it just looks less medical than his warmer, so I'm excited). It's a bit bigger, so we can bring in more blankets, etc. to dress it up. And, he's up to full feeds of breast milk already!!! He's now taking 15cc's an hour (about 1/2oz.) through his ng tube and hasn't had any adverse reactions. The next step will be to consolidate the feeds and give him 45cc's every 3 hours. If he can tolerate the larger, less-frequent feedings ok, then we can start working on bottle-feeding!

He's still having frequent episodes of SVT. The general consensus now is that they're not anything to freak out about since he seems to tolerate them well, but they do want to get them under control before we leave the hospital as they're not a good thing long-term for a single-ventricle kid. It's a relief to know we won't have to worry about the episodes forever.

Today, please thank God for bringing Bodie this far already and pray for his feeds to continue to go well and for the doctors to figure out his SVTs and how best to treat them.

And finally, here's another pic of our little man in his new favorite sleeping position - the froggie...

Food, food and more food

Bodie is having a GREAT day! He tolerated the Vapotherm so well, they weaned him down off of it, so that he is now on the nasal cannula only! YAY!!! And that means they can start his feeds up again via the NG tube (double yay)! They'll start him back at where he was a couple of days ago (they had to stop the feeds in anticipation of extubation - then, they wait until they're stable being extubated before resuming feeds) and then slowly increase the amount of breastmilk he gets up to full feedings. They go really slow with feeding hypoplasts since a lot of them have gut issues (due to the weird blood flow in utero) and they don't want too much energy going to the gut. So, we'll have a slow road - but it's so exciting to be so close to working on feeding issues - within a few days, we'll hopefully be able to start giving him a bottle!!! Praise God!


And in related news, THANK YOU so much to all of you who have brought us meals, given us care packages, etc. - I'm working on thank-you notes to all of you (don't have quite the free time that I had thought I'd have!), but rest assured that we are incredibly grateful for your generosity! A number of you who live locally have asked about helping with a meal rotation - if you'd like to help, our wonderful friend Natalie has set up a meal rotaton. Here's the link: http://www.brownbearsw.com/freecal/Bennetts?Date=2010-03-01;Op=ShowIt - just go anywere it says "Meal Needed" and enter your info. If you need our address or anything, just shoot me an email. :-)

And thanks more than anything for the prayers and good thoughts! We know that's why our little fighter is doing so well - please, please keep them coming!

Amy

Look ma, no vent!!!

After a kind of rough night last night (where Bodie scared his nurse by going into a 2 hour SVT that she just couldn't bring him out of), imagine our surprise to walk in this morning, find them rounding on Bodie, and hear them say "we think he's ready to come off the vent today." What?!? That can only be described as an absolute answer to prayer!!! His x-rays had showed such an improvement and his sats and other vitals had been so good that they decided he was ready to be extubated! They took him off the vent at 10am and put him on vapotherm, which is basically a little thing through the nose that gives Bodie oxygen via rapid puffs of moist air to help his lungs inflate. It was a HUGE step forward for Bodie and he did GREAT! (They will slowly wean him down as he's ready from the Vapotherm to a nasal cannula and then completely off oxygen.)
Here are some pics of our sweet little guy without that yucky vent in his nose! And mama got some more cuddle time today, which made her extra happy!

Tonight, please pray that Bodie continues to be such a rock star off the vent and that his SVT's start becoming less frequent, so that we can all relax that his heart is settling down.

One prayer answered; still working on the other one

Good news first! I got to hold Bodie AGAIN today! It was SUCH a great feeling - and he was looking at me for part of it and I was able to determine that his eyes are definitely a beautiful light blue! While I was holding him, he went into a SVT, but his pressures were remaining stable, so we weren't quite as panicky as we were yesterday about it. Then, a few minutes later, the doctor at Children's who specializes in heart rythyms and the electrophysiology side of things happened to be in the unit looking at another baby in our room. (He usually rounds at least once a day through our unit, but he happened through at a different time.) Our nurse mentioned to him what Bodie had been doing and he was asking her questions about the SVT (how high Bodie got, how long it lasted, what his pressures did, etc.) when Bodie did it AGAIN! It was such great timing because he got to see EXACTLY what Bodie was doing. He watched for a bit (during which time Bodie went into another SVT - the third episode in about 10 min!) and basically said he isn't worried about it! It was such a relief to hear it straight from him!!! He said it doesn't hurt Bodie's heart to do it and we can just watch it. Apparently, people with congenital heart conditions, especially ones like Bodie has, are more susceptible to SVT's and some grow out of it. Sometimes it's just caused by an extra nerve in the heart. But since Bodie's doesn't get that high and his pressures are fine, it's not troublesome. If he keeps having it, it seems we can manage it with low-dose meds if need be. That was SUCH an answer to prayer for us!!! So thank you for all of your prayers last night about that!

On the other end of things, please keep praying for Bodie's sats and pressures to get better and his lungs to clear so that he can be extubated. His sats were great all night and into this morning and he passed all of the tests, so they were about to extubate him - until they checked his chest x-ray, which showed more fluid since the day before :-(. Then his sats, pressures, etc. were down in the afternoon and we were very clearly told that they were going to focus on getting the extra fluid off before doing anything else and that extubation was still at least a few days away. I was really disappointed, but understood - we don't want him extubated just to have to re-intubate him. But I just got off the phone with the night nurse, who told me that his sats and other vitals look good and they're hoping maybe to extubate tomorrow. But she confirmed that he hadn't lost any more fluid, so it kind of contradicts what we heard earlier today. So this is all to say that we just don't know what to expect and when he will finally get extubated. Such is the life with a heart baby, I'm discovering. As we keep saying, we're working on "Bodie Time." So, please pray tonight for Bodie's lungs to clear - and for us to have patience until they do so!

If it's not one thing, it's another

Today was definitely a good news / bad news kind of day.

The good news is that Bodie's sats definitely look like they're trending better - he has been in the high 70's to low 80's for several hours now!!! Praise God! So, we're hopeful that his low sats were indeed caused by the pleural effusion and that the fluid is finally coming off of him and that's being reflected in his better sats. With heart kids, there are lots of ups and downs, so it's possible his sats will trend back downward. Please pray that's not the case and that his x-ray tomorrow morning will show a significant reduction in the effusion! That should put us closer to extubation.

The not so good news is that just as we were starting to breathe a sigh of relief that his sats were finally showing an improvement (and my mom and I were about to leave for the day), he started having episodes of SVT, or Supraventricular Tachycardia. Basically SVT means that the heart starts beating really fast (for instance, Bodie will shoot up from 120bpm to 180 or 190). It's really freaky to see as a parent because the nurse will yell for a cardiologist and all of the sudden 3 or 4 people will be around the bed, trying to snap him out of it. We were lucky that Bodie snapped out himself during the first episode (it was less than 10 seconds), but he needed help the other times. The other good news is that they were able to stop the other episodes by putting ice on his head (so he didn't need meds or a pacer to snap out of it). But it's so sad because he starts (silently) screaming like crazy when they do it (I mean, who wouldn't? I would be livid if, without warning, someone put a ziploc bag full of ice on my head - and I have hair to cushion the cold a bit!)...anyway, he's been coming in and out of his normal rythym and SVT all evening. The bummer thing is that they're not sure why. They have a few theories, but just don't know which one it will be yet. When I last talked to the nurse, they were experimenting with his meds to see if it was a drug causing it and were about to do an EKG. So, tonight, please send up some extra prayers that they figure out what's causing his SVT's so that they can get them under control.

Thanks and I will update once we know more!

Lovin on my little man

Guess what I got to do today???

Yes, that's right! I got to hold my little man!!! My nurse today told me she'd set it up so I could hold Bodie - and she did (and I kind of understand why the other nurses were reluctant to let me do it, since it took her probably 20 minutes to get everything set up for me to hold him)! It was awesome - he slept so peacefully in my arms! (A big thank-you to those of you who encouraged me to keep asking to hold him in spite of the vent!!!)

This was my view of my sweet little guy:

And the best part??? Check out these sats (the number in green)- yes, this is the number that we've been trying to get over 72 or so for days now. His sats were in the mid-80's the entire time I was holding him!!!

In other good news, since Bodie did well with the Pedialite yesterday, they started him on breastmilk today! YAY!!! Finally our little guy is getting the good stuff - it's still in small increments, but at least it's something! (and it's pretty nice to know that the exhausting round the clock pumping is actually being put to good use!) AND, they're pretty sure they know why his sats have been so low - turns out he has pleural effusion, or fluid surrounding his lungs. Essentially, the fluid is compressing his lungs, not allowing him to take the deep breaths he needs to. They're pretty sure that's why they've been having such difficulty weaning him off the vent. They're really happy to have an explanation, since he had essentially stumped them up to this point (btw, the pacer did work, but didn't end up making a substantial difference). So they put him on a higher dieuretic to try to get him to pee out the excess fluid. We're hopeful that will work - if he's not able to do that, I think they may have to put chest tubes back in to drain the fluid out - and it can often become a chronic problem if so.

So tonight, please pray for little Bodie's body to get rid of the excess fluid naturally - that should be the last thing standing between us and weaning off the vent!

Slow but steady progress

Bodie had another good day today - his catheters came out (a big relief to me since I know they can't possibly have been comfortable for him - even if it means I have to change diapers now!) and the nurse moved the ng tube from his mouth to his nose - he seem so much happier now!

His oxygen sats are still low (68-72ish and they need him to be 75-85, which would send me to the ER, but is normal for heart kiddos). It has been stumping the cardiologists - everything else seems to be doing well, but his sats just won't come up to where they'd like. And until his sats are holding steady between 75 and 85, they won't extubate him. So, they're going to try a few new things - (1) an echo to take a look at his shunt to make sure it's not restricted in any way (that's scheduled for tomorrow morning), and (2) putting him back on an external pacemaker at a slightly higher heartrate (he has been in a good sinus rythym since last night, right at 115-120, so they paced him at 130, with the thought that maybe making his heart work a bit harder will get more oxygen to his body). The good news is that since they started pacing him, his sats have held steady in the mid 70's! YAY!!! We're trying not to get our hopes up, but it sure would be great if this could be the thing that gets us off the vent! Please pray that it does...

In other good news, they've started Pedialite through his NG tube, so our boy won't be so starving anymore!!! If that goes well, then they'll finally start giving him my pumped breastmilk through the tube! And, I got more cuddle time with him today...

Good days and bad days

So sorry for not posting an update yesterday - Bodie didn't have that great a day yesterday and I was just too emotionally spent to update by the time I got home. Today, thankfully, was a much better day!

Yesterday started out well, with the doctors telling us during morning rounds that the plan was to extubate him later in the day. I was really excited! But, apparently, Bodie had other plans, the little stinker (these heart kids really do teach us patience). He didn't respond well to the vent weaning and his sats kept dropping, so they were trying different things, theorizing that perhaps he just was retaining too much fluid for his lungs to expand properly. He spent most of the day sleeping while they worked on getting the fluid off. Then, when Dusk got there in the afternoon, Bodie woke up but was extremely agitated and was awake enough for us to see him cry. But, since he is on the vent (which goes through his vocal cord), he wasn't making any noise. It was really heart-wrenching to see.

Then, right before we left, his heart started going into weird rythyms. In utero and before the surgery, Bodie always had a low heart rate - 100-115 or so (he comes by this genetically, as both Dusk and his father Alan have really really low resting heart rates). Post-surgery, he had been 155-160 (they didn't know why as they didn't expect the surgery to correct that problem) and then yesterday morning, he dropped back down to 110-120. They hadn't been able to explain it - but then yesterday afternoon, his rate jumped back up to 155-160 and again, they couldn't explain it. When we left, the doctor was in there and they were trying to figure out what was going on. A couple hours later, we finally got an answer - his 110-120 rate is his sinus rythym and that's driven by the atrium (the top of his heart) where he should be. But, apparently, the bottom of his heart is also trying to drive the rythym (getting the higher rythym) (our nurse says it's like a power struggle over who's in control). Although he seems to handle the alternate rythym ok (his pressures and other vitals stay stable), they don't want him in the other, funky rythym as it's just too hard on his heart. They're hopeful that either his heart is just irritable (very likely given that he had open heart surgery just a few days ago) or he was dehydrated due to them pulling too much of his fluids off. The good news is that they gave him more fluids and he has been in his sinus rythym pretty much since then (a few episodes of the funky rythym, but generally better)! Also good news as that hopefully means he won't need a pacemaker in addition to everything else going on!

Another kind of troubling thing is that his saturation levels are low (generally low 70's, sometimes dipping into the high 60's) (they like hypoplastic babies to have sats between 75 and 85). They have some theories on why his sats are low, but he doesn't seem to fall into any of them - so, it may just be his normal. Right now, they're watching to see what happens with them. The thing that's kind of tough is that he needs his sats to stay relatively stable to come off the vent (rather than de-satting everytime they try to wean him down a bit). So, we're hoping they level off.

So, that's all to say that yesterday and last night didn't go so great. It was so frustrating for me since all I want is for him to go off the vent so that I can hold him. You shouldn't have to go through so many hurdles just to hold your newborn child. :-( I would say I hit an emotional wall this morning and pretty much cried the whole way to the hospital...

But today was totally different! Thank God we had our wonderful nurse Amy again today. When we got to the hospital, I got two words out about how badly I wanted to hold him before I started crying again and she handed me the kleenex and told me I could take the side of the incubator down and just sit next to him and put my arms around him. It was amazing. I was pretty much eye level with him, and he was awake and alert (and not agitated, thank goodness), so I laid my head next to his and just talked to him for like an hour until he fell back asleep. It was exactly what I needed - to be able to connect with him like that. He was just looking at me, holding my finger, and seemed so content. The other good news is that they took out his chest tubes (I was glad about that because I know he can't have been comfortable with those in)!

So, today was definitely better. He has been weaned down on most of his meds ok, but we're still waiting on weaning him off the vent. That is our next big step, and we don't know when the eta is on that - it all depends on what his little body can handle. So please pray that his body can handle it and he can go off the vent SOON!!! Thank you so much for your continued support and prayers!

Beautiful day

Praise God! Bodie had SUCH a great day today! They were able to completely wean him off the nitric and the epi, along with a calcium and a potassium line he was on. They also started weaning him down off the vent and the dopamine (helps with his heart squeezing) and so far, he's tolerating it really well (his sats are still in the mid-80's!)! It's so wonderful to see his progress. We got to spend some great time with him this afternoon and he was awake for a while, which really has been a first for us! For the last hour or so that we were there, he was just gazing at me, holding my finger, and rooting (for those of you without kids, that means he was, ahem, looking for something to eat and unquestionably understood that something comes from mama! :-)) It was amazing. The nurse said that even though he was "stoned" (her word, not mine - he's still on some serious pain meds), the interaction she saw between the two of us was an incredible example of how strong the bond is between a mother and her baby and how a baby unquestionably knows when mama is around. :-) It was really cool to hear.

The next big hurdle is getting him off the vent, so please be praying specifically for that! We don't get to hold him or start thinking about feeding him until he is extubated, meaning he comes off the vent. We don't have a timeline for that yet, but I'm guessing maybe Sunday or Monday. Please pray it happens sooner than later - that is a HUGE hurdle for heart kids!

Thank you so much for all of your prayers and sweet emails/phone calls this week. I'm trying to respond back to them all - I'm getting there. :-) Please keep those prayers coming!

A little better...

And the roller coaster continues! After a rough time post-closing, Bodie is doing much better now! PRAISE GOD!!! He's still dependent on lots of meds, but is stable! His sats have come up a lot and he looks much better. And it was so beautiful to see his chest closed and to know that he's past that stage! The surgeon who closed him really did a great job - it looked wonderful!

The next few days will be spent very slowly weaning him down off his meds, so we could really use your prayers for Bodie, that his little body tolerates the weaning and he gets used to his new altered physiology. That is really our next big hurdle - once that's done, we can start looking forward to holding and feeding him! Pray also for rest for Dusk, my mom and myself, as the constant driving back and forth to the hospital is starting to take a bit of a toll on all of us.

Rough time closing our little guy's chest

The good news first - Bodie's chest is now officially closed!!! One more step down! YAY!

The not so good news is that it didn't go quite as smoothly as we had hoped. He took a dip right after they closed him (his blood pressure dropped, his sats dropped etc.) :-( Our poor guy. So, they put him back on everything they had weaned him off of (the paralytic, the epi, the nitric and the pacemaker) and he seems to be slowly doing better. Our nurse said it's not unusual to have this kind of complication and that something they're doing should help him through the transition. She also said she thinks he's dehydrated and is really hopeful that increasing his blood volume via infusion will help considerably. So he got a blood transfusion as well - and it was a directed donation - which means it was donated by one of our faithful and generous friends who responded to our request for blood and platelets for Bodie!!! Thank you!

So, definitely not the good news we were hoping for (it's so true that having a heart child is two steps forward one step back), but at least they got his chest closed and we're trying to focus on that and remain grateful for that step. Since this is so similar to what happened to Bodie after the surgery, we're hoping it's just how the poor kid's body responds to major changes like this. But we're of course really worried about him - so please send up some extra prayers for him today!

I will update once we know more...

Another good day for Bodie!

Just wanted to pop in and let you all know that Bodie had another good day today! They continued to lower his nitric oxide and he responded favorably (which is great - apparently, that can be a hard one to wean off of) and he is completely weaned off his epi (which is also another big hurdle since that drug helps to pump his heart - it means his heart is doing well enough not to need it!) His fluid retention is also great - he's not nearly so puffy now, so the nurses and docs are really happy!

They're planning to close his chest tomorrow (Thursday), which puts us one step closer to holding him again! YAY!!!!! (they won't let us hold him when his chest is open, as it's too dangerous with his little sternum exposed like that) Then, they start looking at weaning the drugs and slowly weaning him off the ventilator. We don't know how long the process will take - it really differs from kid to kid. So, we just watch and wait and pray - and hope his little body responds well to the weaning process!

So, we don't know yet truly how well he's doing (since the machines and meds are doing most everything for him, allowing his little body to rest and recover), but what we do know is that, for where he's at in the process, he appears to be doing very well. His little body is responding well to each thing they're doing and he's been stable other than the first 12 hours or so. We're past the 48 hour mark, so out of the most critical stage! Now, we're onto the next stage - waiting to see how he does. So, please keep the prayers coming and I'll update once we know more (and yes, as many of you have suspected, no updates generally are a good thing - it means things are stable and Bodie just continue to progress)!

Amy

Our brave fighter

Bodie is doing SO well!!! My mom and I spent a few hours with him at the hospital today - he's such a cutie pie, even recovering from open heart surgery. He's still completely sedated, but they were able to stop the paralytic and significantly reduce the nitric oxide and his oxygen sats stayed high! YAY!!!! His nurse is really happy with how well he's doing. God willing, we won't see any changes and can sleep a little better tonight!

While we were there, one of the head cardiologists stopped by to talk to us and also seemed really happy with Bodie's progress. He said that on a scale of 1-10 (10 being the worst that kids come out of the Norwood surgery), he'd put Bodie at about a 4, so definitely better than average! (Our nurse piped in that she didn't even think Bodie would be that high if it weren't for his low sats!) We also had an opportunity to talk to him at length about all of our questions and it was a really helpful discussion - our timing was perfect.

All in all, today went great and Bodie continues to be stable. Please continue to pray for him over the next few days. We have crossed the 24 hour mark since the surgery and that's a big hurdle. Tonight and tomorrow they'll work on reducing his fluids (he's pretty puffy at the moment) and then, if all goes well, they'll close his chest Thursday and then the real test comes - they'll start lowering the meds he's on and see how his little body responds. So, he definitely needs your continued prayer!

Thank you all for your kind thoughts and prayers as you've walked this journey of faith alongside us. It has meant more to us than you know that so many of you have offered to help us and have told us that you're praying for us - it has given us such peace. We are so hopeful that God will continue to heal our little miracle boy over the the days and weeks ahead.

Better morning

After a rough start last night, Bodie seems to be doing better this morning, praise God!!! His oxygen sats were really low last night, so they had to take the patch off his chest and look at his heart to make sure the shunt they put in wasn't being compressed. The good news is that the surgical site looked "fantastic" (no bleeding, leaks, etc.). They also put a little stint in to relieve some of the pressure on the shunt. At the same time, they changed a bunch of things, including putting him on a paralytic (which is common to treat hypertension and not a huge step since he was already so deeply sedated) and adding some meds. They monitored him all night (I called every 2-3 hours to check in) and his saturation levels came up and in general things were looking a lot better! They're not sure which measure made the impact, but something they did worked, so we're really grateful!

As of this morning, things were looking good and they removed the external pacemaker - the nurse told me he has a nice rythym! I think they're going to try to reduce some of his fluids today and then we have at least another day before they start thinking about taking him out of sedation and closing things. So, he's definitely not out of the woods yet (still very much in a critical state) and we have a long road ahead of us, but at least we're making progress, if slowly. Please continue to pray for our little guy's body and that it can heal as much as possible over the next few days!!! Thank you so much for your continued prayers for our little fighter!!!

Rough night

Bodie is having a rough night. :-( They had warned us the first 24-48 hours were the roughest, but it's hard not to worry. Pray, pray, pray they can get his oxygenation saturation under control.
Sent from my Verizon Wireless BlackBerry

Out of surgery...and into the critical phase

Once again, our pastor (who apparently is a budding videographer on the side) put his mad skills to work again today and took this video of Bodie coming out of surgery...

http://sharing.theflip.com/session/28b027685e090e51d46fd39d38319a89/video/10845526
(having some difficulty with the site, so have to copy paste the link into your browser - sorry!)

Bodie is stable!

Dusk and I just left the hospital. Today went as well as it could have - praise God! Bodie's back in the CTICU on more meds than I can count, lots of tubes, wires and catheters, a ventilator and under heavy sedation - all to be expected. The next 24-48 hours are all about making sure complications are avoided. Then, they start thinking about weaning him off the vent, sedation, etc. And see truly how well his little body does. So, thank you for all of your prayers - and please keep them coming!!! He'll continue to need them, especially during this critical period!

- Dusk and Amy
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Update

Just finishing up the surgery - his heart is beating now and he's off bypass! PRAISE GOD!!!
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No update, but a thank you

No updates yet, but I just wanted to let you know how much better we're feeling already. I know it's 100% because of the infusion of prayer we've gotten in the last hour. So thank you!!! Please keep praying that Jesus is watching over our sweet little boy!
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And so it begins...

They just took Bodie back for surgery. Hands down hardest thing I've ever experienced as a parent is to let your child go knowing it may be the last time you see him alive. Hoping and praying for the best, but finding it hard to stay strong at the moment. Please stay strong for us.

Prep should take about 1 and 1/2 hours, the actual surgery about 45 min and then another hour and a half or so to stabilize and close him. So, we probably won't have an update for a while.

Please, please, please pray!
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Prayers for Bodie

Please keep Bodie in your prayers tonight and tomorrow. His surgery is scheduled for tomorrow morning - we're not sure what time yet. We know it's not the first surgery, but will likely be on the schedule second - so, probably 8 or 8:30. It should last 4 hours or so and they'll update us periodically and we'll pass those updates along to you. Then, assuming the surgery goes ok, the next 24-48 hours will be critical. So, we need nothing but to be bathed in prayer for the next 2 days - for Bodie, for the doctors, for the nurses and for everyone involved. We're scared (out of our minds, if we're being completely honest), but we know this is the only chance our sweet boy has at life, so we have no choice. We know that God is control and he has given our sweet boy to us for the time being. Tomorrow, we will hand him back into his Father's hands and we pray ferverently that He will hand him back to us to raise. Please pray with us.

In related news, Dusk got to see Bodie today for the first time since he was born (since he's been sick, he wasn't allowed in the NICU)!!! It was so amazing to see the look in Dusk's eyes when he locked in on his son. :-) We both got to hold Bodie, too, which was an incredible experience. I got to hold him for a while and he just slept in my arms. It was beautiful. Then, the nurse tried to give him to Dusk a little later and Dusk did get to hold him, but only momentarily, since he got super fussy. According to the nurses, Bodie is a fussy little bug. We're hoping it's just because the poor kid hasn't eaten his entire life thus far - and not a reflection on his personality. :)

Here are a few pics of our special day with Bodie today:

Bodie rides in style

Bodie just got transferred to CHLA! He's in the CTICU and they're stabilizing him right now, so I thought I'd pop out and give you a quick update. At about 2pm, they told us they had finalized everything and Bodie would be transported to CHLA between 3 and 3:30 - and they asked me if I wanted to ride with him!!! I was so excited to be taking the next step toward getting our little man well. So, my mom and I hurried to get my room packed up, get me discharged and headed back up to the NICU.

The transport team from CHLA is, in a word, amazing. My mom said they looked like the Navy Seals, and she was totally right - I was in awe of the way they works and how wonderfully they handled Bodie. The best part was that when I mentioned I hadn't held him yet, they stopped what they were doing, looked at me for a second and said "we'll change that today." So, once he was ready to go, they swaddled him and let me hold him!!!! I was in tears - I couldn't believe it! Here are some pics...(and, btw, his hair is SO blonde - I didn't know until today since I hadn't seen the back of his head yet)...


Bodie's Ride


The A-Team


Mommy holds Bodie

Bye Bye Cedars...Hello CHLA!

Update on the Bodie-man

Hi! I've been meaning to update for a couple of days, but honestly, between visiting Bodie in the NICU, pumping every 3 hours, recovering from major abdominal surgery and passing out pretty often from the Percoset, I just haven't found the time that I expected to have! So, sorry for the late update.

Bodie is doing great and holding his own, which we're thrilled about. They initially had a hard time getting a central line which was a huge concern, but finally got one in successfully Wednesday night, thank God! Right before inserting the line, they sedated Bodie and he ended up de-satting (his oxygyn saturation level dropped), bradying (his heart rate dropped) and having an apnic episode (he stopped breathing), all as a result of the sedation. I was there when it happened and even though I knew it couldn't be as serious as it felt since the doctors weren't completely freaking out, they were aggressively trying to get him back breathing and what-not and it was pretty traumatic for me. Lucikly, he has not had any episodes since then and the doctors have assured me that those are common reactions both to the medication he's on and sedation.

Due to the his condition and the fact that they are drawing blood every 6 hours or so, he became anemic and needed a blood tranfusion yesterday and will have another one this morning. He did great with the one yesterday and they don't expect problems with the one this morning - he's really cute and pink now! It's neat to see!

All of his tests so far have come back completely normal, including the brain scan! Praise God for that! His echos are showing that he's stable and that his PDA is staying nice, big and open (which means the medication is doing exactly what they want it to), so we're thrilled about that. One doctor, after looking at his chart, said "he's the perfect candidate for the surgery!" (made a mama's heart sing, that's for sure). They're doing a renal scan this morning, but since his urine output has been great, they don't expect to see any surprises. His genetic test results have not come back yet, but the neonatologist told me that with boys who are born with HLHS, if there is no visual indication of a chromosomal abnormality, a genetic caryotyping isn't even the protocol since it's so unlikely that anything chromosomal is going on. Again, PRAISE GOD!!!

I have gotten SO MUCH more time with him, it's been amazing. Although I haven't been able to hold him yet (they don't want to risk disturbing any of his lines), they've really increased my access to him, allowing me to sit and stroke his head and basically any part of his body not covered by a line or tube! His nurse yesterday let me help change his diaper and taked his temperature twice, which was so wonderful! Oh, and I got to see his eyes yesterday! Usually the little guy is sleeping, so I hadn't seen them yet. But when I went in yesterday morning and pulled the blanket on the top of the incubator back, he was staring right up at me! I don't know who was more surprised - me, to see his eyes, or him, since I'm sure he had no idea who I was! It was so neat...hard to tell what color his eyes are, but his hair is definitely strawberry blonde-ish...and yes, he looks Sierra! I can't wait to get home and compare baby pics of the two of them.

Speaking of which, I'm getting released today (I stayed until the insurance company kicked me out!). I'm sad to leave Bodie since we don't know yet whether he'll be transferred today or tomorrow. But it will be nice to spend some time with Sierra today and tomorrow - and sleep in my own bed for a couple of nights before we head over to Children's for an indeterminate amount of time.

Please pray for Bodie as we head into the weekend and into next week. This week has been surprisingly smooth and easy (all because of the amazing prayer warriors we have hard at work praying for him, I know), but we are preparing ourselves for a really difficult week next week. Please just pray for our little fighter - pray for his little body, that he responds well to the surgery and pray for the surgeons, that they have the wisdom to do the best job they can. And pray for Dusk and I, that we can stay calm and just trust God with our beautiful little boy next week. :-)

I will update as soon as we know more (including when he gets transferred). In the meantime, thank you for all of your kind thoughts, prayers, blood and platelet donations (we've been totally overwhelmed by your response to our request for help with that!!!)! Asnd here are a few new pics of our little fighter...

Amazing video introducing Bodie...

Our wonderful pastor Matt stopped by and spent the better part of the day with us yesterday and captured this amazing video for us. We're trying to link it directly to the blog, but in the meantime, go here to see it:

http://sharing.theflip.com/session/762cada8780c0c8dd3ea42a90dcc805a/video/10681618

Blood Donations

My dear friend Erika has been hard at work behind the scenes, gathering information on blood and platelet donations...

Blood and Platelet Donations for Bodie Bennett
Bodie needs at least 6 more donors for both blood and platelets.

Blood: Because Bodie is A+, he is compatible with the four most common blood types (A+, A-, O+, O-). You can donate blood if you are either A or O.

Platelets:There is an urgent need for people to donate platelets in addition to blood. ANY BLOOD TYPE CAN DONATE PLATELETS.

Platelets will be an important part of Bodie's surgery. Platelets will help control the loss of blood which will ensure the surgery will go smoothly. The difference between giving blood and giving blood along with platelets is time. The whole process should take 1-2 hours.

Criteria for Donors: Weigh more than 110lbs, have not left the country in the past year, did not have any tatoos or body piercings in the past year and some medications could disqualify a donor as well. For platelets it is important to avoid any kind of aspirins. Donors can not take pain relievers 48 hours before giving blood. No antibiotics 72 hours before giving blood. Call George, the contact person, to ask whether or not you would be a qualified donor.

Little Bodie's surgery is Monday and people can give blood up to Saturday. They just need to call George to schedule it.

Blood donation contact number: 323-361-2370
Contact person: George

First 24 hours down...

Just wanted to give you all a quick update. Bodie is stable! I finally got the chance to see him in the NICU this morning at around 1am (Dusk had been in the NICU with him for awhile, but it was the first time I could get up without feeling too woozy and I wasn't sleeping anyway) and then Dusk and I saw him this morning at about 10am and my mom was able to get in with me this afternoon! He is doing great, under the circumstances. His oxygen saturation levels were alarmingly low yesterday, but either the machine was off or something changed, because they leveled out. He is still at Cedars since there have been a few unplanned HLHS cases coming into CHLA, so there are no available beds at CHLA right now. I think they're still hoping to transfer him tomorrow, but it depends on bed availability.

Bodie is stable, but they've had difficulty getting a central line in him (apparently, it's not an uncommon problem with newborns). They've managed to get 2 iv's in his hands, but they're just not as stable as a central line. They've tried a couple of times unsuccessfully, and don't want to risk trying again. So the next step is to bring in a surgeon and surgically put a permanent line in. It sounds like that's our best option - I think they're planning to try that tonight. Also, the meds he is on can cause problems breathing, so we expect him to have to be intubated at some point before he's transferred to CHLA. They did a scan of his head last night and it showed NO abnormalities! Praise God! (things could still come up, but it's definitely a good sign that nothing has shown up yet!!!)

I'm doing well - recovery from a c-section is definitely a different ballgame than recovery from a vaginal delivery, but I'm already up and around walking, albeit slowly - pain meds are wonderful! I haven't seen Sierra yet, but I hear from my mom and dad that she's really excited to have a baby brother! Since Dusk is sick, he can't be in the NICU any longer, so he went back home to be with Sierra and my mom is at the hospital with me.

Please continue to pray hard for Bodie - he has a tough battle ahead of him and will need all the love and prayers he can get to make it through!!!

Bodie Isaac Bennett

Welcome to the world, our little fighter...

7lb13oz, 20.5in

Bodie...a small mining town in the Eastern Sierra Nevadas - shows our love for the mountains and matches his big sister's name Sierra perfectly.

Isaac - in the Bible, God asked Abraham to sacrifice his only, long awaited for, son. Abraham willingly did so, and God rescued Isaac at the last minute and rewarded Abraham for his faithfulness. We chose this name as a constant reminder that our children are not ours, but a gift from God, to be consecrated to Him and to His purposes.

May Bodie Isaac glorify God through his life.

Introducing

Bodie Isaac Bennett. 7 pounds plus. He is now in the NNICU ward for testing. More details to follow
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The calm before the storm

If this proverbial saying never had meaning to us before, it sure does now! I think any parent experiences this before the birth of a child, but it is so much more pronounced when you're expecting a high risk child who may or may not make it. So many unknowns, including the length of baby's hospital stay, looming ahead of us. So, we're choosing to take today to relax and enjoy the calm and normalcy of life as we currently know it.

Dusk had to work part-day today, so Sierra and I relaxed and cuddled all morning - I even painted her toenails (she'd been begging me for a while, but you know how it is - life just gets in the way sometimes). The weather is absolutely incredible today (crazy for mid-February), so we all got to eat lunch outside in the backyard, listening to the fountain gurgle and watching hummingbirds fly. It was pretty amazing. Then, we napped together. Once Sierra is up, my mom should be here and we're all going to Sierra's favorite park and then going out for dinner tonight. (We're actually going to the same place we went to the night before I was induced with Sierra, so apparently, it's becoming a family tradition!)

It's been so nice today to just relax and not worry about tomorrow. We're at such a place of peace, and we know it's because of all of your prayers. (Believe me, given what we're about to go through, the fact that I'm sick, Dusk has now caught the cold from me and my back is almost completely thrown out, there can be no other explanation for this peace other than prayer! :-)). So thank you, thank you, thank you for the prayers - please continue to keep them coming as we head into tomorrow. Pray for Baby - pray for a miracle, pray for baby to be as healthy as possible; pray for the doctors - that the c-section goes smoothly and everyone who needs to be there can get there; pray for Dusk and I - that we just glorify God in whatever this whole journey will bring.

The c-section is scheduled for 2:30, so I'll update to the blog as soon as I can after baby has arrived (with Sierra, I didn't get to hold her for the first 5-10min, so since I didn't have anything to do, I literally was texting while they were sewing me up, but my guess would be they won't let me do that in an OR after a c-section, so there will probably be a delay of some sort). My mom and dad will both be at the hospital, so I'll probably ask them to update once we know anything!

Thanks again and we'll see you all on the other side! :-)

- Dusk, Amy & Sierra

How can I help?

I get asked this question so often, and while I am ever grateful for the loving support of family and friends, the truth is that we don't know yet what help we'll need. We're not being purposely evasive, I promise! :-) We will absolutely know more about our needs once baby gets here. What we can tell you is that for the moment, we're totally set. My mom, bless her heart, is coming to town Monday afternoon (the 15th) and planning to stay a month or so to help us out in whatever way we need. THANK YOU MOM!!! (Then Dusk's dad Alan and his wife Jan will be coming to help after that - we're so blessed!) For at least the next week or two, we're set - I've loaded up our freezer with 2 lasagnas, a manicotti, baked potato soup and now, chicken pot pie (what can I say? I've been nesting and cooking).

Our dear friend Natalie (from church) has offered to set up a dinner rotation, so I know we'll be taking advantage of that at some point. My guess would be that it will be sometime after the baby's surgery - maybe the week after. It will largely depend on whether I am able to leave the hospital to come have dinner with my mom, Dusk and Sierra or not. If you live locally, but do not attend our church and would like to help out with meals, we welcome the help! I'll post Natalie's contact info on the blog once we get closer to the rotation and you can totally help out!

In the meantime, there are really only 2 things we need: your prayers - and your blood.

PRAYERS: Please continue to pray for a miracle for baby and health and peace for Dusk and I this week. I have come down with a pretty bad head cold, so that is complicating things a bit. I called both the OB and cardiologist on call today and have been cleared by both of them to continue with the c-section as planned on Tuesday. But I sure would love to be past this cold by then as it will undoubtably make my c-section recovery easier if I'm not also fighting a cold at the same time; not to mention that they likely won't let me into either the NICU or PCICU to spend time with baby if I'm coughing or showing signs of illness. (Thankfully, there doesn't seem to be much concern with baby catching it from me - just the inconvenience of me not being allowed into the NICU.)

BLOOD: CHLA does allow directed blood donations for patients, so if any of you are interested, we'd love to have you donate blood for baby. (I am not eligible for donation, being in c-section recovery - and Dusk is likely also ineligible due to medications for his heart condition, so we're looking to other close friends and family members to help us out.) If you are interested, donations have to be made to CHLA between 2/16 and 2/18 (so that there's enough time to test and clean it) and you need to know baby's name and DOB to donate (so, you have to wait until after baby is born). The blood donation center at CHLA is open Tues-Thurs, 8am-4:30pm and you can call 323-361-2441 to set up an appointment. If you are interested in donating blood, please email me and I'll make sure you're on the email list of people who need to know baby's blood type as soon as we know it. Thank you in advance!

Thank you so much for all of your help and prayers - we're so blessed by all of you and so appreciate all of your love and support as we're about to embark on this scary journey!

A week of lasts

What a week this week has been! I had my last perinatologist appointment, my last OB appointment, my last non-stress test - and my last day of work!

On Wednesday, I had my last perinatologist appointment and all looked good. One of the things they really worry about with heart babies in general is growth restrictions, but baby is growing right on target! The doctor was really pleased with baby's growth and seemed genuinely surprised we had made it to full term. He actually said he was really impressed and that I did a good job. :-) We all know I didn't really have anything to do with it, but it was nice to hear him say it! He estimated baby's size on Wednesday to be around 7lb 2oz, which made him really happy. I told him I was hoping for a bigger baby, but he said where baby is at is optimal for surgery and that I should be happy as well. So, baby staying in a bit longer at this point is just gravy to get baby bigger!

Then, on Thursday, I had my last OB appointment and non-stress test. The nurses were laughing because the baby's heartrate was its usual super low 95-105 most of the time, until they came in and started talking about the surgery - as soon as the word "surgery" was mentioned, the baby's heart rate shot to 140! It was really funny. The doctor checked me and said my cervix is soft, but still closed, so that was a relief. I've been having A LOT of contractions (they were so bad Tuesday night, I thought we were going to have a trip to Labor & Delivery), but apparently they're not doing too much. Since Sierra didn't want to come out either, I can only assume I have a really nice, warm, comfy uterus!

Then, I had an interview with a pediatrician last night and that went well. Unfortunately, we can't use Sierra's pediatrician as much as we'd love to (we LOVE her), because we'll need baby to be routed to CHLA in the event of an emergency, and Sierra's pediatrician is in the Torrance/Long Beach Children's Hospital network. So, we had to find a new pediatrician for this baby that will allow us to continue seeing the cardiologist I've been seeing my whole pregnancy - and put is in the CHLA network. I really liked the one I met last night- and she has another HLHS patient (a 1 year old little girl) and other CHD patients, so I feel like we'll be in good hands!

Yesterday was my last day of work and it's so weird to be out of work now! I was running around like mad yesterday trying to get my office cleaned out for our temporary CFO to cover for me while I'm on maternity leave. My work was so great about being flexible - and I'm excited I was able to work all the way up until my due date!!!

So now, we're just trying to relax and get last minute stuff done between now and Tuesday when baby Bennett makes his or her arrival! Please keep praying for Baby!

A view from the outside

Since I'm too cheap to splurge on a professional photographer, I enlisted Dusk's help to take some pics of the baby belly today (at almost 38 weeks), and these were our best ones...

And my personal favorite...Sierra staking her claim to her "lil sisser" - She has been adamant since the beginning that this is a girl. We try to explain to her that it might be a boy, but she won't hear anything of it. She won't even let us discuss boys' names in front of her, saying she doesn't like any of them, because she wants a "lil sisser"! What a silly girl...

Holding patterns and prayer circles

We're still in a holding pattern! I had my 37 week appointment yesterday, which included a non-stress-test and a cervical check. I've been having A LOT of contractions, but nothing regular. It's weird since I never had a single contraction with Sierra until I was induced (or, as we like to say, we served her an "eviction notice"). But my cervix is still closed, so it doesn't look like they're doing anything, which is good news. Our hope is that baby will either come before Monday - or will wait until his or her birthday on the 16th. We'd prefer for baby not to come next week as the surgeon is out of town the entire week afterwards, which would mean someone else would have to do the surgery if baby comes next week. So, please send "come out quick or stay until we evict you" vibes! :-)

Thank you so much to everyone who has been praying for us. We have really felt it. The elders at our church came to our Home Fellowship this week and prayed over us. It was an awesome time of prayer and fellowship and we just felt so comforted to know that we're following the example set in James 5:14 "Are any among you sick? They should call for the elders of the church and have them pray over them, annointing them with oil in the name of the Lord. The prayer of the faith will save the sick..." (Please keep in mind that we do not subscribe to the "name it and claim it" doctrine so to speak, but we do rejoice that we worship a God that asks us to bring our petitions before Him in full faith that He will answer them.) We are so grateful to be a part of such a faithful community who has come alongside us to pray for a miracle for our Baby. Please continue to pray!

Speaking of prayer, I have an update on sweet little Nathaniel! As I posted, his surgery was Thurs., the 28th. Well, Tues, Feb 2nd, he came home, after just over5 days in the hospital! What an amazing recovery he has had - keep in mind that he had open heart surgery and is home already! Praise God! He has some tough recovery ahead of him, but by all accounts is doing great! It is so inspiring to us to see his story unfold and to know that he is now PAST all 3 of the planned surgeries our baby will go through. Thank you so much for praying for him and please continue to pray for him as he fully recovers.

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!

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.

Amy

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?

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!
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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?
	Boy
	Girl
pollcode.com free polls

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!!!

"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!