Wednesday, June 29, 2011

Hair loss

This morning as I was feeding Sammy his bottle, I watched Elijah run around the room with all of his crazy energy. Underneath all of his flowing hair, I spotted a bald patch on the back of his head about the size of a golf ball. My heart sank. I called the doctor and got him an appointment right away.

The doctor thinks that the most likely scenario is that he has stress-induced alopecia, the stress obviously being his recent surgery. There is a good chance that he will lose more, but there is also a good chance that it will grow back.

I realize there are much worse things to have happen, but I'm feeling sad and defeated. My heart is heavy and I don't feel like I can handle this. Not now. I want to lock myself in my bedroom and cry.

So that is our story today..

Monday, June 27, 2011

....still healing

Lately when I come here to write a post, I sit down and think.....poashigoauwerhgiuehgah. I don't know what to say anymore. I'd love to tell you that we are all doing great. Well, I CAN tell you that Elijah and Sammy are doing great. And I don't want to speak for Dan, but I would not always describe my state of mind as "great."

Intermission....cute cute Sammy...

He's so stinkin' sweet. We love this little boy to pieces. He is SO ATTACHED to Dan and me. It is good and bad. Good when he is wrapping his chubby arms around our necks, but bad when we have to leave him at daycare. :( Or leave him in another room. He is only happy when he is in our arms.

Intermission done.

I have never in my life experienced such intense emotion. The months leading up to surgery were insane. The anxiety was indescribable. Then, surgery happened, and it was a breeze compared to our last two times. And then we got home and.....what the heck?! I didn't know what to feel. My tanks (emotional, physical, mental, everything, etc.) were on empty, so I (not speaking for hubby) have been doing the bare minimum. Care for children, shower and get dressed, be a good wife, eat food..

We have been spending some time at the dropzone, which has been very therapeutic for me (and I hope for all of us) but at the same time it has made us all tired just because we're not sleeping in our own beds. I feel like we are on a path toward peace, but we aren't quite there. This is a tough road. One that cannot be explained unless you have been through it.

Thanks for checking in on us. We appreciate and love you all so much!

Wednesday, June 22, 2011

Wots of snuggles

Elijah's post-surgery check-up went great today. Dr. G thought he looked amazing! I mentioned the blood pressure concerns and he took me seriously (LOVE him). Even after the nurse had checked his BP in both his arm and his leg (by my request), Dr. G checked it again himself. There was still a discrepancy, but he felt ok with it. He confirmed that the pressures in his arm are the most important, and Dan and I both felt good hearing that from him. We talked about this on the way home...there is just something about hearing comforting words from Elijah's very own doctor. It means so much more than hearing it from anyone else. We adore Dr. G.

An aside: Elijah has been asking more than usual lately for snuggles. "MOM! Pweeeeease come snuggle wif me! Please wub mine hair!" I NEVER NEVER EVER turn down this request.

Elijah's xray looked great today. His new valve function looks great and he has no fluid retention, which is all awesome news. His incision also looks perfect. We are cutting his Lasix dose in half and continuing with the Enalapril until we see Dr. G again, which will be in four weeks. I asked about sending Elijah to daycare and he said it is ideal to hold off for one month from the date of surgery. We will do our best to make sure this happens.

I haven't mentioned since surgery how grateful we are for Dr. K, Elijah's pulmonologist. His PLAN, the one that kept E from getting post-extubation croup, was a total success. I will never forget walking into Elijah's room after extubation and seeing a completely croup-free boy and being totally blown away. I looked back and forth between the nurse and the respiratory therapist like, REALLY?!?!!? A huge blessing is knowing one of Dr. K's awesome nurses, so I asked her what the best way to thank him would be. She suggested leaving a nice voicemail on his pager, so I plan to do that this week. Hopefully I can hold the tears back. He is one of the most amazing doctors we have ever met. His dedication and love for his job is inspiring. There are not many people like him!

And we still have to think of ways to thank our beloved Dr. G and Dr. M.

Despite the good appointment today, Dan and I are feeling a bit more down than usual. This has been such a life-changing experience and we aren't quite sure how to handle it all yet. We continue to pray for peace and normalcy. Thanks for all of your good thoughts and prayers. We appreciate you all so much.

Tuesday, June 21, 2011


Elijah, one week after OHS. Incredible!

The past week has been surreal. I still can't believe things went so smoothly with Elijah's surgery and part of me is waiting for the other shoe to drop. The amount of anxiety I experienced between mid-February and June 10th is gross. So now that surgery is done, I'm left with....what? Where does all of that anxiety go? Does it turn into something else? Does it just go away? I still feel a good deal of sadness, but I also feel relief and happiness. Hopefully with a bit of time normalcy will return.

We have gotten out of the house a tiny bit since returning home, and we have even spent some time at the dropzone (Elijah's favorite place).

Elijah is doing great. Most of the time he has crazy amounts of energy and he runs around like a wild man. He has a post-surgery check-up tomorrow with Dr. G. I'm curious to see what his blood pressure is at and if there is still a big difference between his arms and his legs.

Sammy has been great, too. He is such a good baby. He is very patient with his big brother's sassiness and unwillingness to share.

Sam has been sucking his thumb more than ever. If anything upsets him, his thumb goes into his mouth immediately. He likes to crawl into my arms and snuggle up to me while he sucks away at it. He can say "BA" for "ball," "DA" for "Dad," "MA" for "Mama" and "AH-DUH" for "all done." He is taking tiny steps on his own. He can successfully take two steps and then he will fall down and giggle.

We are slowly working at removing the sticky tape residue from all over Elijah's body. It is hard to get off! And Elijah screams any time I even look at it, so it's been a slow process. It looks like we are a family of vampires!

That's all for now! Thanks for checking in..

Thursday, June 16, 2011

Battle wounds

I am not the mom who comes home from the hospital and attempts to immediately wash off all of the "hospital dirt." Removing stickers and tape and anything sticky from Elijah's body is traumatic for him, so I tend to just let it be. He has been through enough. The stickiness will come off eventually.

Elijah found his toy stethoscope this morning and had it in his ears for most of the morning. I asked him, "Hey Elijah, what do you want to be when you grow up?" He has never had an answer to this question before, but today he said, "DR. GWEMMELS!" :)

It was a beautiful day today. Totally deliciously beautiful. Elijah went back and forth between wanting to be outside and wanting to be on the couch. He has done an amazingly good job of limiting himself and listening to his body. There were times when he would sit his bottom on the couch and ask for a movie and chill for an hour or two. And there were other times when he was all over the place, playing like a crazy man. A couple times today I looked at Dan and said, "Really? He had heart surgery less than a week ago??"

Sammy has definitely been affected by our broken schedule for the past week. He is extra clingy and not being his usual happy self. Every time I hold him tight to my chest, he sucks his little thumb for comfort. That's something he usually only does at bedtime. Hopefully in the next days/weeks he will realize that his family isn't going anywhere! We love our chubby Sammy so much.

We are in the throes of surgery aftermath. Unless you have experienced it, you might think it sounds crazy. We should feel nothing but relief, right? After surgery #1, I was blown away by the emotion that followed hospital recovery. After surgery #2, I had forgotten about that emotion until it happened again and then I quickly remembered. This time, I knew it was coming, but that hasn't made it any easier. Every time I look at Elijah I thank God a thousand times. I have been crying a lot in the past few days. Happy tears, tears of relief, tears of sadness, tears of total joy and painful tears plague me all at once and all the time. This is an indescribable experience.

I saw on the doctor's discharge orders yesterday that Elijah is not supposed to return to daycare for four weeks. Four weeks?! My first reaction was not a positive one, but then I thought of the reasons for having such rules. And those reasons were confirmed today when my friend Jess graciously came to our house to bring us lunch. She almost picked Elijah up under the arms, so I had to quickly share his limitations. That just shows that it is instinct to want to pick up a cute little boy. Dan and I have to be Elijah's constant advocates right now. He has to be in the best care possible...with us! So, we will figure something out.

Elijah is doing great. He is so funny and full of energy. He is constantly making us laugh. Every night before bed I say prayers with him and sing songs. Here's an example of one of his recent prayers: "Thank you, Jesus, for this day. Thank you for Mommy, Daddy, Elijah and Sammy. Thank you for Gwammie and Gwamps and Gwamma and Gwampa. Thank you for cars to drive and food to eat and toys to share. Thank you for comfy beds and for our new tway-wer and our new wittle kitchen. Thank you for drawers and doors. Amen. OH! And thank you for curtains. Amen. OHHH! And thank you for pictures! AMEN!"

That's all I have for now. We continue to heal as a family in so many ways. Thank you so much for the prayers and support. We couldn't have gotten through all of this without you all!

Wednesday, June 15, 2011

So long, hossa-pi-doh!

We are home. I'm in disbelief. The blood pressure discrepancy (the difference between pressures on E's arms and legs) has me feeling slightly uneasy, but we talked to a cardiologist before we left. She said the only reading that truly matters is the one from the arms. Because I'm crazy, I think I'll call Dr. G when he's back in town (he left us to go to Brazil) later this week to get his thoughts.

I have some thoughts brewing in my head, as always after a big surgery, but for now I will let the following photos from the past few days speak for themselves. Thank you, everyone, for the amazing support, whether through prayer or help with food or by visiting or writing or calling or reading this blog. THANK YOU. We feel incredibly loved and we are feeling so very grateful right now for all of you.

5-day hospital stay?!

I arrived at the hospital this morning only to learn that....WE ARE GOING HOME! Apparently Elijah's blood pressure, when taken on his right arm, reads way differently than when taken on his legs. Leg pressure reads between 120-130. Arm pressure reads between 90-100, which is an ideal BP for him. His neck line has already been removed and he is totally free of wires and tubes! I still want to talk to the doctor about the discrepancy between the arm and leg pressures, but it sounds like they are comfortable with it.

Elijah is in great spirits, as usual. He's watching Toy Story 3 and playing with his toy hospital (that happens to have a plastic Dr. Moga and Dr. Gremmels) while we wait to hear when discharge will occur.

He will go home on lasix (fluid retention) and enalapril (blood pressure) and reevaluate both meds next week when we go in to see Dr. G.

I'm still in a bit of disbelief, and haven't processed things yet. Hopefully our next update will be from HOME!

Tuesday, June 14, 2011


I'm hanging out at home tonight with Sammy while Dan spends the night with Elijah in the hospital. It was really difficult for me to leave the hospital this afternoon. I have never spent a night away from Elijah while he has been in the hospital. One thing made it easier, though. Sam! My cute, chubby Sam. When I picked him up from daycare, he grabbed onto my shirt and wouldn't let go. I think he was pretty happy to see me, and the feelings were most definitely mutual. I can see that this ordeal is affecting him a little bit, too. He isn't eating well during the day (when he is away from us), and he is exhausted. I could see it in his eyes right away. He was asleep by 6:00 tonight.

Elijah's blood pressure is definitely a worry at this point, and it is the only reason he is still in the hospital. He is now on two blood pressure meds, one IV and one oral, and he is just barely keeping his BP where the doctors want it to be. The goal is to wean him from the IV med, but he is still on the max dose so we need some answered prayers. Dan and I are extremely grateful for how well E's recovery has gone so far, so we can't really complain about this hiccup. Being totally sleep-deprived and drained, though, makes every little issue seem insurmountable.

If you saw Elijah right now, you would NEVER know he just had open heart surgery or that he is dealing with high blood pressure. He is full of energy and appears to be feeling like a million bucks. Anyone who steps into his room will most certainly get their ears talked off and will leaving giggling and smiling.

I'm not allowing myself to feel much tonight. I assumed I would have my usual post-hospital breakdown upon arriving home, but apparently I'm not ready for that yet.

Here is an exciting thing! Elijah got to take his first post-surgery walk last night through the hospital! Dan's mom snapped these cute photos..

I'm so proud of my amazing boy! BOTH of my amazing boys. I will be one happy mama to have all of my boys at home together again.

Thanks so much for the prayers! Please continue to pray for that darn blood pressure to cooperate.

OHS #3 day #5

The Dr. M team just stopped in. Wow, there were a lot of them today! The only issue that remains is Elijah's high blood pressure. He is going to have to start another bp medication because Dr. M isn't comfortable with where it's at. His words: "And hopefully he doesn't have to be on it long-term." The possibility of this is a bummer, as E has never had to be on medication long-term. Praying hard for things to work themselves out.

We had a good night, considering. I've found that having an early riser in the hospital is a tiring combination. Elijah was up bright and early (4 AM!) talking and ready to play. Many people have commented on how funny and talkative he is so early in the morning. Yep, that's our boy!

It's 9:20 and Elijah has had 2 neck dressing changes, 1 echo, 1 unnecessary blood draw, 4 glasses of juice, 1 glass of water, 1 bagel, 2 crackers and we are on our 5th movie. Is it time for bed yet??

Monday, June 13, 2011

OHS #3 day #4

Day 4 is done and it was overall a good one. We got rid of Elijah's oxygen (yay!) and the other line in his hand. The only things left to ditch are a handful of meds, his high blood pressure and his neck line. We kept his diet bland for the last half of the day and he didn't throw up after noon. We'll take it slow with the eating again tomorrow. If we can get his blood pressure under control, I can see us leaving here very soon. Every hour when his BP is taken, I stare at the monitor intently, think of home and pray!

Elijah was hilarious today. He had so many people laughing. He's such a little character. His nurse this morning asked me if he was having a reaction to a medication. Uhh, nope! He really talks this much! :)

Dan is home with Sammy tonight. It's hard for me to think about. I miss him so much. I know we have had pretty much the best case scenario for this surgery and recovery, but I still just want our family to be all together again. I feel incomplete when we all are not together. I miss that chubby little boy!

Elijah is drifting off to sleep next to me. I'm going to read for a bit and then head to bed myself on this delightful thing they call a bed.

Hourly blood pressure just taken...109/52. Still too high. Praying for better numbers tomorrow.

Tummy troubles

Elijah is having a hard time keeping food down today. The doctor thinks it could be his body's way of dealing with all of the medication that has been in its system. Please pray for him to start keeping food down again!


Dr. Moga and the crew stopped by for rounds just now. He was hoping that E's blood pressure would've gone down through the night, but he wasn't too concerned at all. He said that we'll just leave him on his BP medication for another day. He expects E's body to adjust and the pressures to normalize by tomorrow.

Elijah is in a very good mood and seems to be feeling fine (minus a little throw up session he had a little bit ago) while he watches "Despicable Me"...again.

Megan and I are swapping naps for the last few hours we have the sleep room. We're tired but feeling very grateful for how well things are going overall. One of us will leave this afternoon to get Sammy and be with him at home and then we'll rotate until Elijah gets to come home.

Thanks again for all the support and prayers!

Could use some prayers

Elijah is maxing out on his blood pressure meds and his pressures are still higher than desired. We need some specific prayers for low blood pressure! Thank you!!

Sunday, June 12, 2011

A visit from Sammy

I haven't said much about what Sammy has been up to for the past few days. Dan's mom has been gracious enough to watch him over the weekend. I miss him terribly. I keep reminding myself that I'm away from him for a very good reason, but it's still hard. I can't wait to have everyone back together in one spot...home!

Grandma and Sam stopped by for a quick visit yesterday. It was so good to see him. I hugged his chubbiness tightly until it was time for him to leave. I can't wait to see him again.

Elijah treated Sammy about like he usually does...he wasn't overly kind. And Sam, like usual, was curious about everything his brother was up to.

I love this sequence of photos where Sam goes in for Elijah's medical ID bracelet.

E was pretty patient for the first little while.


Elijah's exact words were, "SAMMY, NO SWOBBERING! NO EATING MINE BWACEWET!!"

Aahhh, brotherly love. I know that deep down, Elijah was happy to get a visit from his little bro.

Elijah is doing wonderfully tonight. He's napping right now. They've lowered his blood pressure meds so his BP has gone up a bit again. Pray for that to stay low! Everything else is looking great.

More tomorrow....thank you for checking in on us!

Great progress

On top of having his arterial line (accidentally but thankfully) removed, Elijah also had his chest tubes and catheter removed today! He has even already gone potty a few times, which is awesome since he's had a hard time with that in the past. We got him out of bed and he took a few steps to the chair to sit up for a bit and watch a movie. I just can't believe how well he is doing.

Dr. Moga did mention E's slightly higher than desired blood pressure, so we've been keeping an eye on that today. Just in the past hour, it has started to come down a bit. His oxygen sats are getting better, as well. All steps in the right direction!

He is in MUCH better spirits today, but still remains Sassy Elijah. He's pretty content chilling in his bed and watching movies. Dan just got back from a nap, so I might go take a turn, as sleep has not exactly been plentiful. Thanks for checking in!

OHS #3 day #3

Elijah had another good night, and is much more himself today after being weaned off some drugs. His arterial line had to be removed at midnight (quite the ordeal) because it was bent in half (??), and ever since then his blood pressure has been higher than they want it. He is still wearing the nasal cannula for oxygen because his O2 sats are in the low 90s. His heart rate is a little higher than it has been, too. Dr. M and crew will be making rounds shortly, so I'm sure we will hear their thoughts on everything soon. We heard yesterday that his chest tubes might be removed today, which would be great!

Dan and I took turns sleeping in our very nice RMH room last night, but we are still exhausted. Starting tonight we will take turns going home and being with Sammy. Hopefully sleeping in our own bed every other night will help a bit.

We are thankful that our friends and families have been taking such good care of us! Thanks, everyone, for keeping our monkey in your prayers, and for loving all of us.

More later, once we hear from Dr. M..

Saturday, June 11, 2011

OHS #3 day #2

So long to the Sweet Elijah. Oh my, has he been a crabby guy today. Not that I blame him one bit. Lots of talking back, asking to go home repeatedly, telling anyone who says anything at all, "DON'T SAY IT!" and swiping at Mommy. He has been fighting sleep all day and just finally fell asleep. I sent Dan down to our room at the Ronald McDonald house on the floor below us so he could nap, too. So I have time to upload photos!!

On our way to the hospital yesterday..

He wasn't happy about having to stop playing before surgery..

Immediately following surgery. Honestly, this is the best he has ever looked after surgery before. I think he looked absolutely wonderful! You know, considering what he'd been through.

Getting some Mama love.

After his successful and drama-free extubation! He still has the canula in his nose, providing him with oxygen as he recuperates.

Surrounded by his animal friends (all of these plus a few sleep with him in his bed at home every night).

I think his animals help to make him feel secure.

I took this photo about 20 minutes ago. He is already sitting up in bed, eating graham crackers and drinking juice! We are so excited about his amazing recovery so far.