Friday, April 30, 2010

Miracles Abound

This morning, for the first time in almost 2 months, I came in to see my sweet boy's face completely oxygen free! He is now completely on room air and has been satting 85-88 all day! I had been thinking in the back of my mind that it might be possible to bring him home not on oxygen this time, but I was scared to even say it out loud for fear of jinxing it. Praise God for this amazing miracle!!! How cute is he???

The biggest issue we're still dealing with at this point is the decision of whether to put a g-tube in vs. letting him continue to do thickened oral feeds. (In the picture, you can see an ng-tube in his nose - until they figure out what they're going to do with his feeds, they're feeding him through the ng tube.) We had a GI consult today where the doctor told us the tests they're planning to run next week to determine whether Bodie is indeed aspirating. God has given Bodie so MANY miracles in the past week, it feels greedy to ask for yet another one...but if you would please pray for one last miracle, I would really appreciate it. Please pray that the studies show NO aspiration and they let Bodie come back home on full nectar feeds. Given how much he likes to eat and how well he was doing with it, it would be great developmentally if they would continue to let him feed orally. Please, please pray for that!

Thank you for all of your continued prayers - we continue to be in awe of what we have seen God do through our little son this week.

And, in other "God news," at Sierra's well-child check today, the doctor asked her to identify different shapes and symbols on the eye chart. One of the symbols was a plus sign - Sierra looked at it for a second and then said "church!" (I think she thought it was a cross). I love it - she's already witnessing at 3 years old! :-)

Thursday, April 29, 2010

Sweet baby Bodie

Bodie had another great day today!!! He easily weaned down on his O2 to 2L of high-flow oxygen, which basically means he's ready to come off of it and go to the regular-flow nasal canula (what he came home on last time)! The plan is to let him rest overnight on the high-flow and then put him to regular 02 tomorrow morning. They started his Pedialyte feeds today and he did great with those as well (no signs of intolerance - yay!), so they've scheduled a GI consult for tomorrow to look at his reflux and check everything out before re-starting the breastmilk feeds. They also are weaning him off his last drip tonight (milrinone)! And, Bodie really had a wonderful day - he was just content and relaxed all day today, happy just to look around at us. I got to hold him for several hours today and he just slept in my arms. It really was amazing - he has always been such a fussypants, but now he's a pretty chill kid. Turns out what I was starting to chalk up to colic may have been that he just didn't feel so hot and he finally feels good! Praise God for that! As I told the doctors today "if I had known it would improve his demeanor so dramatically, I would have requested the BT shunt and pacemaker to begin with." :-)

It was really interesting today - we were talking to the critical care fellow who was in the room the night we almost lost Bodie. My mom asked her whether she saw "miracles" a lot in the unit (we thought she would say yes). Her response was "well, some kids don't do so well...and some do ok...but it's pretty rare that they fly through like Bodie did - especially with the kind of complications he had last week." She said she thought Bodie had some divine intervention. It was just really cool to hear a person in the medical profession say that!

A few prayer requests tonight:
1. That Bodie is able to come completely off oxygen soon.
2. Bodie has some "junkiness" in his chest, likely leftover from being on the vent. They're doing therapy and suctioning him to get rid of it, but it would be great if he could get rid of it on his own and not have to deal with it anymore. Pray that he can get rid of it.
3. That the GI study reveals such mild aspiration that Bodie can start back on his bottles really soon, with no need for a g-tube!

Thanks as always!

Wednesday, April 28, 2010

On the fast track

What? I'm on the fast track this time around? Are you serious???

It would appear that Bodie is indeed on the fast track this time around! He had an amazing day today. Today, he was extubated AND lost his remaining chest tubes and his foley catheter! What an answer to prayer!!! Last time, he was on the vent for 10 days - this time, 48 hours! Go Bodie! Right now he's on Vapotherm, which is a high flow nasal canula. The next step is to wean him down to a regular nasal canula - and, once he's on a low enough flow, they can start feeding him. The good news is that they weighed him and he's lost less than we thought in the past weeks - around 3 or 4 ounces.

Prayer requests for tonight and tomorrow:
1. Pray that they can wean him down from the high-flow to the regular nasal canula (and then completely off of it - we are really hopeful that he won't have to come home on oxygen this time!).
2. Pray that they can restart his feeds and he will tolerate them well.
3. Now that he is more stable, they are starting to think about the issue of whether he was micro-aspirating and that maybe that was what caused his downward spiral (they had expected his pulmonary hypertension to start to get better by now - because his has not, either that's just how he is, or something is exacerbating it, like micro-aspirations). If they determine that he is aspirating and that's what's contributing to his pulmonary hypertension, they will likely say that he has to have a g-tube. Because he LOVES to eat (and it's our best mechanism for soothing him when he's upset), I have been pretty adamant that I do NOT want them taking this route unless they are sure that he is indeed aspirating (rather than based on a theory alone). They are hoping to get GI in to look at him and maybe see if they can determine it conclusively - please pray that they find out that he is NOT aspirating -or if he is, it's not enough to warrant a g-tube!

Thanks as always, faithful prayer warriors!

Tuesday, April 27, 2010

He just keeps fighting on!

Bodie had another great day! For I think the first time ever, his sats consistently stayed in the 80's all day! Clearly the combination of the new shunt and the pacemaker really works for him! Praise God!!! They were actually going to extubate him today, but he was breathing a little too fast, so they decided to wait and let him rest overnight and then plan to extubate tomorrow. Given that it took him 10 days to get off the vent after his first surgery, it is nothing short of a miracle that they're already taking about extubating him the day after his second surgery! It seems a little surreal, to be honest. :-) But Bodie is really doing well and looks so good.

Prayer requests for tonight and tomorrow:
1. First, please just praise God for answering all of your prayer requests during this past week and healing Bodie so quickly! We worship an awesome God indeed.
2. Please pray that his breathing slows down so that he's able to be extubated tomorrow.
3. Please pray that they're able to take out his remaining chest tubes tomorrow (they already took 1 out - he still has 2 remaining) - they're pretty painful from what I understand, so I know he'll be MUCH more comfortable once they take them out.
4. Please pray that they restart his feeds soon and that he tolerates them so that he's back up to full feeds soon. He's lost a lot of weight since he hasn't eaten in over a week at this point - pray that we can start fattening him up again really really soon!


Monday, April 26, 2010

Our little miracle boy

Bodie had a GREAT day! He just keeps getting better and better. He surprised all of the doctors and nurses today by responding really well to surgery!!! His little anatomy seems to really like both the pacemaking system (they set it at 110bpm) and his new shunt. He's been satting in the mid to high 80's since he came back from surgery and his color is fantastic (they tell me it will only get better!)! They're weaning down on the oxygen and cannot believe how low his oxygen requirement is. Everyone says "well, his problem must have been that the shunt wasn't working for him and he needed a higher heart rate" - but we know the truth - that God worked a miracle in our little boy in the past week. Praise God for listening to your (and our) petitions and saving our son! I think we'd be hard pressed to really find a medical explanation for the unbelievable turnaround we saw in him this week. What a wonderful miracle for us!!! Please continue to pray that he heals in the coming days, comes off the vent really soon, and comes home soon after that! Thank you so much for your continued prayer for Bodie!!!

Bodie is back!

We just saw him for a second, but we hear he's doing GREAT! They gave him a new shunt, took down the old shunt and put in a pacemaker. He did NOT need to go on bypass and his chest is closed! Praise praise praise God!!! Surgeon says pacemaker and shunt appear to be working well for him - he's now off the Nitric and on less meds than he was on going into surgery! I'm sure the next 24 hours or so will be dicey as Bodie tends to not respond too well after procedures, so please keep praying! Thank you so much for your prayers - they got Bodie through this morning with flying colors!!!
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And so it begins...again

They just took Bodie back for surgery. Please please pray all goes well!!!
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Sunday, April 25, 2010

Prayers for Bodie's surgery

Bodie's surgery is second on the schedule tomorrow morning, which means he will probably go back around 8 or so. They expect the surgery to last a few hours (although placing the shunt and the wires for the pacemaker should go really quickly, apparently, it takes some time to get the pacemaker set to the right settings). Given how fragile he is at the moment (and his reaction to the cath, a relatively noninvasive procedure), he needs all the prayers he can get for tomorrow. Specifically, please pray for the following:

1. That Bodie remains stable tonight and going into surgery tomorrow.
2. For wisdom and precision for the doctors tomorrow.
3. That the procedure goes as quickly as possible and Bodie remains stable during surgery.
4. That Bodie will not need to go on the heart/lung bypass machine (typically, kids having these procedures done do not, and it would be best for Bodie not to have to, but well, Bodie is Bodie, so there's a chance he'll need to).
5. Pray that they'll be able to close Bodie's chest before bringing him back (again, typically, they can close the chest after these types of procedures, but, well, Bodie is Bodie, so anything is possible) - but it would certainly speed up his recovery if he doesn't have to come back with his chest open.
6. Pray for Dusk and I, for peace, as we again put our little boy into the hands of the Great Physician and trust His will to be done.

Thanks - and we'll update you all as soon as we have any news!

Dusk & Amy

P.S. Here are a few pics I took the morning we took him into the hospital:

Saturday, April 24, 2010

Happy 3rd Birthday Sierra!

The big present - her own "cell phone" (that somehow she's already managed to lose 2 hours after the party)

Sierra and her really good friend Isabella
The only thing better than one Cookie Monster cake is two (thank you teacher JuJu!!!)
My sweet big girl turned 3 today - I can hardly believe how fast the time has flown! My heart breaks a little for her that we can't give her a normal birthday, but we did the best we could. Since Bodie has been stable, we stayed away from the hospital all day today and just focused on Sierra. Big shout-outs to our friends Nairi and Michael, who sat with Bodie at the hospital today so that we could feel a bit more comfortable being at home!
We had planned to do a very small party for Sierra, with only 3 friends that she plays with every day at school anyway, since we didn't want to expose Bodie to any new germs. By the time we realized there was no way Bodie was going to home on Saturday, we just didn't have our act together enough to invite anyone else. So it ended up staying small - and it was really nice. Sierra had SO much fun with her little friends!
And in Bodie news, he's still looking good! Nice and stable! They tried to start his breastmilk feeds last night (he had been on TPN (an iv nutrition) and pedialite), but he didn't take to it very well, so they stopped his feeds late last night (he hasn't had an issue with feed intolerance in the past, but he's had a lot going on in the past few days, so we're hoping that's all it is). They put him on Reglan (a drug to help move food through the gut basically) and are going to try the breastmilk feeds again tonight. Hopefully, he'll tolerate it a bit better tonight. Other than that, all is the same. He's on a bit of nitric oxide (they had weaned him off of it yesterday, but then he started desatting a couple of hours later, so they put him back on - it's actually not the worst thing in the world since it tells us that his issues are not solely heart-rate related, so answers the question of whether he can get by with just a pacemaker or truly needs the new shunt - looks like he does in fact need the shunt).

Prayer requests for the next 36 hours or so:
1. Pray that Bodie tolerates his breastmilk so that he can continue to get some calories and stimulate his gut until surgery (he will be off of it for a few days after surgery, so it'd be nice to get some in now).
2. Pray that Bodie continues to remain stable and his sats stay nice and high and well within his range.

Amy :-)

Thursday, April 22, 2010

Breakthrough moments

First of all, Bodie is contining to improve, praise God! Thank you so much for all of your sweet emails and posts - so sorry I haven't had a moment until now to update. I was waiting to process all of the information we were given so that I could give a complete update (and this one is long - sorry!). He is now completely off the epi (a HUGE step in his recovery considering how dependent he was on it just a couple of days ago) and has come down considerably on the 02. They're no longer paralyzing him, but just putting him on a painkiller/sedative instead. Yay!!!

We've definitely had some big breakthrough moments in the last 24 hours. The biggest is that we're not just dealing with Hypoplastic Left Heart Syndrome here. After Bodie had such a horrendous day on Tuesday and left all the doctors scratching their heads (we've had 3 separate doctors tell us they've never had a patient with ALL of these things at once), the electrophsyiologist sat down and really reviewed the file. Nothing seemed to fit into a typical HLHS kiddo. He finally reached the conclusion that, in addition to HLHS, Bodie is very likely dealing with a genetic issue of some sort causing electrical current issues in his heart (heart arrythmias, a ridiculously low heart rate, etc.). Since Dusk has a really low resting heart rate and a left ventricle issue, they're thinking that Bodie may have inherited something genetically that is causing these other issues for him. They didn't really think about it before since literally, the chance of a kid having both HLHS AND a completely unrelated rare genetic issue affecting the heart is like 1 in 5 million or so. Yep, looks like Bodie may have hit the crappy jackpot. Crazy stuff. Anyway, it's sort of an academic question since the treatment of his low heart rate and arrythmias is the same regardless of whether they have a genetic causation or not, but it's interesting nonetheless and I think we're going to start genetic testing specifically of Dusk's cardiac condition. If it comes up with anything, then we will also have Bodie (and also possibly Sierra) tested.

The other big breakthrough has been that, while in the past Bodie was able to tolerate the arrythmias and lower resting heartrates, he can no longer tolerate them. (Just as a background, when he was in the hospital, his resting heartrate was in the 80's (but they opted not to treat it since it didn't seem to bother him), the first week home from the hospital it dropped to the 70's and then to the 60's and by the time we were admitted to the ER, it was down in the 50's - crazy low for a baby, let alone a single ventricle kid). Since his heart function is still great but his heartrate has been dropping, they're leaning toward thinking it's a genetic thing. And Bodie's body definitely does NOT like it anymore. Since he's been on a pacer and then on a drug that speeds up the heartrate, he has substantially improved. He really had a miraculous recovery over the past 2 days since they brought his heartrate up. Bringing his heartrate up brings his pressures up, which improves everything overall for him. So there's really no question that he's a great candidate for a pacemaker.

They've also realized that he just isn't getting enough bloodflow to his lungs. Although his lower heartrates haven't helped his situation any, they don't think it's the only contributing factor to why he has always struggled with oxygen saturations. They believe his shunt, although working great, just isn't getting the blood flow that he needs to his lungs. There is a different kind of shunt they can put in called a BT shunt (he currently has a sano shunt) which allows for a greater bloodflow to the lungs. They want to go in and put a BT shunt in to help Bodie out (they're not sure what they'll do with the sano shunt - they may narrow it or take it out entirely at the time, depending on how Bodie responds). The BT shunts typically last a bit longer than the sano shunts (kids with sano shunts tend to need their 2nd surgeries (the Glenn) between 4-6 months, sometimes a bit earlier, while kids with BT shunts can typically make it 6-9 months). The Glenn surgery significantly increases bloodflow to the lungs, so the lungs have to be mature enough to handle that. Since Bodie still struggles with pulmonary hypertension and somewhat immature lungs, he would not be a good candidate for an early Glenn. So, switching him to a BT shunt gives the short-term advantage of helping get a little more blood flow to his lungs while buying him time for his lungs to mature enough and the pulmonary hypertension to settle down enough for him to be ready for the Glenn.

SO...they're planning to let him recover for a few more days and then take him in for surgery to put in both a BT shunt and a pacemaker on Monday. Generally speaking, these 2 procedures are nowhere near as risky as his Norwood surgery was. However, the fragile condition he's in as a result of everything he's gone through over the past 2 days makes the surgery riskier for him. So, he needs lot of prayer over the next few days. He needs prayer that his body continues to heal and at lightning speed so that he is as strong as possible for his surgery on Monday. Both the BT shunt and the pacemaker will really give Bodie the best shot possible at making it to the Glenn in good shape, so we really need to do the surgery. We didn't expect to be putting our son back into God's hands for another open heart surgery just yet, but, well, God had other plans. Please pray that we can continue to place our faith in Him and have peace that all will be well.

Thank you ALL so much for all of your prayers. I know for a fact that's the only reason Bodie is alive today. Several things happened over the course of the past few days that could only have been God's hand:
1. Me taking Bodie to the ER. He really wasn't in bad shape at all and it was just very minor changes in him that made me take him. It is clear to us now that had I not taken him in when I did, he would not have made it.
2. The doctor deciding to try to pace Bodie on Tuesday night. On Tuesday night, Bodie started spiraling downward very quickly. I was in the room as his pressures, sats and heartrate were dropping. They kept pushing epi and he would stabilize for about 5 minutes and then start to drop again. They had him maxed out on the epi and were still pushing additional boluses and fluid and it was clear nothing was working. They really didn't know if Bodie was going to make it at that point. Dr. Rivera, the attending on that night, walked in and suggested that perhaps we try pacing Bodie. No one actually expected it to work, but it did, and very quickly. Given that the entire team had been trying to stabilize Bodie all day and that thought hadn't occured to any of them, but just happened to occur to Dr. Rivera, can be nothing short of God's hand on her mind. God used Dr. Rivera to save Bodie's life Tuesday night - of that, there can be no doubt.
3. The electrophsyiologist piecing everything together and realizing that something else besides HLHS was going on. Had he not figured this out, they would not have been able to come up with the plan that they have. God was clearly working to enable him to come up with that kind of solution.
All of these things have only happened because you have all been petitioning on Bodie's behalf. Please do not stop - his fight is clear from over. We know God has big plans for him - please continue to pray that we get to see those plans!!!

In Him,

Wednesday, April 21, 2010

Wed mid-day update

Bodie seems to have taken a turn for the better! He was put on a new pacing med last night and really seems to be responding well to it. They were worried about blood flow to his brain, so ordered a cranial ultrasound yesterday. Just got the results back and it was normal!!! Praise God! Prayers are definitely working - keep em coming! He is nowhere near out of the woods and is still extremely critical and fragile, but at least seems to be moving in the right direction, albeit slowly!
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Wed am update

They stabilized Bodie enough to get him through the night, but they have paralyzed him and he's on a LOT of support - and they don't know why. Cardiologists and surgeons are conferencing on him today to "try to see what else we can do." Prognosis is grim and Bodie is clearly fighting for his life. Please please ask God for a miracle!!!
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Tuesday, April 20, 2010

Urgent prayer request

Bodie has had an extremely difficult evening. He may not make it through the night. Please, please, please pray for a miracle for our sweet boy!!!
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Urgent prayer request

Bodie has had an extremely difficult evening. He may not make it through the night. Please, please, please pray for a miracle for our sweet boy!!!
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Still fighting

Bodie is still hanging in there, but honestly is having a really rough day. He coded again once he got back to his room and they've been having a hard time stabilizing him. His pressures have been all over the place and his sats have been low. They had to put him on a paralytic and that seems to have helped a bit. He has been relatively stable for the last couple of hours, so let's hope he stays that way.

Everyone seems to think this is just a great big attack of pulmonary hypertension. What is puzzling to me is how quickly it came on. He's always struggled with hypertension but never to the point of it literally being life-threatening. Something must have triggered it, but what exactly is the big question. They think it's most likely what they call "microscopic aspirations", which is where someone aspirates their feedings just enough into the lungs to trigger hypertension but not enough to show up on a chest x-ray. That may be the case (I've asked them to see if there's a test they can run to determine this rather than saying he has to have a feeding tube solely based on speculation), but I can't help but think about the fact that he got his vaccinations this week and wonder whether that may have triggered this whole thing...

Anyway, he's still fighting what appears to be an uphill battle at the moment. Please please pray they can figure this out and his little body will keep fighting hard...

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Cath results

The doctor from the cath lab just came out. Bodie had kind of a rough time before they even started. He coded on the table as they were getting ready to start! The good news is that they're prepared for that kind of stuff and they stabilized him pretty quickly.

The procedure itself went fine. They were able to determine that the heart looks great and that the shunt is nice and open. Good news is that means no surgery. Bad news is they're still not sure what's wrong. They think it is all related to his lungs and his restricted ASD in utero (hlhs kids need a good size Atrial Septal Defect in order for the heart to function; Bodie did have a good size ASD in utero, but also had some extra tissue in the right ventricle lying across the ASD, creating the effect of a mildly restricted ASD). The thought is that the restricted ASD just didn't allow his lungs to fully develop, so he'll need some extra help (via 02 and meds) as that development happens now.

The hard part is that we don't know how long that will take or why Bodie suddenly went downhill as quickly as he did. He's been having a LOT of heart arrythmias and they think that may be related. He's always had those, but they think maybe it finally caught up with him.

So we don't really have a plan yet. They put him back on the vent since he coded, but hopefully he won't have to be on that too long. I haven't seen him yet and am trying to brace myself for seeing him back on the vent.

Please pray for his little body to fight on, for wisdom for the doctors and peace for Dusk and I in all of this. Will update when I know more.

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Monday, April 19, 2010

Please keep praying

Bodie was up and down all day today but now seems to have stabilized pretty well, albeit on a lot of supplemental oxygen. He responded well to the transfusion and that did help his sats thankfully. At this point, they have exhausted most of their theories on why he is desatting so badly. They had initially thought it might be his good old pulmonary hypertension, but he didn't respond as well as expected to the nitric oxide they put him on, so they ruled that out. Then, they thought maybe it was an infection of some sort, but all of the labs that have come back so far have been negative (they are still waiting on the respiratory lab, but since he's not showing any symptoms of a cold or upper respiratory infection, they're not expecting anything on that one).

Their only other theory (at least that they've mentioned at this point) is that his shunt is narrowing at some point. They did an echo last night and his function was still great (his echos have always looked good as far as heart function is concerned), and although the shunt itself looks good on the echo, they did notice that his blood flow velocity was higher than expected through the shunt, which apparently can be a sign of it narrowing. The echo can only show so much; the only way to confirm this is with a cardiac catheterization. So, they have him scheduled for a cardiac catheterization tomorrow morning at 7:30am. If you're not familiar with the procedure, they'll insert a catheter into a vein in his groin and lead it up into the heart and then inject a dye into the heart and lung area so that can map everything out and get a true look at blood flow and pressures in the heart and pulmonary arteries. Bodie will be knocked out for the procedure. Although it is nowhere near the scope of open heart surgery, it is still an invasive procedure that's not without risk. So, we're not thrilled at the prospect of it. However, Bodie has been battling desatting issues for so long and no one could ever come up with an adequate explanation, so it's kind of a relief that they're doing a cath and we'll (hopefully) get some answers finally. Caths generally do provide a lot of answers.

Bodie has been a real trooper through all of this. Even though he hasn't eaten in over 24 hours now, he was still content to just sleep in my arms all day and give me lots of smiles (which, yes, makes me realize that yes, maybe the kid actually can go more than 10 minutes without eating!). He's still hanging in there, thankfully.

So, we definitely have specific prayer requests tonight:
1. Pray that Bodie continues to remain stable tonight and gets his sats up high enough that they can start weaning his oxygen down.
2. Pray that there are no complications during the cath tomorrow.
3. Pray that they find a cause for his desats during the cath.
4. Pray that what they find can be fixed right there in the cath lab (if there is a narrowing of the shunt, depending on where it is, they may be able to put in a balloon or a stint right there in the cath lab; otherwise we may be looking at surgery again - really trying hard not to think about that possibility at the moment).
5. Pray that Dusk, Sierra and I maintain our sanity amidst all of this unknown. Mostly pray that we just remember to be looking toward God and reliant on His hand and His plan for all of this.

Thank you prayer warriors!

11am update

Bodie is technically stable (praise God!) But is on a LOT of oxygen support. They still don't know what's wrong - they have theories but they just don't know yet. They're giving him a transfusion today to see if that helps. Please pray that they figure it out quickly so that they can lower his oxygen and start feeding him again!
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Sunday, April 18, 2010

Please pray for Bodie

Please pray for Bodie. He was acting a little lethargic this morning and not eating quite as quickly as he usually does. Since the doctors have impressed upon us that you can't take chances with these kids, we brought him to the ER. While there, he started desatting really badly. He's now been readmitted to the CTICU and is not in good shape. They can't figure out why he's desatting. Please please please pray hard for Bodie.
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Wednesday, April 14, 2010

Another great doctor's appointment

How did my appointment go?

Why, it went great, thanks for asking!
Bodie had his 2 month check-up today with his pediatrician and did great! He weighed in at a whopping 9 pounds even, which means he's gained almost a pound since we brought him home from the hospital 2 weeks ago! YAY!!! He gained a bit in length as well and is now 22 3/4in (so he's in the 8th percentile for weight and 49th percentile for length). We are so proud of how well he's doing, considering how no one knew whether he could actually do well enough on the thickened feeds to actually gain weight (as they explained to us in the hospital, the g-tube was only postponed, not necessarily canceled). So, it's been a huge sigh of relief to see how well he's growing! He also got his shots and did fantastic - cried, but settled down within a few seconds after, of course, getting the bottle in his mouth! LOL...we're watching him very carefully, and have him on Tylenol just in case, but so far, he doesn't seem to have any adverse reactions (just more tired and a bit fussier than usual, which is pretty much how Sierra was as well).

Monday, April 12, 2010

Some new pics

No real update here (no news is good news, right?), so I thought I would just take a second to post some new pics of Bodie (8 weeks old tomorrow)! He is so much more smiley these days - it's so fun to try and make him smile!

The kid is being so much less stingy with his smiles these days - I LOVE it!
ALWAYS pulling out his nasal canula, even in his sleep...
Soooo tired... food...

Friday, April 9, 2010

Good news on all fronts

Bodie had his abdominal ultrasound today, and other than giving the tech an earful about how he didn't want to be touched and he was starving, he did great! The really good news is that it came back completely normal! Apparently he has a little "sludge" in his gall bladder, which may have been what the ER docs were feeling, but no masses of any kind! Praise God!!!! Thank you so much for all of your prayers! Please just keep praying for Bodie's health in general - and for mommy's nerves, which are kind of frazzled at the moment (the constant worrying for 8 weeks now is starting to take its toll - and I need to daily remind myself to just give it to God and remember that since He's in control, we don't have to be).

On other fronts, Bodie's old roomie Isaac is going home Monday!!! What a long haul the little guy has had, and he's really going home in just a couple of days now! Talk about a HUGE answer to prayer. Please keep him in your prayers over the next few days, that his feeds increase so that he doesn't need his NG tube for very long - and that his lungs mature more so that he doesn't need the supplemental oxygen anymore.

A lot of you have asked how you can help, and so many of you have responded by providing meals to us over the last 2 months - thank you, thank you, thank you! Because we're still pretty overwhelmed at transitioning from 1 kids to 2, particularly with a #2 who not only has special medical needs and can't be allowed to get too worked up, but also appears to be a crankypants in general, we've extended our meal rotation for 2 more weeks for anyone else who would like to help. Please check out our meal calendar at

Wednesday, April 7, 2010

This kid CAN EAT!

Man oh man can Bodie eat! Our discharge instructions were for him to eat at least 55-60cc's (2oz) every 2-3 hours. He's already up to 90-100cc's (3oz) every 2 hours! I do fear we've created an emotional eater. ;-) Every time he's awake, he's looking for something to eat - it's so funny! (It's mostly funny because it's pretty rare for a single ventricle kid to like to eat a lot to begin with (it's probably the biggest challenge with single ventricle kids), let alone when they have to eat thickened substances.) But Bodie's definitely the anomaly - he absolutely loves to eat. He's happiest with the bottle in his mouth! And when he's hungry, everyone hears about it (well, as much as everyone can hear considering he only has one working vocal chord)! Just like Sierra, he snorts when he's mad and hungry. And his eating is showing - at his pediatrician's appointment today, he had gained a whopping 9oz since his appointment just a week ago! Go Bodie!!! What an answer to prayer!

Thanks for all of your prayers for Sierra - she is doing much better (fever lasted less than 24 hours, thankfully - and Bodie hasn't caught it yet!

We haven't heard yet about the potential abdominal mass - we have an ultrasound scheduled for Friday morning. Please keep praying that the ultrasound reveals no mass.

Thank you prayer warriors!

Saturday, April 3, 2010

Family outings

What a week we've had! So sorry I haven't had time to post, but life has literally been a whirlwind! Thank goodness my mom is back for a week to help out, so I have a second to update the blog! :-)

We're quickly discovering how unpredictible life with a single ventricle child can be. On Wednesday night, Bodie decided he missed the doctors and nurses at CHLA so much that he would lower his heart rate such that we'd have to end back up in the ER there. Babies have higher resting heart rates than adults, and single ventricle kids like Bodie tend to have higher than average resting heart rates (140 on up). Bodie, by contrast, stumped all the doctors and nurses by having a resting heart rate in the hospital of 100 or so. Near the end of his stay, he would hover in the mid-80's when he was in a deep sleep, each new nurse would freak out, and then realize that was his norm and leave him alone. Well, on Wednesday night, his heart rate was hanging out in the low-70's (even dipping into the 60's), so after much debate, we decided to call the on-call doc from the CT surgery department. After lecturing me for having an at-home monitor (yes, of course, THAT'S the time to have that discussion), she told me to bring him into the ER just to have him checked out. We took him in, and SPENT ALL NIGHT IN THE ER (no exaggeration - we got there at 11:30 and were not discharged until 7:30 the next morning!). One of the worst nights ever! Good news is that cardiac-wise, all looks good! Looks like he just hangs out low when he's in a really deep sleep (maybe he just couldn't sleep quite as well in the hospital as he can at home). Not so good news is that, in doing a work-up on Bodie, they discovered what they think may be an abdominal mass (they're not sure - it may just be his kidney, but they want an ultrasound to make sure - we're hoping to have that done early this week).

He also had his first appointment with Dr. Kim, our awesome cardiologist! (Well, his first appointment postnatally, as I saw lots of her during the pregnancy.) He did great! His echo looked good - good heart function, shunt still looks good, etc. His sats were good as well. What a relief to have such a good appointment! Bodie had gained weight as well - he's now up to 8lb6.5oz, and 22in, so he's growing well (9.5oz and 1.5in since birth). YAY!!!

In other fun news, we took our first family trip to the park (figured we could keep Bodie covered, so no one would breathe on him and spread germs, but still could let Sierra have fun). Here are some pics:

Proud big sissie:

Happy Family:

Big sissie on the slide:

Bodie watching the action from the sidelines:

Prayer requests for today:
1. Please pray for both Sierra and Bodie. Sierra has caught a nasty bug of some sort and has been running a fever, had diarhea and threw up last night. Please pray that it passes quickly and pray that Bodie doesn't catch it! Fluid and electrolyte balances are really precarious for single-ventricle kids as it is, and even a simple cold or flu can be enough to reduce heart function in these kids. Please, please pray that Bodie doesn't catch it!
2. Please continue to pray for Bodie's buddy Isaac. They are increasing his oral feeds, but he's having some difficulty keeping them down. Please pray his feedings improve and that his lungs improve as well! More than anything, pray that he and his mama get out of the hospital really really soon! Here are a couple of pics we took of our "forever friends" Isaac and his awesome mama Cindy (taken the night of Bodie's discharge - both boys just happened to have the same shirt):