Sweet home Westchester

It's official! We are now a family of 4 under 1 roof! Bodie was officially discharged yesterday!!! THANK YOU ALL SO MUCH FOR YOUR PRAYERS - WITHOUT THEM, THIS WOULD NEVER HAVE HAPPENED!

So sorry I am only just now getting to the blog to post about it - it's been a whirlwhind. We finally left the hospital around 9:30 last night (a big shout out to our friends Valerie and Rik Loyola for taking in Sierra at a moment's notice so we could be at the hospital - it takes a true friend to take a 2-year old for an indeterminate amount of time!) Today has been all about settling in, feeding Bodie and mixing milk bottles and medicines. It's taking me a while (all of the medicines have to be measured and thickened (he's currently on 6 of them - it took me 30 minutes to prep them tonight!) and his bottles are pumped breastmilk fortified with a high calorie formula and thickened), but I'm sure I'll get the hang of it sooner or later! I have a very detailed schedule, since they all are given at different times. Fun stuff! Anyway, that's why I haven't had a second to post yet!

It feels totally surreal to actually be home, but we are! Bodie came home on oxygen, but it's not as bad as I had imagined - we have a concentrator in the office and the company gave us a 25 foot tube, so we can easily move Bodie through the house. Not quite no tubes and wires, but as close as we can get! (Then, we have tanks of 02 for when we go out.) No idea how long Bodie will be on oxygen - the hope is that his lungs will strengthen on their own and we'll be able to wean him from the oxygen before the 2nd surgery.

Bodie is really doing great, considering. We have seen a complete change in his personality since coming home. At the hospital, he was known as the high maintenance kid, throwing a lot of fits and really hard to calm down (he kept his nurses on their toes! By the end, he was known as the kid you didn't wake up to do vitals unless you had a bottle ready for him!), but at home he's totally relaxed and happy. Loves to watch Sierra and sleep against me. Being home definitely works for him!

Speaking of Sierra, she is absolutely over the moon to have "Baby Bodie" home! She is always rushing to help bring a bottle, a pacifier or a diaper (regardless of whether he actually needs said item). She helped me give him a bath today and had so much fun! We're constantly trying to keep her from inadvertently hurting him, but I think that goes with the territory of having a newborn and a toddler. :-)

Lots more information to post later about what we have to look forward to in the coming months, but I wanted to post some pics of Bodie's first 24 hours at home.

Daddy, can you please sing some more? I love it!

Dear Jesus, please let me stay out of the hospital and home with mommy, daddy and Sierra!

Victory over the hospital!!! My bassinet is so much nicer than the hospital cribs...

Big sissie love


Bodie's not out of the woods yet (approximately 15% of kids who make it out of the hospital don't survive until the 2nd surgery - more about that in another post, since this is a celebration post!), so he needs your prayer as much as ever. Here are some specific prayer requests this week:
1. Pray that Bodie continues to eat well and thrive!
2. Bodie has lots of doctor's appts coming up (a well-child check with his pediatrician tomorrow and a follow-up hospital visit Friday) - pray that all appointments go well!
3. Between pumping, prepping and administering meds and bottles, I'm a little overwhelmed at the moment. Pray that we find a routine soon, so our house doesn't keep looking like a tornado ripped through it!
4. Pray for Bodie's roommate, Isaac. I miss both Isaac and his mom Cindy so much! They don't have a discharge date for Isaac yet and he has some lingering complications they're working out - pray for wisdom for the doctors and healing for Isaac's body, especially his little lungs! And pray for Cindy, who is so far from her three boys.
5. Please continue to pray for Baby Jacob, who, in addition to complications with his lungs, has contracted 2 bacterial infections this week, delaying his first surgery. Please pray for his little body to fight hard so he can have his surgery soon!

Blowing this joint

I'm not sure I should even dare to write this and tempt fate, but...word is, discharge is in our not-so-distant future! The surgeon decided that, because he is eating so well, a g-tube is definitely not needed for now!!! YAY! In light of, that, they're starting to talk about sending us home. PRAISE GOD!!!

We still have a few hurdles to cross before discharge happens and would appreciate your prayers to help this happen:
1. The insurance company has to approve the Sedenifil prescription (it's a drug to treat pulmonary hypertension, but because it's also known as viagra, the insurance company tends to challenge it a bit LOL).
2. They need to get home oxygen set up for us.
3. Bodie's cardiologist (Dr. Kim, the one I saw my entire pregnancy) needs to be brought into the picture and confirm that she's ok with him going home on 1L of oxygen (they typically don't release these kind of kids on such high amounts of 02 apparently) - there's a chance she could say she wants them to do a cardiac catheterization here at the hospital first. If so, that would delay our discharge for sure.
4. Although Bodie loves to eat and is eating like a horse, he's not gaining weight and that's a big issue for cardiac patients - they're looking at increasing the amount he's allowed to eat as well as running a caloric test on my breastmilk to see whether they need to fortify with a higher calorie formula). Pray that they figure it out and he starts gaining quickly!

I would also like to ask for specific prayers for the following heart kiddos:
1. Isaac, Bodie's roomie - he is struggling with oxygen saturation levels as well and they can't figure out why. Please pray that his lungs would heal and the doctors would be as stumped by his progress as they were by the cause of the oxygen requirements to begin with!
2. Jacob, a sweet baby boy born Tuesday with HLHS. He is having a particularly rough start, as they discovered after birth that the HLHS had done a number on both his lungs and kidneys in utero. They're fighting a lot of complications preventing them from even getting to his Norwood surgery at this point. He has already been through such much - please pray that he continues to be a fighter and that he can get to surgery soon! Pray also for his mom Kathy as she deals with all of this all while recovering from a c-section.

Thanks as always for your prayers and good thoughts!
Love,
Dusk & Amy

Stumping them all

Bodie's favorite roomie, Isaac, got Bodie this bib. It could not have more perfectly described our Bodie. :) He is giving everyone a run for their money around here!

In my last post, I said they had cancelled Bodie's g-tube because he was taking full nectar feeds orally. Then, on Monday, they decided no, the surgeon wasn't comfortable with that since hypoplasts are just so fragile. (If Bodie misses 2 feedings, he'll be back in the hospital, so not having another way to get food and meds in him is problematic - all it would take is a cold or fussiness (nectar feeds take a lot more work to get down, so it wouldn't take much for him to not want to have to work and take the bottle).) So they were putting him back on the schedule for the g-tube and we were totally fine with it as a prophylactic measure.

Then, the cardiac team and nurse practitioner happened to be here when Bodie was feeding (the OT was here at the time as well) and everyone was completely amazed at how well he did (he finishes his bottles typically in about 10 minutes, well within the 20 minutes he's allowed, and he appears to be in NO distress - in fact, he seems happiest when eating!). So then they were stumped, trying to figure out, if they do put the g-tube in, how do they decide how much we are allowed to give him orally? They can't put him on a time limit like they would normally do, since this kid pounds it back so darn quickly - which means we'd be pulling him off the bottle well before he was ready, which would just piss him off. So at that point, the g-tube would just be a prophylactic measure - and they just don't know if they're comfortable putting a fragile kid through a surgery like this as a precautionary measure only (as one of the cardiologists said, "this is major surgery - it's not like getting your ears pierced.")

So, now almost everyone is in agreement that he should go home on oral nectar feeds on kind of a test basis for a couple of weeks - if he can't gain weight or keep up with his feedings, then they'll put him on the schedule for the g-tube (or put him on the schedule later on if he just can't keep up with his feeds as they increase). But the surgeon still hasn't said that's ok - and since he runs this program and knows this condition better than anyone here, his opinion is obviously the most important one (even if given the option, we wouldn't be remotely comfortable bringing him home on oral feedings alone if the surgeon wasn't on board with it). The surgeon is at the hospital tomorrow, so I think they're going to try and get him up to look at Bodie and watch him eat to get his opinion.

For the time being, we are in a holding pattern - Bodie is still getting full feeds and they're moved him to an "ad lib" feeding schedule, meaning he eats when he's hungry - usually 2 hours or so between feedings during the day and we can let him go up to 4 hours between feedings at night!

As for his sat issues, they still can't figure it out - at this point, they're chalking it up to pulmonary hypertension and planning on sending us home on oxygen, with the hope that we can wean him off of it as his lungs get stronger and he gets bigger (not ideal, but hey, at least it will get us home!). Speaking of home, we still don't know when that will be yet. If he does get the g-tube, that will be scheduled for early next week, and then we can expect to be here maybe another week or so getting feeding issues settled. If he doesn't get the g-tube, we should, God willing, be home sooner than that!

Prayer requests for today:
1. Pray that Bodie starts gaining more weight from his oral feeds - I think we'll all feel a lot more comfortable when that happens!
2. Pray for wisdom for his doctors in determining whether or not he will need a g-tube. We want what's best for Bodie, so we'll rely on what the doctors have to say - pray that God would guide them.
3. Pray for continued improvement in his oxygen saturation levels - taking home a kid whose sats are all over the place is a really scary thought for Dusk and I!

And, of course, it wouldn't be a Bodie update without new pics (especially funny sleeping pics!):

God's hand on our son

Wow - we have definitely witnessed God's hand on our son in the last 48 hours. In my last post, I mentioned that Bodie was doing well on his oral "nectar" feeds. Apparently, "well" is an understatement. On Friday, the OT put in orders for Bodie to get 2/3oz by mouth every other feeding (about 1/2 his "full feed" amount). Well, by Friday night, they had increased it to every feeding, and by Saturday morning they had increased it to his full feed amount! He is now taking all feeds orally! And let me tell you, the kid LOVES to eat! He is taking about 2oz at a feeding now and sometimes more in between feedings if he starts to fuss for more! Because of this, they removed his ng tube and canceled his g-tube insertion (which had been scheduled for tomorrow morning at 7am)!!! It is an absolute answer to prayer! He's gaining weight (as of this morning, he's now above his birth weight - and almost over 8 pounds - YAY!!!) The nurses yesterday were astonished at how well he likes the bottle - and one of the nurses today said she'd never seen a hypoplast eat so well so quickly (usually, hypoplasts just don't have the energy to eat well - and that's especially true for nectar feeds, since it takes more energy to suck and swallow down a thickened fluid). If he keeps doing so well with his feeds, he'll be able to do complete bottle feeds at home! PRAISE GOD! We know that this is a direct result of the specific prayer we had asked for, so thank you for all of your diligent prayer!!!

As always, we still do have specific prayer requests:

1. Pray that he continues to be such a rock star with his feeds! Pray that he keeps his energy up to keep doing the nectar feeds (it can take a lot out of these kids).

2. Although he is taking his feeds great, there is some question about how to get his meds down. Since they are thinner substances, he can't just take them orally for fear of aspiration. We may try mixing them with his bottles, or thickening the meds, to reduce the risk of aspiration. Or, they may put the NG tube back in solely for his meds while he's still in the hospital. We should know more tomorrow when we have our OT consult. Pray that he doesn't have to get the stinky NG tube back in!

3. He is still having saturation issues (although not badly enough to earn himself a trip back to the CTICU just yet, thankfully!) and they can't quite figure them out. Right now they just have him on a oxygen and that seems to help - but it sure would be better if they could figure out the problem and try to fix it (rather than just send him home on oxygen).

Also, Bodie's roomate Isaac is doing better with his feeds (and I think bottle feeding is not too far off in his future!). Please keep praying for him - here is a picture of the cute guy so you know who you're praying for:

Thanks as always!

Amy

By the way

Even with the ups and downs, our little guy is starting to gain weight (all in his cheeks apparently!) And look more like a baby and less like a newborn. And, starting to smile!!!
Sent from my Verizon Wireless BlackBerry

A lot of questions...not a lot of answers

Bodie could use some serious prayer right now. He has really had a couple of up and down days and the doctors just can't seem to figure out why. His oxygen saturation levels continue to fluctate, requiring various amount of supplemental oxygen. When he's doing well, he is easily satting in the 80's on very minimal oxygen (1/8L (just barely above room air) to 1/4L). But when he's not doing well, he has a hard time maintaining 70-75 on over 1L of oxygen. And there doesn't appear to be much rhyme or reason as to which end of the spectrum he'll fall into at any given time.

Yesterday, he did fine in the morning, on 1/4L of oxygen most of the day. Then, at about 6pm, he started de-satting and they had to increase his oxygen. By the time I got back to the hospital at 10:30 or so, he was all the way up to 2.5L of oxygen and there were 2 nurses at his bedside discussing his situation. At that point, they told me if he needed any more than 2.5L of oxygen, they were moving him back to the CTICU. They also told me they did a x-ray and it showed a small amount of fluid in his lungs - they thought that was what was causing the lower sats, so they stopped his feeds and increased his diuretics. I was so frustrated since the last time his sats dropped, they claimed it was due to the fluid in his lungs - but clearing the fluid didn't really do much to increase his sats.

Well, overnight he improved dramatically, and was easily satting in the mid-80's at 1/8L of oxygen by the morning! The problem was, they did another x-ray and it looked about the same - so they had no explanation for why his sats improved, other than that perhaps his fluid levels were just off. But he satted great all day on 1/8 to 1/4L of oxygen and generally had a great day - so everyone was happy.

Then, tonight at about 5pm, he started de-satting again, so they had to increase his oxygen to 1L. I just got a call from the Nurse practioner, and they're really at a a loss as to why he's doing this. If he continues to do this, she thinks he will go back to the CTICU - not because he is critically ill, but because he needs a higher level of monitoring than he can get on the floor. And if it doesn't start resolving by next week, they may send him to the catheterization lab to look at everything in his heart/lungs to see if that can shed more light.

So, all to say things have gotten incredibly frustrating. Bodie is in the best hands right now (both the doctor's and God's), but no one can figure out what's going on with him so that they can fix it and actually get us out of the hospital. SOOOOOOOOOOO frustrating.

So, tonight, PLEASE PRAY THAT THE DOCTORS FIND THE CAUSE FOR BODIE'S EVER-CHANGING SATURATION LEVELS SO THAT THEY CAN TREAT IT AND GET US CLOSER TO GOING HOME.

On a happier note, Bodie has started smiling in his sleep. It is so sweet to see. He's also doing really well with his oral feeds, taking a little under half of his feeding in the form of nectar/breastmilk mixture and the other half via NG tube. They are still planning on putting in a g-tube and that is tentatively scheduled for Monday, but at least he can do some oral feeds, which is a huge blessing!

Swallow studies suck (literally and figuratively)

Bodie had his swallow study yesterday, and, if I had a picture perfect way I would have liked it to go, that wouldn't have been it. First they gave him nectar, which he did great with (they let him do 10 swallows and it went exactly where it was supposed to!) and then they gave him a bottle of thickened breastmilk. The OT doing the study turned her head for a second as she gave him the bottle and then turned back around, screamed "Oh my God!" and jumped back as we watched on the monitor as Bodie aspirated most of it into his lungs. I did NOT need to see a professional react that way. She actually apologized to me, saying she had been unprofessional, but the damage to my pschye had been done, I'm afraid. All told, I was left with 2 distinct impressions: (i) my kid can tolerate "nectar" (too bad I don't have the slightest clue what the heck "nectar" is - I just have visions of bees and flowers, but I'm guessing it's not the same kind of "nectar") and (ii) my kid must have had the worst case of aspiration the OT (who looks at this kind of stuff everyday) has ever seen. A bit unsettling to say the least.

Then, the other OT came by a bit later to talk about the study. After apologizing for the reaction that the testing OT had, she said the study was actually good news. Yes, he aspirated on the thinner fluid, but she had expected that given that he had gagged when she had tried giving him a bottle. But it's good news that he took the nectar without aspirating, as some kids can't even tolerate that (turns out the nectar is basically breast milk mixed with a gelatin, so it goes down more slowly and his body has time to adjust and close the trachea), which means we can feed him a bit by mouth. We can't just give him all nectar because it takes too much work for him to suck and swallow it, so there's no way he would have the energy to take in all the calories he needs to grow between now and his next surgery. So, yes, it looks like he will need a g-tube. I'm bummed (especially since it means breastfeeding is definitely out on account of it literally endangering the poor kid's life), but we knew it was a possibility. They did an upper GI study on him this morning, which I guess is the next step in the g-tube process (don't know the results yet, but no one screamed "oh my God" and jumped back, so I take that as a good sign).

I believe the plan is for the OT to work with him to figure out how much he can tolerate by mouth and then give him the nectar by mouth and then give the bulk of his feeds via the ng tube (for now) and the g-tube (once it's in). The good news about that is it means we can keep stimulating his suck and swallow reflexes and simultaneously strengthen all of those muscles so that when his vocal cords do heal, he'll already be used to taking food by mouth and it won't be such a difficult transition for him. I think it's all designed to avoid an oral aversion (how's that for a tongue twister?). I think they plan to repeat the study again in 3 months or so. The other really good news is that, because his weak cry was what clued them in initially that there might be a problem, we won't necessarily have to wait until a scheduled study to see if he's improving - if his cry starts to improve, we could get visible signs of improvement that would clue us in to redo the study sooner.

And in humorous news (hey, we have to find it where we can), Dusk dug Sierra's old bouncy seat out of the attic, washed it, and brought it to the hospital yesterday. Bodie's been a tad fussy the last few days, but once we put him in the bouncy, it was like magic - he immediately calmed down and started satting higher! In fact, we let him sleep in the bouncy seat last night and his sats were so great that he was completely weaned off oxygen by the morning! (He's back on it since his sats went down again this morning, but it's good to know that he likes the seat and that his sats are slowly improving - and that he can be on room air again! His little lungs are getting stronger). Any parent will tell you that bouncy seats are magical (I had somehow forgotten that they had the same effect on Sierra), but, as the night nurse explained to us last night, they're particularly helpful with patients in drug withdrawal. You know how you see drug addicts on tv rocking back and forth when they're going through withdrawal? Well, apparently the bouncy seat has the same effect - so basically, when my kid is being soothed by his bouncy seat, it's because he's so strung out he needs a hypnotic distraction. I swear, I could make so much money setting up a rehab program for cardiac kids post-surgery (either that, or patenting the bouncy seat for adults)!

Anyway, as you can guess, we do have a few specific prayer requests for today:
1. Pray that Bodie's little vocal cords (btw, apparently I've been spelling "cord" wrong - how embarassing! Leave it to my musically inclined husband to correct me on that one!) continue to heal. He actually had a stronger cry this morning, which made me feel so good! I don't know that it will change anything in their planned course of treatment, but it would be so amazing if his vocal cords made a complete recovery before they ended up putting a g-tube in! It would just be so awesome to look at the stumped doctors and tell them that the only reason it happened was because of prayer! So, please keep those prayers coming!
2. Please continue to pray for Bodie's roommate, Isaac - the poor guy hasn't gotten much sleep the last couple of days since it seems like someone is ALWAYS waking him up to poke and prod him (but it is kind of funny since it seems like he exacts his revenge by pooping on them when they so do!). Please pray that they leave him alone for a bit and just let his little body heal.

Thanks as always, my awesome prayer warriors!!!

Specific prayer request

Bodie says "they're doing WHAT to me today???"

Bodie needs some directed prayer today. Yesterday, he was evaluated by ENT. They put a scope up his nose and down the back of his throat to evaluate his vocal chords. Besides the fact that he went absolutely balistic and it took me 45 minutes to calm him down afterwards, the news wasn't exactly fantastic. Although it appears that his vocal chords do close, he has left vocal chord paresis (not even sure if I'm spelling that right). Basically it means that his left vocal chords aren't moving. I don't believe it's much of an issue from "will he ever be able to speak?" - from everything I've heard, most of these kids with vocal chord paresis outgrow it (or learn to compensate for it - they may just have a raspy voice). It's not an uncommon complication both from his intubation and from cardiac surgery in general (the nerve that controls the vocal chords runs around/through the heart). And let's face it, as long as I know his voice will come back eventually, it's not the end of a world to have a newborn that can't screem too loudly! :-)

It is, however, problematic from a feeding perspective, since there is such a risk of aspiration. The ENT has referred Bodie for a swallow study at 1pm today, during which time they'll give him a little bit of breastmilk in a bottle (mixed with barium) and do a constant x-ray to see where it goes. If it turns out it is aspirating into his lungs, they will most likely recommend putting a g-tube in. That's a feeding tube directly into his stomach. The advantages are that it is essentially like a button (or a very short tube) that you take the cap off, insert meds and food (I assume through a syringe) and then cap it off - so he doesn't have any long tubes or anything, can wear normal clothes, etc. The disadvantages are that it is a surgical procedure (so he'd have to be put under to have it inserted) and the biggest disadvantage - I won't get to breastfeed him. This is a really tough thing for me personally since it was such an amazing bond I had with Sierra and it is just something that I'll have to work through. The most critical thing is that Bodie gains weight and doesn't have any respiratory issues between the first and second surgeries. And the g-tube won't be permanent - the cardiologist told me most kids are able to have them removed by 6 months or a year.

So, Bodie needs your prayer this morning specifically for the following:
1. Pray that he can tolerate the swallow study - to do it, I think he needs to be able to take 10 or 15 cc's - when we met with the OT Friday, she stopped him after 5cc's because he was gagging and she was concerned about aspiration.
2. Pray that the swallow study shows that his gagging is NOT aspiration, but instead perhaps just a reaction to his ng tube and that he CAN take bottles and try nursing.
3. If that's not God's plan for Bodie, pray for patience for Dusk and I as we adjust our expectations for feeding our sweet boy.

Also, please pray for Bodie's buddy Isaac - he's having kind of a rough morning and struggling with a lot of the same issues Bodie's been struggling with (low sats, feeding issues, morphine addiction, etc.) - his parents are such awesome Christians and have already ministered to me on my rougher days. Pray for miracles to abound today for both Bodie and Isaac!!!

Thanks - and I'll update after the swallow study.

Bodie, meet Sierra...Sierra, meet Bodie

Yesterday was a BIG day for both Sierra and Bodie - thanks to an awesome nurse we had over the weekend, Chrystal, we were able to take Bodie downstairs for a bit to meet Sierra!!! It was such a neat meeting - Sierra was totally in awe of him, and was cautious around him - she was so excited when we told him she could touch him. She wanted to touch his head and his hand, and see his "boo-boo" (that's where we drew the line, since he was swaddled pretty tightly!). It really warmed my heart to see the two of them together. Here are some pics of the sweet moment:








In related news, Dusk, Sierra and I stayed at the Ronald McDonald House near the hospital this weekend and it meant I got to spend more time with Sierra and Dusk got to spend more time with Bodie! While it was wonderful to get to spend more time with Sierra, she has clearly hit her limits with the changes in her little world - and has started acting out a LOT. Dusk and I debated heavily who ended up with the greater challenge - me, with the tantrumming 3-year old - or him with the newborn strung-out on morphine. :-)

Big day for Bodie

Bodie had a BIG day today! He was weaned off his oxygen at about 2:30am and has been on room air since and his sats have really held their own the whole time! Clearly all of your prayers did good work! Getting off oxygen is a huge step for heart kiddos after the Norwood surgery, so we were thrilled to see such progress! Then, the doctors and nurses decided he wasn't critical enough to be in the CTICU any longer - so they kicked him out to the 6th Floor West, the step-down floor! This is where we'll work on feeding issues and get Bodie ready to head home (and us ready to take care of him)! Then, his former roommate, Isaac, made his move to the 6th Floor West later in the afternoon - and they are once again roommates! We were so excited to see Isaac's wonderful mommy Cindy (and his daddy Jeff) again!

In the afternoon, an OT came to work with Bodie and assess his sucking, swallowing, etc. reflex. The good news is that his suck and swallow reflexes are great - he took to the bottle well (they actually let me put him to the breast, but he wasn't quite sure what to do - looks like that will take a little more time, but it really meant a lot to me that they let me even try! It was a wonderful moment for mama). But, based on his weak cry and the fact that he gagged after taking from the bottle, they're guessing he has some element of vocal chord paralysis and put in a request for an ENT evaluation to make sure. The way the OT explained it to us, it's all related - apparently, we all have 2 pipes (a tracheal, which we breathe out of, and an esphogeal, where food goes) and our vocal chords fold over to prevent food and liquids from going down the trachea. If there's some vocal chord paralysis or damage, food or liquids can go down the trachea, causing aspiration into the lungs (this is a huge concern for hypoplasts since their hearts and lungs are working so hard anyway, they really can't afford to have anything extra aspirating into their lungs). The good news is that Bodie did gag, so he has some sensitivity there (it's not complete paralysis) - but the question remains as to whether it's just weakness due to how little he is and how long he was intubated - or whether it's something more. We probably won't know for a while - the ENT consult won't likely take place until Monday. In the meantime, if you could please pray specifically that God would lay his healing hands upon Bodie's little vocal chords and have him make a complete recovery, we would really appreciate it!

Thank you so much for your continued prayers!!! I know Bodie would not be doing as well as he is without your continued support and prayers.

Oh, and here's a picture of Bodie, smiling, thinking of all of his wonderful friends and family thinking about and praying for him tonight:

Moving on up!

Our little man is now oxygen free and got moved up to the 6th floor, the step-down unit! That much closer to coming home! Praise God!!!
Sent from my Verizon Wireless BlackBerry

So much to be grateful for...

You know, Children's Hospital is a tough place to be. Every single day, I see children with conditions that can't be cured, who will never lead "normal" lives - I see these kids with their parents waiting to check-in, I stand by them in the elevators, I see parents pushing them down the hallways and every single time, I look at those children and think how lucky I am - that Bodie has something that, while it can't be cured, can be cured "enough" that he can hopefully lead a "normal" life - that the doctors know what's wrong with him and exactly what they need to do to treat it. So you see, how lucky you are is all relative. It all depends on what you're focused on - on whether you focus on that makes your situation tough...or on what makes it special. So, in light of this, here are a few of things I'm grateful for in our situation:

1. I'm grateful for the incredible doctors and nurses at Children's Hospital. Seriously, these men and woman are absolutely amazing and specialize in performing miracles every single day. The surgeon who worked on Bodie, Dr. Starnes, is unbelievable - God has given him such a gift and he uses that gift to give so many kids a chance at life. And the nurses are so kind - I swear, they love their patients as much as the parents do. We have loved every single nurse who's taken care of Bodie and I will truly miss the incredible CTICU nurses once Bodie moves to the step-down unit. It is only because of the amazing nurses and knowing Bodie is in such good hands that I can feel comfortable coming home and spending time with Sierra at night.

2. I'm so grateful that we live in LA (probably the only time I will write that phrase!), less than an hour from Children's Hospital. I'm so glad we didn't have to uproot our family and travel cross-country to treat Bodie's condition.

3. I'm so grateful for my mom, who, bless her heart, has been staying with us since the day before Bodie was born. She has an unbelievable ability to see where there's a need and just fill it - she has driven with me to the hospital almost every day, done countless loads of laundry, unloaded and reloaded the dishwasher every day, washed my pump parts too many times to count and most importantly, been there for Sierra, picking her up from preschool, making her lunches and giving her baths. She probably feels like an indentured servant at this point, but we are so grateful! We can never thank her enough for all that she has done for us!

4. More than anything, I'm grateful for all of your prayers. It is only because of all of your prayers that Bodie is doing as well as he is!!! Speaking of the little man, here are a few pictures I took today when Daddy got to spend some time with him - and hold him for the first time since surgery!!!



And his first IPOD...

Looks like I need to clarify...

From the responses I've gotten to yesterday's post (and the responses my mom has gotten upon forwarding it), it looks like I wasn't clear enough. Bodie is doing REALLY WELL. I mean, he's still in an ICU and is fragile due to his heart condition, but is doing really well considering. It's actually GREAT news that his little morphine addiction is most likely what was causing his lower saturation levels - it's a common cuplrit and they have a protocol for treating it. It means the lower sats aren't caused by (a) his heart (meaning the shunt isn't working properly, and they might have had to go back in) or (b) fluid in his lungs (meaning they might have had to put a chest tube back in). Of all the possible culprits, a little drug addiction is probably the easiest to treat! They have figured out he only needs 3 doses a day (every 8 hours), which is pretty low actually, and they'll start weaning him in the next day or 2. He is definitely still on the road to recovery (albeit a long one, but he's moving forward!) We got more good news in rounds this morning, when they told us they're taking off the vapotherm today and moving him down to the nasal cannula (definitely a step forward) and he's back on full feeds!

He's also having alert time where he's just looking at us, content - that's really fun. Here's a pic to prove it...


Anyway, sorry to scare you all with yesterday's post - yes, he's still in critical condition (hence his stay in the ICU) and yes, he definitely needs prayer - but he's doing really well!!!

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...