Coils

Heart cath #3 is donedonedone! What a relief to have that behind us. We have jumped over another hurdle, in this journey filled with lots of hurdles.
 
Yesterday went very well. The procedure itself took longer than expected, but everything went great and Elijah was a "superstar," as Dr. Gremmels calls him. Dr. G ended up putting eight coils into the collateral arteries that surround E's heart/lungs in order to stop the bloodflow in them. There were a few areas where the collaterals were supplying duplicate bloodflow to his lungs, so the smaller of all the duplicates were the ones coiled off. These coiled collaterals will no longer deliver blood and will shrivel up. The metal coils will stay in his chest forever. Now the bloodflow in his chest is much more efficient and there isn't as much "mixing" of red and blue blood. This is good because his body won't be working as hard to get all of that unnecessary blood pumping everywhere. Now his blood-oxygen saturations will be much lower, but this will be "normal" for him until his next open heart surgery when his VSD (hole) will be repaired. Anything between 80-85% will be good for Elijah right now. Before this cath, they were running around 90%, which was too high for him. Dr. G also ballooned a portion of Elijah's main pulmonary artery that was a bit narrow. Hopefully that artery will continue to grow nice and big.
 
When his next open heart surgery will take place will be based on how he grows in the next year. If he continues to eat like a starved lion in the wild and continues to gain weight, he will outgrow the shunt that is acting as his pulmonary valve sooner rather than later. Our way of determining if he is outgrowing that shunt will be his blood-oxygen sats. When those start to creep down toward the 70% mark, surgery will be necessary. Dr. G thinks this may happen anywhere from 6 months to a year, depending on how chunky he continues to get.
 
Elijah did great yesterday. He was understandably crabby for a few hours after the procedure. He was tired, hungry (he hadn't eaten since 3:00 that morning) and in a little discomfort. Once we took care of those three things, he was doing great. We were finally able to feed him at 6:00 last night, and we have never seen anything like the ravenous hunger that he unleashed on those poor bottles. Wow! He just kept eating and eating and when we added everything up, he'd had a whole typical day's worth of food in less than 12 hours! He'd get done with a bottle and just cryyyyyy till we gave him more. Then we tried solids and he gobbled those up. Then an hour or so later he was gobbling down more bottles. The boy does not like to miss a meal....and if he does, he apparently needs to make up for it.

Oh and I'm happy to report that all of our nurses were wonderful!


Daddy and Eli snoozing before surgery


Mommy reading to Elijah after surgery


Some things never change no matter how bad he's feeling....reaching for everything in sight....


...and vigorously eating the tag on his rattle..


Our penthouse suite on the 3rd floor


We're always so glad when we get a room on this floor. We have our own private space. That couch you see in the background is what Dan and I squish onto at night. We've slept on MUCH worse at the hospital, so this is wonderful to us.


Tonight, feeling much better. It's so amazing how quickly these little ones bounce back. Lately Elijah has been swinging his arms around at lightning speed. The camera couldn't even capture them!

Home

Wanted to write quick to say that we're back home. Elijah is doing great, as usual. I will post more details (and pics) tonight. Right now I'm off to work and Dan and Elijah are hopefully going to get some rest. It was a sleepless night, as are all nights in the hospital.

Thanks for all the prayers! More later....

Done

Dr. Gremmels just came and talked to us and things look good. They got everything done they wanted to and the little man did great.
Elijah just had his breathing tube removed and he's in recovery. We'll get to see him soon when he's moved upstairs.

The G-man said they'll keep watching overnight but he expects to be able to send us home right away tomorrow.

Thanks again for all the support and prayer, one more step is behind us!

Another Update

We just got another call from the operating room and Elijah is doing well. They just finished putting coils in where they were needed. They had to use more than they originally though, 7 total, but his bloodflow is already looking better.
Right now they are starting to balloon his Pulmonary artery which has narrowed, this should take about an hour or so.

He should be all done after that, we'll post a final update when we're upstairs in his overnight room.

Cath Update

Elijah has been in surgery now for about 3 hours. We just got a call and up to this point they've just been taking pictures and figuring out everything that's going on in his little heart.
They found 2 areas that they will put coils in to close off the collaterals that aren't needed. There's also another artery that looks like it will need to be ballooned open.
We were told that the rest of the procedure could take awhile, please pray that everything goes smoothly and the Dr's are able to accomplish what needs to be done.

Since they are having to do so much we will be staying the night. The Dr wants to keep an eye on Elijah and make sure his body rebounds well from the surgery.

Thanks again for all your support and prayers.

Heart cath tomorrow

Elijah passed his pre-op physical on Friday and is set to go for surgery tomorrow. He still has a cough, but his lungs sound great, he doesn't have a fever and he hasn't thrown up in over a week. We have to be at Children's at 8:00 a.m. and the procedure starts at 9:30 a.m. Please pray for an uneventful, quick cath with no complications. Oh, and good nurses. At Elijah's last cath, we had some nurses who made the day pretty difficult for us all.

He has been an amazingly good baby these past few days. Aside from screaming when we suction the boogers out of his nose, he is soooo happy and fun. Love this kid!


Riding in his new wagon


Hanging out in the LoveSac


Daddy taking aggression out on a poor pumpkin


We thought Elijah might want to dig his hands in the messy pumpkin guts, but he was more interested in eating the paper we had it sitting on


He wasn't so sure of the pumpkin...he glared at him for a while before we finally had to separate the two of them. Notice the blankie he's wrapped in...it's his new blanket from fellow heart mama Samantha. THANK YOU, Samantha!! Elijah loves it! It is sooo soft.


Could there be a sweeter face?

He's baaack

For the past twelve days we have dealt with nothing but copious amounts of puke, sleep deprivation, nasty coughing, gigantic green and stringy streams of snot and a very unhappy, unrested child. Today, for the first time in almost two weeks, I came home to a happy, smiley, wonderfully tempered boy who loves his mommy! It was wonderful. We finally have our healthy, happy boy back! For the past two weeks we've had to work to get even a smile out of him. Now all I have to say is, Hi Elijah!, and he giggles and smiles crazily at me. I love it.

Tomorrow I'll be bringing Eli to get his pre-op physical and flu shot. Saturday Dan and I have a night "away" in Stillwater. Auntie Lissa will be watching Elijah overnight so we can have some baby-less time to chill. And sleep. We need it. Thank you, Lissa!

Here are some pics of our gorgeous man:


Sprawling out on Mommy....he sure likes to be comfortable!


Trying to get him to use his legs. See how he just sticks his butt out? Thanks so much, Roger, for the great wagon and sled you sent! We love them.


Daddy rubbing Eli's tummy before bed

The Sleeper is (mostly) Back

Aside from feeding him, we didn't have to go into Elijah's room once in the middle of the night. At 4:38am I couldn't believe I was waking up to silence instead of fits of snorting and crying. Of course I didn't get back to sleep because my body is used to being awake at that time anyhow, so I laid in bed anticipating noise. I didn't hear a thing until 5:58! The steroids are done, the cold is getting better every day, and hopefully that means that our sleeper is back. Dan said he heard a few cries in the night, but nothing that lasted longer than a few minutes. One of these days we may be semi-rested again and I am ecstatic at the thought of that.

We are in the middle of getting Eli assessed for home therapy. A handful of therapists and evaluators have been coming to our house, putting crayons in his hand and crackers in front of him to test his "skills." He's 8 months old, do they think he's going to do anything with a crayon besides chew on it? So far they have said he is definitely eligible, which means he's definitely behind, but we have to wait for the final report to see exactly how far behind. Last night I was working with him on rolling and while trying so very hard to reeeeeach for a toy, he actually rolled from back to tummy! I wish I had it on video because it was one of his top 10 cutest moments. He got to his tummy and realized...wait a second! I don't like tummy! So he scrambled to get back to his comfort zone, bulldozing toys and books out of the way to get there. He looked at us like, I'm not doing that again, you sneaky parents.

Healing up

Elijah is feeling a bit better today. He still has a wicked cough and has been throwing up occasionally. His steroids and nebulizer treatments have kept him from sleeping as well as he normally does. Last night he was up from about 11pm to 5:30am, when we finally just got up for the day. He has to take the steroids for two more days and hopefully after those are done he'll start sleeping wonderfully through the night like he did before. This is killing Mommy and Daddy! We are zombies (especially Dan). Because Elijah is still not 100%, we probably won't start his new daycare until next week, after his heart cath. That is scheduled for next Monday, so we pray that he'll be healthy enough to go through with it. We really do not want to reschedule it again. We have realized lately that our boy is....well, he likes to be comfortable. We've watched him from afar while he's playing with his toys and he totally has the physical ability to roll from his back to his tummy. He just doesn't want to do it! When I prop him up in an attempt to get him to sit on his own, he'll just lean back and rest comfortably on my legs. I think he'd just rather not do the extra work. He's definitely going to be a very late crawler/walker. That's ok....that gives me more time to smooch on that juicy, chubby double chin without him running away from me.

Elijah has definitely gotten his appetite back. He swallows his food at lightning speed. I have to be super speedy mommy to get those savory sweet potatoes to his mouth in time.





Getting a nebulizer treatment


Cute weiner dog outfit. And look! He's holding his bottle all by himself!


Don't you just want to smooch on that pretty face?

Life is precious

Please keep these two families in your thoughts and prayers, as both of them have lost a little girl this weekend.

I will be snuggling with my boys a little extra tonight.

'Roids

You may find Elijah pumping iron at the gym in the next few days. Our baby is taking steroids. Dr. Judy thought it might help heal his wheezing lungs to give him a few doses of it over the next few days. He's doing a little better today overall. He still has a nasty, deep cough, and isn't completely back to his usual spunky self, but he's on his way. We are also giving him nebulizer treatments every four hours to keep the airways in his lungs opened up. Yesterday he got another xray of his chest and his lungs looked clear, thank God, so we know we're on the road to recovery! He is still throwing up a bit, we think due to the extra phlegm getting down into his tummy. Last night he threw up his dinner bottle and was pretty fussy and upset, but today he's been eating like a piggy and keeping everything down. He even ate solid food for the first time in a few days! He's finally starting to sleep a little better at night, only waking up a couple of times. Dan has been amazing this week. He's been up with Elijah a lot at night and he has watched him all day every day...he is a tired daddy. I made him take a nap this morning while Elijah and I played downstairs.

Today Elijah is 8 months old! Happy eight months, my precious boy. We love you so much!


Spunky Elijah--last weekend, before the sickness hit


A smile I got out of him this morning.



He's feeling good enough to attack the camera lens cap

new opportunities

We have some news! We have recently decided to switch daycare providers. Carrie and Mike have done a great job with Elijah. We know they care about him and we are definitely leaving on good terms.
 
We have two main needs in mind: that Elijah gets the extra tlc he needs when he's not with us, since he needs a little more than the average baby, and that he doesn't continue to get sick this winter. He has a few surgeries coming up and we need him to stay as healthy as possible for those. Last week, a new opportunity fell into our laps. I found out about a friend of a friend who currently cares for one baby in her home in Eden Prairie (Right next to the high school...perfect for us! More on that below.) and how she may be willing to take one more baby. She doesn't typically seek out business, but if it finds her she figures it's meant to be. We met with her and immediately knew this is where we want Elijah to be. She is very flexible, nurturing, kind and safety-conscious. She has 20+ years of experience and is willing to work with Elijah on his physical therapy, which is great. Since she only cares for one other baby, she has the time to give our man some extra attention and he will not be exposed to a plethora of kiddie germs. We're so excited about finding Carrie (yes, her name is Carrie, too). Elijah's first day with her will be October 25th.
 
So far this school year, Dan has been substitute teaching whenever he's been able to. Having this flexibility has been convenient for us, but Dan would really like to get another full-time teaching job...and we could really use the money. A social studies position has recently opened up at Eden Prairie High School (Dan's alma mater), which is pretty rare, so he applied for the job and has an interview Monday morning. Yay Hubby! He's going to give it his best and see where the road leads. The thought of our flexibility being gone totally scares me, but on the other hand the thought of having a fulfilled husband and not having to pinch pennies makes me elated! We know that God will lead us to whatever is right for us, so we really aren't fretting about this. Either way, we found a flexible, caring woman who is ready to care for Elijah in a secluded environment.

what's your plan?

We're hoping today is the peak of Elijah's sickness because he sure isn't feeling well. Dan took him to see Dr. Judy today and one bit of good news is that his O2 sats were back at 90%! However, when she listened to his lungs, they sounded wheezy, so we are now having to give him nebulizer treatments three times a day at home to open up those airways. He is very stuffed up. Both his nose and his chest are extremely junky. Tonight after eating most of his bottle he threw it all back up and was generally unhappy and agitated. He's working really hard for each breath right now...way more than usual. I feel so bad for him. I hate seeing him like this. We're praying for a better day tomorrow. We're also praying that this viral infection doesn't evolve into anything worse. Thankfully we have a great relationship with Dr. G and Dr. Judy so between the two, he'll be well taken care of this week.

I think I've caught whatever it is that Elijah has. I have a nice throbbing head and a sore throat this evening. Dan hasn't caught it yet, and I hope he doesn't. We all get our flu shots next week and it can't come soon enough!

A funny Tired Story for you. We've been thoroughly exhausted and getting very little sleep since Sunday. Last night at midnight I got up to sit with Elijah for a bit because he was crying and obviously uncomfortable. I was rocking him when Dan came into the room and said to me, "What's your plan?" Uhhhh.....my plan? I had no idea what he was talking about. Then he said, "Are you going to feed him breakfast?" I didn't understand why he was planning so far in advance and I was way too tired to respond, so we both just sat there silent for a bit. He left the room and did his morning ritual of mouthwash, getting dressed and turning the lights on downstairs for us. He came back upstairs and realized it was midnight. He actually thought it was 6am and that we were starting our day. We both had a good laugh about it in the morning. What's my plan....my plan is to get some sleep one of these days..

Recovering at Home

Warning: This post was written with one eye open and my brain shut off, the following words may or may not be coherent.

Elijah is doing pretty good dealing with his first cold. Overall his disposition has been amazingly good, considering what his poor little body is going through. Oh look, a sheep.
He's doing a little better today than yesterday, eating well and seeming pretty comfortable when he's awake/alert. The sleeping has been the most difficult part. With his coughing/congestion he's up a lot and crying with his sad yet cute little hoarse cry. We've been trying hard to keep him soothed and sleeping so he can get over this fast and get back to being his usual self. Yeah, soft pillows.
He's taking a nap right now, hopefully he'll get some solid rest in and have a good rest of the day.

hallucinating

I'm so tired that I don't even really remember writing that last post. Dan and I have slept 2 out of the last 30 hours, and Elijah hasn't slept much more than that. I think I was hallucinating in the ER. The screws on the back of the door were moving in circles!

We are finally home and Elijah is doing fine. He has his first cold with a lot of chest gunk/congestion. He sounds like Darth Vader when he breathes. His heart condition is making things more difficult because his body and heart are already working very hard but now everything is working extra extra hard (and hence the reason for the scary episode last night). The docs don't want to give him any medicine to treat this, so we basically just have to do the old-fashioned remedies to keep him comfortable and as gunk-free as possible: vaporizer, saline drops in the nose, propped up a bit in bed, etc... Nighttime will be the worst part since junk tends to settle in his chest while sleeping, so we'll be extra cautious tonight, as it's possible an episode like last night could happen again. They gave us the option of staying at the hospital overnight, but we're feeling comfortable enough to do things here and now I know that I don't have a problem calling 911 if need be! We're feeling confident that we won't have to go that route again (please God!). Tomorrow we have to follow up with Elijah's ped and cardiologist to make sure those oxygen levels are back where they should be. They were still a bit low when we left the hospital, but not low enough to keep us there.

Elijah is chugging down a bottle right now and then we ALL plan on taking a giant nap. I just pray the little man stays comfy enough to do that. He sure needs it. Through all this commotion, he has honestly been AMAZING!! He has been all smiles all night/morning/day. What a wonderful boy. I know I say that a lot, but really.....he amazes us more every day.

Pray for some sleep for us and for a gunk-free Elijah.

we're back

Well Elijah and Mommy got their first ambulance ride tonight, this morning, whatever time of day it is. We attempted to let him sleep a bit more at home and he woke up barely able to breathe. He started to turn blue and was somewhat unresponsive so we called 911. By the time the paramedics got there he was doing much better, but we still went in. I rode with him in the ambulance and Dan followed us in the car. Right now his O2 sats are low to mid 80's, which is low for him. We're waiting to hear what the doc thinks we should do. Gotta get back...more later...

This is why our boy can't get sick! His heart cannot handle it. :( This is the first time he's ever been sick, so it's hard to see.

Short hospital visit

We had to take Elijah to Children's last night. After being in bed for 2 hours, he woke up laboring really hard to breathe and sounding really congested. We didn't even bat an eye and ran him to the hospital right away. With his heart condition, we do not mess around with anything. Listening to him, I was a little worried about pneumonia, but thankfully his lungs looked and sounded clear, so that means he probably has a viral infection. Eli's O2 sats were on the low side for him, which would suggest that his heart function is a little strained, so we need to keep an eye on him these next couple days. We are going to call Dr. G in the morning to see what he suggests. For now, we are going on little to no sleep, propping Elijah between us in our bed so his congestion doesn't settle in his chest and so he can hopefully breathe a little easier. Right now Dan is sitting with him in the bathroom with the hot water running in an attempt to humidify and clear some of his gunk up. The ER doctor was hesitant to give him a prescription of any kind before talking to his cardiologist. It's amazing how simple things are never simple with a baby with a heart condition. Keeps us on our toes!

Anyway, please say a prayer for our man. He needs some good, uncongested rest. Also, we just wish for this not to be (or turn into) anything more serious. He was AMAZING in the hospital last night. He hadn't gotten hardly any sleep and was still so happy and cooperative. He flirted and smiled and giggled at all the doctors and nurses. We're so blessed to have such an amazing baby.

Ok, change of plans. Elijah is really struggling to breathe right now so we are headed back to the hospital. More later..

Cute pics and a Christmas wish

Elijah's new winter hat. Isn't it cute? Have I mentioned his desire to reach for EVERYTHING lately?



What a ham. You'd never guess that just minutes before this pic was taken, he was screaming his lungs out at the physical therapist's office, which also included back arching and giant tear drops. We had to leave after only 12 minutes into his visit.


Daddy's Gophers hat



Dan and I want to do something a little different for Christmas gifts this year. We're going to buy small gifts for our parents, and a small something for Elijah, but aside from that we'd like to take all the money we would have spent on gifts and donate it to an organization that is very important to us, The Children's Heart Foundation. We'd also like to ask that if you had planned on getting a gift for us (not that we we ever expect anything from anyone), that you hold off on getting us anything and/or make a donation to the CHF yourself. If there is ONE thing for us to be thankful for this Christmas it's medical knowledge/advancements, so we'd like to support the advancements that have helped and will continue to help our son and many other children.

"The goal of The Children's Heart Foundation is to bring health, hope and happiness to children impacted by congenital heart defects, the number one birth defect in the United States. We accomplish this goal by funding the most promising research to advance the diagnosis, treatment and prevention of congenital heart defects in children."

Some facts I grabbed off the CHF website:
This year almost 40,000 babies will be born with a congenital heart defect. 4,000 of them will not live to see their first birthday.
The cost for inpatient surgery to repair congenital heart defects exceeds $2.2 billion a year.
CHF has directed almost $2 million to 24 different congenital heart defect research projects.
CHF is the only organization strictly created to fund congenital heart defect research.

If you'd like to help out, click here. Thank you!!

Snook knows best

We consulted with our wonderful pediatrician, Dr. Judy Snook, tonight, and she gave us wonderful words of encouragement regarding Elijah's helmet. As most of you know, we've been having an internal struggle trying to decide if it is worth pursuing. We really trust Dr. Judy, so we called her out of desperation today. We asked her what she thought we should do, since she medically knows Eli so well. She said that if she had ever thought that he should get a helmet in the first place she would have said something to us (our physical therapist is the one who suggested it to us and the reason we sought out help). She also said that she has seen much worse cases and that Elijah's flat spot was very "mild," and not worth enduring major skin irritation and further emotional turmoil for. It was so good to hear her give us an actual opinion and not be vaguely supportive. We love our doctor and trust her completely and therefore have made a FINAL decision...

THE HELMET IS GONE!!!!

No offense Helmy, but good riddance! You have caused nothing but difficulty for us. We think you look very cute on our son, but we are happy to not put you on his head anymore. Rest in peace, you colorful little thing.

Funny new noise

Every day brings something new and fun with Elijah. Today he suddenly started making a kissy-type face, accompanied by a funny giggly noise that we just had to record and share with everyone. He's been doing it all day long. It cracks us up every time.



Random stuff: Dan and I were watching him play tonight and he is soooo good with his hands. He has very steady, confident hands. Maybe he'll be a heart surgeon! He's been a bit "off" lately because of his new teeth. They look so cute in his mouth. Tonight he ate his first cookie all by himself (well, sucked on his first cookie)! He looked like an old pro, like he had eaten a thousand cookies before. Today he got his first RSV shot of the season. Poor man didn't like that too much. And another first today--he didn't wake up till 6:45am (amazing!) and didn't go to sleep till 7:15pm (amazing!). Our next goal will be to attempt sleeping through the night. Aaaahhhh, can't wait for that! Or should I say, Dan can't wait for that. Ever since I've been back to work, my wonderful hubby has gotten up almost every night to feed Elijah. He's the middle-of-the-night guy and I'm the early morning gal.

Helmet update: We ditched out on our appointment today with the orthotist. Elijah's forehead is still discolored and peeling from wearing it 10 days ago (totally ridiculous if you ask me), so it's not like he would have been able to leave the office wearing it anyway. I think we may really be done with it. It's been a topic we haven't really discussed lately because we both want to pretend it doesn't exist. Unless I hear some sort of miraculous voice from God in the next few days, I'm pretty sure we're through. Yes, we feel a little guilty about that, but really...we started this whole process on August 29th! That's way too long when we have many other more important things to be dealing with. His head looks fine to us. It will probably be a tiny bit assymetrical, but you'll only be able to see it if you look closely.

Fun things

Well..................
That's actually about all I have to say about the helmet. Dan and I have nicely placed it in a safe place this week and we've avoided talking about it because we're both so irritated by Elijah's skin irritation (which is still present, by the way, after almost a week of not wearing it). We have agreed to hear Orthotist out on Monday at 3:30 to see what he says to encourage us to keep with it. We'll see.
 
On to more fun things....
As I mentioned last week, Elijah is now rolling over a lot! This is a good thing because this is what we've been working with him on for months, buuuut.......with his new ability, he now will not tolerate a single moment of tummy time. That sneaky baby. I have a feeling we're going to have one of those babies who walks before he crawls. If he continues to snub the time on his belly, crawling is going to take a while. He has been so funny lately and his personality is really starting to show. Feeding him his breakfast and dinner have become challenging these past few days. He is so enamored by...everything.....that he has a hard time concentrating on Mommy trying to put a spoonful of food in his mouth. He'll arch his back just to look up at the sticker/logo on his high chair that is right above his head. Well, it's not easy to feed a baby who is arching and looking toward the sky. I reposition him, thinking he'll forget about the sticker, and then he starts looking for it again. If I cover the sticker up with a blanket, he becomes obsessed with the straps holding him into the chair. He inspects every side of every strap very closely, while turning them in his hands. Again, can't feed a slumped baby who is looking straight down. Then I'll bring the bowl of food close to him to distract him and he tries to grab it and flip food everywhere. Now as I'm describing it, it does sound pretty cute. As I'm feeding him at 6am and trying to get ready for work and out the door, it's not so cute.
 
Elijah has two teeth now! His bottom front teeth are just poking through. So far his little body goes through a series of events about 48 hours before a tooth breaks through the gums. Saturday was the first time we experienced his body's Teething Ritual, and we got to relive it on Tuesday. First, he gets a little cranky, which isn't like him. Thankfully the crankiness is short-lived. Then his whole body gets really clammy. Then, after eating whichever bottle is next, he throws up. When this first happened we were a bit worried so we called a nurse and she said it was common for babies to get upset tummies because of the excess saliva they are swallowing. The first time he did this, WOW...he really puked! The aftermath was amazing. We're looking forward to many more teething experiences! :) Really though, those are the only things out of the ordinary. After each episode, he was fine. His sleep was a little broken a few nights last week, which we attributed to teething, but he's a total champ and shows no glaring signs of discomfort.
 
He's ALMOST sitting on his own now. I'm pretty excited for that day to come so we won't have to put him on his back (and head) every time we set him down (especially if this helmet thing doesn't pan out). I give it a few more weeks. He still "talks" a lot. He's constantly making some sort of noise. The only "word" he says still is "Aboo." I'm working hard on "Mama"!
 
We have a few appts here in the next few weeks, including cardio, ortho and flu/RSV shots, and then his big heart cath is on the 29th. We're so anxious to get that behind us! Just another hurdle. :) 

Oh, Dear Helmy, this may be goodbye....

We feel defeated by our little helmet friend right now. We learned that the issue may not be that it isn't fitting Elijah's head properly, it may just be that his skin is irritated by the material that the helmet is made of. If this is the case, then there are a few concerns: 1) After all that has been shaved off from the inside with the assumption that it was ill fitting, is wearing it going to do any good for his head right now?  2) Concern number one is moot since we don't want to risk Round 4 of serious skin irritation, so we'll either need to ditch it altogether or start the whole process over with a helmet made of a different material. I'm not sure why our orthotist, after all the problems we've been having, never brought skin irritation up as a possibility. A totally different doctor suggested this to us, so when we asked Orthotist about it yesterday, he confirmed that yes indeed, this could definitely be the case.......BUT to try another night with the helmet and to call in the morning to schedule another refitting. Wha...??? No thanks! Is God trying to tell us to set Helmy (and all future unborn helmets) down for good, or is He trying to tell us to persevere and be strong and get through this?? In all honesty, Elijah's head does not look that bad to us right now. Maybe it's just wishful thinking? 


 
On a good note, today I was given a couple good reminders about perspective. I was sorting through my work emails this morning and ran across a note I had sent to my boss the day I found out Elijah's 20-wk ultrasound was abnormal and that there was something wrong with his heart. That day was October 24, 2006--almost one year ago! Shortly after finding that email, I received the below daily passage from a friend. So I will take this as a sign that I should give thanks to God today for the richness we have in our lives.
 
Moving Through Darkness
The Places We Go

In life, most of us want things to go to the places we have envisioned ourselves going. We have plans and visions, some of them divinely inspired, that we want to see through to completion. We want to be happy, successful, and healthy, all of which are perfectly natural and perfectly human. So when life takes us to places we didn't consciously want to go, we often feel as if something has gone wrong, or we must have made a mistake somewhere along the line, or any number of other disheartening possibilities. This is just life's way of taking us to a place we need to go for reasons that go deeper than our own ability to reason. These hard knocks and trials are designed to shed light on our unconscious workings and deepen our experience of reality.

Often it takes something major to wake us up, to shake us loose from our ego's grip as it struggles to maintain an illusion of control. It is loss of control more than anything else that humbles us and enables us to see the big picture. It reminds us that the key to the universe lies in what we do not know, and what we do know is a small fraction of the great mystery in which we live. This awareness softens and lightens us, as we release our resistance to what is. Another gift gleaned from going to these seemingly undesirable places is that, in our response to difficulty, we can see all the patterns and unresolved emotional baggage that stand in the way of our unconditional joyfulness. Joy exists within us independently of whether things go our way or not. And when we don't feel it, we can trust that we will find it if we are willing to surrender to the situation, moving through it as we move through our difficult feelings.

We can take our inspiration from any fairy tale that finds its central character lost in a dark wood, frightened and alone. We know that the journey through the wood provides its own kind of beauty and richness. On the other side, we will emerge transformed, lighter and brighter, braver and more confident for having moved through that darkness.