Thursday, September 30, 2010

Rethinking the day that changed everything

October 1, 2010

Dear Dr. Rotmensch

One year ago today, my life was forever changed. To you, I’m sure it was just another ordinary day. Not one that particularly stands out to you. Just another day where you see a prenatal patient and have to deliver news that will stun her into silence, punctuated only by the tears flowing down her face. I’m sure to you it was simply another day, another part of your job that you probably don’t particularly enjoy. But to me, it was everything. It was the day I went from being a normal everyday mom to a “heart mom.” The moments of the morning of October 1, 2009 will forever be etched in my memory: the casual laughter between my mother (my husband had to work so couldn’t attend – thank God my mom was able to), myself and the ultrasound technician, the mood shifting abruptly when you walked in with two colleagues (by the way, it’s never a good sign when you walk in with colleagues), the hushed tones with which you spoke with them as you went over every millimeter of our baby’s heart and then your somber expression, the murmured “I’m sorry’s” of your colleagues as you explained that our baby had Hypoplastic Left Heart Syndrome, me asking “am I going to lose another baby this year?” and you softly responding “that’s a really tough question to answer.”

That was just the first of many appointments with you, almost every one of which included the terms “termination,” “fetal demise,” “heart failure,” and “bad heart,” until my husband finally told you to put something in the file that we no longer wanted to discuss termination. I don’t fault you for bringing it up, we know that you were just doing your job and felt as though we needed to understand the seriousness of our child’s condition and our “options,” but we also wanted to make it clear that termination was never an option we would have considered; that simply wasn’t our choice to make.

On October 1, 2009, I was scared, facing an extraordinarily difficult future, one in which you gave me very little hope for my child or our family. On February 16, 2010, I gave birth to Bodie Isaac Bennett, the bravest little fighter I have ever met. And now on October 1, 2010, I stand in a vastly different place. I stand in a place of hope, of excitement for my son’s future, of such unbelievable gratitude that I chose life for my child. I write to you so that you can know that an HLHS diagnosis can have hope.

Yes, HLHS is scary. Yes, it is a horrible diagnosis. And it takes the lives of far too many sweet, innocent babies every year. But for every family that I know who has lost a precious child, another family has a child that is thriving. Understand that – my son is not merely surviving. He is thriving. He had an incredibly rough start to life, one that has included three open heart surgeries, two cardiac catheterizations, a pacemaker and the majority of the first 5 months of his life spent in the hospital battling various infections that actually had little to do with his heart. I would take all of this from my son in a heartbeat if I could, but I can’t. And despite all of that, his terribly rough start? Now, he is absolutely thriving. He is a happy, bubbly and sweet 7 month old little boy with at least 2 years before his last “planned” open heart surgery. He smiles all the time, blows raspberries, laughs at his big sister, rolls over, chews his toes, puts anything and everything in his mouth, and pretty much does everything else a heart healthy 7 month old baby does. You would never know from looking at him that there is anything different about him, unless we happen to let you see his scar. I am including pictures so that you can see just how well he’s doing.

I am also including pictures of other HLHS adults (!) and children that, like Bodie, are absolutely thriving.

These beautiful women were truly pioneers in the field, having their surgeries back when very few babies survived. I am so grateful that their parents were willing to undergo risky experimental surgery, since it’s because of brave parents like theirs that my son was able to undergo surgeries with survival rates upwards of 90%. By the way, all three women are doing extremely well (both Jeni and Brooke are married), none have needed heart transplants, and the oldest living survivor with HLHS, Bryan, is 32 years old!

Jeni Busta, 24 years old

Brooke Fescenmeyer, 25 years old

Heather Fuller, 28 years old

And these children are the next generation of HLHS fighters, the ones who, like Bodie, are literally writing history everyday.

Addison, 22 months (post-Glenn)

Townsend, 21 months (post-Fontan)

Grace, 20 months (post-Glenn)

Aly Jean, 15 months (post-Hemi-Fontan)

Travis, 10 months (post-Norwood and Shunt Revision)

Jake, 6 months (post-Glenn)

Olivia, 6 months (post-Glenn)

Zoe, 5 months (post-Hemi-Fontan)

I wrote you this letter because I want you to understand that many, many, many children are living with HLHS and thriving. I know you don’t get to see them in your practice, because you only see the babies before they’re born – not once they’ve been through surgery later. Years ago, you are right, there was literally no hope for these children. But we don’t live in that world anymore. We live in a world where medical advances are making life possible, one heartbeat at a time, for these children. And we, as parents to these bravehearts, are abundantly blessed. And I want you to understand that. So that the next time you have a pregnant woman sitting in front of you, tears streaming down her face, you will remember this letter and that that there can be hope for these children. So that another woman, and another family, won’t have to unnecessarily be put through months and months of heartache thinking there really is no hope. And maybe, just maybe, amidst the language of “termination,” “fetal demise,” “heart failure,” and “bad heart,” you will also include words like “hope” and “thrive.” And maybe, just maybe, another braveheart, and another heart mom, will be born.

Thank you,
Amy (and Dusk, Sierra and (most of all) Bodie) Bennett

Yes, I did mail this letter to my Perinatologist.
And a huge thank-you to the HLHS survivors and moms who helped me out with this project. :-)

Tuesday, September 28, 2010

Here I am, Lord...Send Me

I have debated with myself for months about whether or not to post this blog entry, simply because I know that not everyone who reads our blog shares our faith. And, truthfully, I don’t want any of our faithful followers to write me off as a “religious nutjob” (is that even a word?) and stop reading the blog. Anyway, as I said, I’ve debated, and guess which side ended up winning? The side that always chooses to overshare. LOL. I felt it was important to share this. So, here goes…

During the 2008 presidential elections, a lot of things were put into perspective for me, particularly with regard to issues on the California ballot. A lot of issues that are loosely referred to as “moral ground” issues. One such issue was parental notification (the right of parents to be notified prior to a doctor granting their minor child an abortion). For some reason, the issue really hit home to me. While I understand the argument on both sides of the issue (had to get something out of my law school education, right?), it just struck me so profoundly that we were seriously debating the technicalities of allowing one individual to end the life of another. It really struck me how far America’s moral compass has shifted over time. (You can argue that the shift is a good or a bad thing, but let there be no denying that it has indeed shifted.)

In any case, I felt an undeniable calling upon my heart to do something with the sanctity of life movement. I didn’t know what it was, but I just felt that God was really calling me to that arena. I thought perhaps he wanted me to switch jobs, so I started looking for accounting positions within local crisis pregnancy organizations (I apologize to my former boss, Carolyn, who reads this blog and didn’t know until this exact moment that I was looking for another job!). I prayed ferverently for God to use me. I believe my prayer went something like “Father, I feel a huge calling on my heart for the unborn. I don’t know what it is, but I know you have plans for me. Use Me. Here I am Lord. Willing and ready. I don’t care how you use me. Just use me.” (Yep, how’s that for a loaded prayer? By the way, I don’t recommend praying a prayer like this unless you’re really ready for it – and without checking with your husband first! Uh - oops)

When God didn’t answer within the 5 second time frame I allotted him, I assumed I must have misread what I was feeling and promptly forgot about the whole issue. What can I say? Patience has never been my strong suit.

Enter February 2009, when we discovered we were carrying a child with Trisomy 21 (Down Syndrome) and a cystic hygroma (far too much fluid accumulating behind the neck of the baby). “Aha!” I thought. “THIS is what God was preparing my heart for!” From the very first moment our OB asked me incredulously “really? Even if the CVS test comes back positive for Down Syndrome, you won’t terminate?” I thought we had our platform to be able to speak for the unborn. It was a short-lived opportunity as that baby sadly died in utero a month later. It was a tremendously difficult period for us, but we felt as though God had used us in a wonderful way and we had “passed” the test. Boy, we had no idea.

Enter October 2009, when we found out our unborn baby had Hypoplastic Left Heart Syndrome. I’d say that blew the lid off of this calling entirely. The day my journey began as a heart mom. The day that our son and our family would forever after be a testimony to the sanctity of life. Every prenatal appointment when someone would ask curiously when I had found out about our baby’s condition (if we had found out early enough, why didn’t we terminate?). Every time I had to assure the perinatalogist that no, we were not interested in termination (we finally had to ask him to put something in the file because we were so sick of the discussion). Every time I have an opportunity to tell someone about Bodie’s heart condition and they look at this robust, cheeky little “normal” kid in awe. And every single time I run my hand up the beautiful scar on his chest. Yes, I found my calling. Just a lot closer to home than I ever imagined.

Monday, September 27, 2010

Throwing out the book

I swear, he's just thinking of ways to torture his poor mama...

Man, this kid...he absolutely refuses to play by the rules. Might as well just throw the rulebook out entirely. Apparently, he heard that kids are supposed to be more stable and have consistent sats in the mid 80's after the he has decided to sat all over the place. His sats had been a bit crazy right after surgery and the first couple of days we came home, and then they appeared to be settling down in the low 80's. But then the last 2 days, his sats have been literally bouncing around anywhere between 65 and 85! Utter craziness...He spent the better part of last night in the low 70's, dipping sometimes down into the 60's. Needless to say, I did not sleep well, constantly up and staring at the pulse ox monitor like a strung out college student who hasn't slept in days. Luckily, he had a cardiology appointment already scheduled for today where I was able to pick his cardiologist's brain about it. I literally cried to her about how this wasn't supposed to happen - I was supposed to be able to relax after the Glenn!!!

She's not really sure why he's doing this - a number of things could be causing it. The leading contenders are: (1) his good old pulmonary hypertension (ack! We thought we had gotten rid of this after his shunt revision, but no, like that really annoying co-worker you can't seem to escape, it seems to be lurking behind every corner), which should improve over time, particularly since he's on Sildenafil; (2) a phase he's going through / something brewing under the surface (only time will tell on this one); (3) leftover craziness from surgery (apparently, it can take some kids, especially those with pulmonary hypertension, 4-6 weeks (and sometimes longer) for everything to settle back down after surgery); or (4) a collateral (basically, a vein that's supposed to pump blood to the lungs decides to go renegade and bypass the lungs, pumping to the rest of the body instead - probably not the best explanation (feel free to help me out here other heart moms!), but you get the basic idea).

It seems there's a decent chance a collateral has formed and if so, the answer is a trip to the cath lab where they'll coil it off. It's not an uncommon complication after the Glenn - and as much as I don't like the idea of having to send the poor little guy back to the cath lab, at least it's a relatively "routine" procedure (as much as injecting dye into your heart and maneuvering around in there is "routine"). But since we're still so close to surgery (only 2 weeks ago today), she wants to watch him for a bit to see what happens before sending him to the cath lab. There's also a chance he's a little too "dry" (meaning, his dieuretic is ready to be lowered so he's not peeing out quite so much - fluid balance is always the name of the game with these little guys) and that's contributing to the wacky sats. So, we dropped one of the doses of Lasix (yay!). Please pray that time and reducing the Lasix is all Bodie needs for his body to settle down and his sats to settle out in the mid-80's. We really would like to avoid another procedure so soon.

The echo today also showed lowered heart function from his last echo. Boo. :-( But the cardiologist says it's not time to freak out just yet. Again, we're only 2 weeks out from surgery, and everything is still settling down. Also, he was on Digoxin until surgery (Digoxin helps with heart squeeze and function) and they didn't put him back on post-surgery. It could just be that he's not quite ready to be completely off of it yet. So, she put him back on Digoxin. We have a repeat echo next week to see if there's any improvement. Please pray that his heart function improves between now and next week.

Ok, that's the whole business update (sorry it was so long). Now for some fun stuff! Since we're on house arrest and couldn't really go anywhere this weekend, Dusk decided to bring the fun to us, with a campout in the backyard!!! We BBQ'd dinner Friday night and then had s'mores for dessert! The kids got to go to bed sans baths (apparently a big treat for a 3 year old!). Bodie was relegated to the crib in the kids' room, but Sierra got to sleep in the tent with mommy and daddy! Eventually the planes flying overhead (nothing like the good old LAX flight pattern!) brought everyone inside by about 3am, but it was fun while it lasted! The best part, though is that Dusk, while pumping up the whole concept of the camping experience, happened to mention offhand that you pee outside when you go camping. (I assume he was envisioning something a little more rustic than our backyard when he made this comment.) Well, like 3-years old do, she absolutely glommed on to that offhanded statement, talking nonstop about how she gets to go pee on the grass when camping. Now, if you ask her what her favorite part about the campout was, she'll say "peeing on the grass." Lovely. I can only imagine what her preschool teachers think of our family when she reports about what she did this weekend. Fantastic. Well, the upside is that everyone had a great time!


Goofing off inside the tent

Wednesday, September 22, 2010

Little man is BACK

Hi everyone - so sorry I haven't blogged this week, but well, let's just say we've been settling back in and little man has been making that process kind of difficult so I haven't had a lot of free time. Can you say "edgy?" Man, he goes from fairly happy and smiling to screaming bloody murder in seconds flat. I leave the room and he loses it. I hand him to Dusk and he melts down. I think, in addition to some fairly massive headaches, we may also be dealing with some trust issues. ;-) The good news is that after 4 days straight of alternating Motrin and Tylenol during the day and Tylenol w/Codeine at night, we were able to go ALL DAY TODAY without any drug intervention needed! He was much more like his old self. From what I understand it's usually 2-3 weeks before these kiddos are back to their usual selves, but most turn the corner from being so terribly edgy at about a week and a half or so. Since today was post-op day 9, I'm really really really hoping we turned the corner today. Please pray that's the case!

I was even able to catch a cute pic of him being happy and laughing at me:

In other good news, it's absolutely true when they say that kids grow better post-Glenn! Bodie's eating about the same over the course of the day as he did pre-Glenn, but he's doing it by eating larger quantities less frequently. Praise God!!! (that means I'm spending a lot less time sitting down on the couch and feeding him - yay!). He's also gaining better - he's gained 10 ounces in the 4 days he's been home from the hospital! (his cheeks are totally filling out even more - it's so cute!). We had an unscheduled visit up to CHLA yesterday since his incision site was getting a little red - the NP looked at it and decided it's probably not infected, but we just don't want to take any chances with Bodie, so she prophylatically prescribed an antibiotic. Hopefully we'll only be on it until his post-op appt Friday. And speaking of appointments, he has his surgical post-op Friday (when they'll remove his remaining sutures) and a cardiology appt with an echo Monday (please pray that goes well - that will be his first post-Glenn echo, so I'm kind of nervous and praying we find all is well).

We had an opportunity to snap a few pics of Bodie's first day home from the hospital (while my in-laws were still here - YAY!):

3 generations Popo Alan and Gigi Jan with Sierra and Bodie
Take that, HLHS!One of the first times Bodie has been with BOTH mommy and daddy in a few days (I just love how he's reaching back for Dusk)

And finally, Mr. Townes has had a ROUGH week. The good news is that, after an unsuccessful extubation Saturday followed by a reintubation Monday, his extubation yesterday appears to have been successful! But there is still a little lung deflation, he's starting to sound "junky" (common post-extubation, but it's hard to cough it out when you're really weak) and his chest tube drainage is still more than they'd like it to be, so he could definitely use some prayers for that. Now, the big issue - SEDATION. They are still working on this, but thanks to the super diligent work of his amazing mom Sara, it appears very likely that all of the craziness they've seen over the past 10 days has been due to drug withdrawal (he is on some VERY heavy duty drugs), so they're now trying to strategically wean him down on the drugs to see where he's really at. PLEASE PRAY that the weaning goes well and they discover that there is no brain damage or lasting effects of all of the drugs he has been on. Please also pray for his dad Aaron and his mom Sara, who is 7 months pregnant! Please pray that she is able to rest some and sleep some and take care of herself. This whole process of watching her sweet little boy go through some really rough detox is so emotionally draining - I cannot imagine how difficult this has been for both Sara and Aaron. Pray for strength for the both of them - and for sweet Townes, whose body has been through A LOT in the last 10 days and is pretty weak. If you'd like to stay abreast of Townes's situation, his Care Page site is


Saturday, September 18, 2010

And that folks, is how it's done

So, here we are, 5 days post-op...HOME!!! (For the record, 5 days post-op is fairly standard at CHLA for a completely standard Glenn with no complications whatsoever - but for Bodie to do it in 5 days is nothing short of a miracle!!!) PRAISE GOD! What a huge relief to be home.

So now what? Now we keep Bodie in quarantine, under Doctor's orders, for at least 2 weeks. So those of you who live locally won't be seeing too much of us. No trips to church, to the grocery store, anywhere there might be other people who could compromise the immunity of a sweet little 7 month old boy recovering from open heart surgery! So, we'll miss you all - but we're looking forward to some relaxing time at home! :-)

And a few pics we took at the hospital yesterday and today:

My smiley boy

Trying his hardest to get his pulse ox probe off

Snuggling with mommy right before discharge

Urgent prayers needed for Townes right now

Please take some time to pray for Townes right now if you can.

They extubated him in the hopes that it would reduce his agitation.

Latest text from his mom Sara "Townes is still very agitated and not really relaxing; hard to tell if b/c of all the drugs or if he's had some brain damage. Heart rate& blood pressure going up too high so they are working on that. He needs lots of prayers b/c so many unknowns right now. Please pray for our sweet Townes."

Please please please pray for Townes!
Sent from my Verizon Wireless BlackBerry

Friday, September 17, 2010

Keep fighting, sweet Townes

Bodie is doing fine and continues recovering (thank you for the continued prayers), so I wanted to dedicate my post tonight to Townes and ask specifically for prayers for Townes.

Although he tolerated his chest closure well, Townes continues to struggle with sedation issues. And they cannot even begin to start weaning him off of the ventilator (he's on both nitric oxide and oxygen) and down on the heart function support meds (epi, dopamine, milrinone) until they can get his sedation under control. They have thrown so many sedation meds at him since Monday (they haven't had much choice since Townes is one STRONG boy and is a fighter) and they're not working so great anymore. So, they did an assessment of all of the meds he's been given today and are going to change things up to hopefully find a smaller mix of meds that actually work for him. I have faith that they'll figure it out, but in the meantime, Sara and Aaron sit and wait, and watch. Incredibly frustrating and worrisome for them.

PLEASE PRAY that the doctors can get this figured out so that Sara and Aaron can get their sweet boy back. Please pray also that he begins letting go of a lot of the fluid he's been holding onto (in other words, PEE!). I would LOVE to see Townes really start to turn the corner tonight and tomorrow - please pray specifically that is what will happen. We love Townes and hate to see him struggling like this.


Thursday, September 16, 2010

Goodbye Glenn head

Wow was today a better day! PRAISE GOD!!! I walked in this morning to find my Bodie back - very content and smiley, with a normal size head - YAY! He ate great today, gave me a fair amount of smiles and actually laughed once. He's still fussy from time to time (it takes a couple of weeks for them to get completely used to the new pressures from the Glenn), but it was miles better than yesterday! YAY!

A few pics from today:
A few smiles

Finally getting some much needed sleep with monkey

And more sleep with monkey

Just hanging out

Our meds are all set for home - the only thing we're still working on is getting him down off of oxygen. He's now down to 1/8L and we tried 3 times today to get him off of it completely and he was totally uncooperative, desatting quickly into the low 70's and high 60's. So their goal for tonight is to get him off of oxygen - please pray that they can do it!

Townes had his chest closed today and tolerated it really well. Praise God! The challenge they are finding now is how to sedate him enough that he doesn't try to self-extubate and thrash around, but not so much that he doesn't breathe. They want everything to start working again (heart, lungs, kidneys, etc.), so he can't be too heavily sedated. PLEASE pray for Townes tonight - pray that they find the magic sedation formula that works for him so he can be on the road to recovery!!!


Wednesday, September 15, 2010

Little Man is TICKED (part 2)

Boy, today was a tough day. Poor little man's face got more and more swollen all day and he spent the better part of the day whimpering at me and giving me puppy dog eyes.

Exhibit 1 (this was basically the expression on his face ALL DAY):
Exhibit 2 (his little marshmallow face - check out these swollen cheeks):

As much as we tried to entertain him today, he was having NONE of it. He is done with this whole "Glenn head" thing. Hoping and praying he's feeling better tomorrow!

And in good news, they took out his central line this morning and he pulled out his peripheral IV, so he was completely sans tubes and wires (other than the nasal canula) for a bit, before the IV nurse came in and put a line back in (in his foot, which is great so his hands are now completely free) - they don't like to be completely without access. He's now down to 1L of oxygen and all but his Lasix is now oral! They're trying to get him ready for home - praise God! He is now "floor ready" which means he can go to the step down unit, but he is still technically in isolation due to his previous MRSA in the blood (he will have to have 3 separate negative MRSA tests to be cleared from isolation), so we have to wait for an isolation room to become available on the step-down floor. That could take a while, so I'm hoping maybe we'll get lucky and he'll be ready for discharge before a room opens up and they can just discharge us directly from the CTICU.

Prayer requests for tonight:
1. Pray that they can wean Bodie off of oxygen so we don't have to go home on it.
2. Pray that the pressures in his head adjust, his pain becomes more manageable and he starts to feel better.
3. Pray for Townes, who is still stable and the doctors are expecting to close his chest tomorrow.
4. This afternoon, the a little 4-year old boy awaiting a heart transplant in the room right next to us coded. They worked on him for about 25 minutes, but couldn't get him back. I could hear his mother just sobbing through the wall. Please pray for that family tonight - I cannot imagine the pain they are going through.


Little man is TICKED

Good news - Bodie had a GREAT night. They pulled his arterial line, took him off Milrinone (so he's now off all drips!), weaned his O2 from 3L to 2L and started feeds! He did great overnight on both Pedialyte and breastmilk! He did so well taking his bottles that when he pulled his ng tube last night, they didn't even bother to replace it!

Less than Stellar news - little man is ticked off. I came in this morning to find his little head really pink and a little swollen. He is very awake, whimpering and giving me the saddest most pitiful eyes ever. He's clearly having some head pressure issues and he's REALLY annoyed with the nasal canula (all totally expected after the Glenn). The nurse gave him some morphine which then knocked him out enough that he didn't really want to eat. So it's been a challenging morning. All things we'll work through, but I feel bad for the little guy.

But aside from that, everyone keeps saying how great he looks. Really nice to hear! I'm SO proud of how well he's doing!

The plan is to switch all of his meds to oral today (instead of iv), work on weaning his 02 down and probably send us to the step-down floor in the next day or two. Please pray for all of this to happen smoothly!!!
Sent from my Verizon Wireless BlackBerry

Tuesday, September 14, 2010

Tuesday morning update

Sorry it took so long to update the blog. I've been spending most of my time holding Bodie's head as he's been thrashing around trying to self-extubate - man this kid is STRONG for an underweight 6 month old with half a heart!

Anyway, here goes:

BODIE: Bodie is really doing great. He's been off Nitric since last night and was just extubated about an hour ago - praise God!!! Please pray he is able to tolerate the extubation and they can lower his high-flow settings enough for him to eat.

When he is awake, he is MAD (thrashing around a lot). His head is a little swollen (he looks a bit like a marshmallow lol), so I'm sure some of the pain is due to the dreaded "Glenn headaches" (caused by changing pressures in the upper half of the body). They're trying to manage his pain, but with his history of "drug use" they're finding it hard to find a drug that actually works for him. Please pray they can figure that out.

If he tolerates the extubation, the plan is to wean him down on the hi-flow so we can start feeding him. Please pray that he tolerates the wean so that we can feed him later today or tomorrow!

TOWNES: Townes remains stable and is really holding his own. They're giving his body a rest today and leaving everything as-is while his body adjusts to its new pressures. Please pray that his body does some serious healing today so that he can get his chest closed tomorrow and start working toward recovering!

Thanks everyone for your kind thoughts and prayers - please keep them coming!
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Monday, September 13, 2010

Prayers for Townes

Please say some prayers for Bodie's dear friend Townes (21 months old) tonight. Townes had his Fontan today and the surgeon had to do a fair amount of arch re-construction. Townes is suffering from some serious post-op complications including bleeding. Please please please pray that the doctors can get his bleeding under control and regulation issues fixed. Pray for Townes' little body to keep fighting hard. Thank you!
Sent from my Verizon Wireless BlackBerry

Back in CTICU

Bodie is now back in the cticu, resting fairly comfortably. The general plan is to start Sildenafil immediately and start weaning the nitric today, with the hope of extubating tomorrow maybe. The upside of being intubated is that they can give him just about whatever gnarly pain med they want (b/c they don't have to worry about him being with it enough to breathe). Overall, he looks really good and the tone of his room is positive.

Thank you for your prayers. As with his 2 previous heart surgeries, the first 24-48 hours are critical, so PLEASE keep the prayers coming!

Townes is now in the OR and his surgery is underway. Please keep praying for him as well!
Sent from my Verizon Wireless BlackBerry

Update #3

Just talked to Bodie's surgeon. Apparently, Bodie's pulmonary beds were "twitchy," a problem Bodie had before his shunt revision (the new shunt they put in during his last surgery was so big it basically overrode the twitchiness). The surgeon seems to think he'll be intubated for a few hours and then hopefully switch him to a nasal cannula - but if our experience has taught us anything, it's that what actually happens in the cticu can be very different, so we'll see what happens. Please pray that we can get him off the vent this afternoon!
Sent from my Verizon Wireless BlackBerry

Update #2

Bodie still off bypass (yay!), but it looks like he'll be coming back on Nitric (boo). Don't really know details yet, but generally speaking, that means his lungs are not happy. Please keep praying!!!
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Update #1

Just heard that "surgery" part is over and Bodie just came off bypass! Praise God! Still have to wait for them to close his chest, stabilize him, etc., but definitely a good first report! Please keep the prayers coming!
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Here we go!

They took him back about 10 minutes ago. They did have to pry him out of my arms, but other than that, it was our easiest sendoff yet. Please pray for a smooth surgery!!!

Snapped this pic while they were doing pre-op stuff this morning.
Sent from my Verizon Wireless BlackBerry

Sunday, September 12, 2010

I DON'T want to...

As I am racing around the house today, doing laundry, cleaning, getting ready for my in-laws to come and stay with us for a week to help with Sierra (thank you, by the way!), paying bills, and basically doing any other activity to keep my mind occupied and not thinking about tomorrow, this phrase keeps running through my mind...

I DON'T WANT TO send my sweet innocent happy little boy into surgery again.
I DON'T WANT TO kiss him goodbye as the anesthesiologist wheels him down the hall behind doors I'm not allowed behind.
I DON'T WANT TO pace the halls of the CTICU Parent Pod waiting for an update, any update on how our little fighter is doing.
I DON'T WANT TO see our little man, again on a ventilator, with chest tubes and central lines.
I DON'T WANT TO wait for the results of hourly blood gasses to tell me whether our little man is continuing to beat the odds yet again.
I DON'T WANT TO look at his sweet little face full of the pain and pressure of the dreaded "Glenn Headaches."
I DON'T WANT TO leave my sweet little girl at home again for an indeterminate amount of time while I sit at Bodie's bedside.
I DON'T WANT TO have to choose between my children again.

So I stand, stomp my foot and say I DON'T WANT TO. I DON'T WANT TO. I DON'T WANT TO.

And then I realize I sound an awful lot like a temper-tantrum throwing 3 year old. (As luck would have it, I am very well versed in exactly what that sounds like these days!) And I am reminded that as Sierra brings her temper tantrums to me because she cannot understand why I am guiding her a certain way, I am bringing my temper tantrums to my heavenly father, because I cannot understand why he is guiding my family a certain way. God loves us with a perfect love that we, as humans, cannot even begin to fathom. We love Bodie with an imperfect love, but God loves us with an unbelievably perfect love. And I am reminded that when we decided last October to give our child life, we knew this path wouldn't be easy. God never promised us an easy journey, only that He would be with us every step of the way. THIS is the journey he has chosen for our child, for our family. And tomorrow's surgery is the next step in that journey. God has brought us to Children's and to Dr. Starnes - and we know tomorrow when we hand our child over again, God will also be in that operating room. Our task, as parents, is to walk this path with as much grace, dignity and trust in Him as we can muster. And I am reminded of our constant prayers when we first found out about Bodie's diagnosis.

"Lord, please use this child for your good. Give us peace and use this child's journey to honor you and bring others to you. Our greatest prayer is that you would be glorified through our lives and the life of this child."

As we stand on the precipice of the next step of this journey, we are again praying for peace and that God would be glorified through our son. Please join us in praying for both of those things tomorrow.

Saturday, September 11, 2010

Enfamil Premium, oh how we love thee

How do we love thee? Let me count the ways:

1. Gone are the periodic screaming fits where Bodie grabs his mouth and arches away 1oz into the feed.
2. My little crazy eating man is back, happily taking 4-5oz at most feeds.
3. Mr. Grumpypants who typically appears between the hours of 5pm and 8pm has been replaced by a significantly less grumpy Mr. Grumpypants.
4. Have I mentioned the fact that it's maybe 2/3 the price of the prior formula, Pregestimil? Oh, and I can get it at my local Walgreen's?

You may remember me posting about how Bodie has been having feeding issues on and off since we came home from the hospital. Initially, it coincided with teeth, so we chalked it up to teething. It really looked like teething (he would pull off the bottle and grab his mouth, screaming). But when he stopped doing it the week he was on breastmilk only, we started getting an inkling that something else was going on. So his pediatrician gave us a can of Enfamil Premium to try...and holy batman, he's a different kid!!! He hasn't thrown one fit and his general demeanor is sooooo much better. (He's always been a really happy baby, but his happy periods were definitely punctuated by horrible screaming fits - they're almost nonexistent now! He still has his fussy period in the evening, but it's nothing like it was previously.) PRAISE GOD!!! And, let's just say that everything appears to move much more quickly through his system now, so I'm guessing this formula just agrees with him a little better. Hoping that means we can start weaning him down on his Reglan (a med commonly given to hypoplasts to aid in stomach motility).

I know it's only been a few days on the new formula (he's still on primarily breastmilk - when I say formula, I'm referring to what we add to the breastmilk to increase his caloric intake), so I suppose it's too early to say definitively that it's our magic cure. But I can say for sure that it at the moment, it is REALLY agreeing with him - which takes a huge weight off of my shoulders! Thanks so much to all of you who have been praying that we figure out what was causing his to not want to eat!

Friday, September 10, 2010

Surgery Buddies

Next week is going to be a busy week in the heart community (especially our little heart community)! I'd like to ask for prayers not only for Bodie next week, but also for some sweet heart buddies we've met. Both of these sweet little HLHS heroes have big surgeries next week. Please pray for smooth surgeries and quick recoveries for all of these kids. Pray that they will all fly through their surgeries and be back home with their families in no time!

Townsend Hale:
(Bodie and Townes)

I think you all know Townes, our hero. We love Townes! Townes is having his Fontan (the 3rd of the 3-stage palliative surgeries used to treat HLHS) Monday morning, also at CHLA, also by Dr. Starnes! We were SO excited to know that Sara and Aaron will be up at CHLA right alongside us on Monday!!! In fact, I'm guessing Townes must be right behind Bodie on the surgery schedule as our call time is 7am and his is 8am. Definitely God's hand in this! For details about Townes, you can see more pictures and follow his journey at

Zoe Lihn:
We've gotten to know Zoe through Jacob's mom Kathy (I've asked for prayers for Jake on a few occassions - he's the little guy who had a really rough time after his Norwood but was out after his Glenn in less than a week). Zoe is having her pre-Glenn cardiac catheterization Monday and her Glenn Tuesday, Sept 15th. For details about Zoe, you can see more pictures and follow her journey at

Thank you prayer warriors!

Fasten your seatbelts folks, it's going to be a bumpy ride

In the world of CHD's and heart kids, as it often happens, a single phone call can change everything. I received one such phone call this afternoon, as I was picking Sierra up from school and strapping her into her carseat, talking about how we were going to Wendy's and then to Bodie's weekly cardiology appointment. It was the phone call I had been EAGERLY anticipating, but which literally made my heart stop. "Amy, this is Pam from Dr. Starnes office. He has a surgery cancellation if you want it, on Monday." After I caught my breath and made a quick call to Dusk (to confirm that yes, we were actually ready for this - as it turns out, we're totally not, but we took it anyway!) and Bodie's cardiologist (to make sure she agreed that the timing is good - she totally did), I called the surgeon's office back and said yes, we wanted it! I then spent about 20 minutes figuring out Sierra's school situation (a huge shout out to Del Rey Christian Children's Center for allowing us to change Sierra from mornings to full days (3 days a week) on the spot), then dropped her back off at school and raced up to Children's for all of Bodie's pre-op work.

He did great. They did his exam, bloodwork and a chest x-ray. The only time he got really upset was when she stuck him with the needle. Literally, 10 seconds later, he fell asleep and stayed that way the entire time she finished the blood draw! Then he socked out in his stroller:

I even had time to swing by the Blood Donor Center and make a donation for his surgery. For those of you who wanted to donate blood, it looks like there's not enough time due to the last minute rescheduling of his surgery. :-( But thank you so much for offering and I hope you'll do it for another child who needs blood as well!

So, there you have it. MONDAY. MONDAY, SEPTEMBER 13. MONDAY, SEPTEMBER 13, 2010. MONDAY, SEPTEMBER 13, 2010 IN THE MORNING. We don't know the exact time of surgery yet, but our "call time" is 7am, so my guess would be 9 or 10am. So, please, please, please keep storming the gates of Heaven with prayers for Bodie and our whole family over the weekend and next week, especially Monday.

Please pray specifically:
1. That Bodie stays as healthy as possible between now and Monday.
2. For wisdom for Bodie's surgeon.
3. For as smooth a surgery and uneventful a recovery as possible.
4. For grace and patience for our entire family, but most especially Sierra. The mechanics of our family are very finely balanced at the moment and she is doing WONDERFULLY. But we do worry that the major change of having him back in the hospital (and mommy away again) will be really hard on her. We keep trying to stress that it will only be temporary, but that's a hard concept for a 3 year old to grasp. Please pray she does ok through all of this.
5. Please also pray for Sierra, who had a rough run-in with our dining room table tonight and came out the loser, resulting in a trip to Urgent Care to get her eye looked at (that's right, because I didn't spend enough time in the hospital today!). All appears ok, but she will definitely have a shiner tomorrow. Please pray that no infection develops!

Tuesday, September 7, 2010

Just in case you've ever wondered

Just in case you've ever wondered what 1,500oz of frozen breastmilk looks like (yes, I'm sure this thought keeps many of you up at night), here you have it. (Sounds a lot more impressive than it actually looks, right? Especially considering it would last Bodie less than 2 months at the rate he plows through the stuff!) And of course, it's OCD organized, because, as most of you know, that's how I roll. Oh, and the fact that it's 1,500oz worth is courtesy of little man not being allowed to eat for way too much of his life so far. Stockpiling milk was one of the few good things that came out of those times!

With all of the things a heart mom deals with that are completely and totally out of her control, I just wanted to take a moment to appreciate one of the few things that is within my control, my ability to provide for my little guy. (Ok, with the help of a thickening agent and fortifier, but provide for him nonetheless.) It hasn't been easy - exclusively pumping is SO much harder than part-time pumping. There are many days that I literally say I'm going to pump today and then we'll see if I'm going to pump again tomorrow. But here I am, almost 7 months later, still chugging along. And I'm really proud of that. (And especially grateful since little man has decided he has a bone to pick with anything resembling formula!)

Speaking of the little man, please keep him in your prayers tomorrow. We have his 6 month well check with his pediatrician and his vaccinations, which are always worrisome. But it's really important that he get them done and out of the way before surgery. So he has to get them. :-( Please pray that all goes well and he doesn't have any adverse reactions!

Monday, September 6, 2010

Life's a Beach

Bodie finally got his first trip to the Beach this weekend! (Cannot believe it took us so long to take him, considering we're just a couple of miles from the beach, but we're just glad we finally got him there!). He had a great time...but don't be fooled into thinking it was a wonderful perfect beach trip. As beach trips go, Bodie was ok with it (he was basically in his carseat or my arms the entire time), but Sierra got all huffy and mad when Dusk tried to make her go into the water, and then she ended up having a pee accident and it got all over her legs, which were already scratched up from having played in the bushes earlier in the day while Dusk was trimming the hedges and let's just say that pee and scrapes don't go well together. So then she was a screaming mess (Is it just me or are 3 year olds SO much more dramatic than the rest of the human race?), so then we made her go into the cold ocean to clean her off and then she came back and got wet sand everywhere and wasn't too excited about that either. Ah, the wonders of the beach! All told, I think we were only there maybe an hour. But hey, it made for a memorable trip, right? (and of course she can't wait to go back!)

Here are some pics:
Man with the overbite ready to hit the beach
Sissie smiling before the whole "pee incident"
Huffing and refusing to go into the water
Finally heading into the water with daddy
All relaxed (again with the overbite!)
Love chubby baby feet

Please continue to pray for Bodie's eating/teething issues. What we thought was teething has returned with vengeance the last 2 days, at the exact same time we put him back on the high calorie formula fortifier. We're not sure whether it's reflux or him just not liking the formula, but it's making it REALLY difficult to get him to eat since he's screaming at me through most of the feeds (he doesn't seem to scream when it's just the breastmilk, but he doesn't grow nearly as well as when it's fortified, so we're kind of caught between a rock and a hard place). Please pray that we can work with his cardiologist to come up with a solution that works for Bodie.