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.

ARGGGggg

Well....it looks like Elijah made a cute post this morning. What a smart baby.

I can't believe I'm typing this, but Elijah woke up this morning with another red mark from Helmy. We will be heading back to the orthotist yet again next week. This time the red mark is on the left side of his forehead and goes down to his temple/ear.




And not only is our baby smart enough to speak, write and type, but he's also gotten wise in another way. Just today, he has shown us that he knows when we're about to put him on his belly and he physically protests. Every time I put him on his belly this morning, he rolled right over onto his back. I suppose it's good....at least he's rolling consistently by himself now. For his morning nap we put him on his belly in his crib and when we came to get him up, he was on his back! Even after all these months of trying to get him used to his belly, he still hates it.

Elijah's heart cath was postponed and now it's on October 29th. G-man said he expected to be doing a lot of "work" and didn't have enough time alloted for him on the 3rd. We're a little bummed because we were looking forward to getting it out of the way, but there's not much we can do. The 29th it shall be!

After my first full week of work, I'm trying to cherish every moment with both of my boys. I better go squeeze them now. Here's a cute picture of Elijah's milk coma from the other night:

100 things about me!

Hey everyone, it's Elijah here. This is the first time I've written on my own blog! For those of you who would like to know me a bit better, I've made a fun list of 100 things all about ME! Enjoy! My daddy is wonderful! Grunt, grunt......squeak......Aboo!!!!!

1. I’m 7 1/2 months old.
2. I weigh 17.5 lbs.
3. I love peas and sweet potatoes.
4. I love all food, but those are my two favorites.
5. I can eat two jars of food and four bottles a day!
6. I love to eat.
7. I’m chubby.
8. Mommy tells me that’s a good thing.
9. It means I’m healthy.
10. My thighs are especially chunky and round.
11. I have a chubby neck, too.
12. I like to blow spit bubbles.
13. I started making kissy lips this week.
14. It makes me look like a fish.
15. Mommy and Daddy laugh hard when I do it.
16. I’m not sure what color my eyes are.
17. They are grey, blue and brown all at once.
18. I have to wear a helmet.
19. It makes my head sweaty and red.
20. Mommy and Daddy are thinking about throwing it away.
21. I’ve been practicing rolling over.
22. I’ve done it a few times all on my own.
23. I don’t like being on my tummy.
24. Tummy time is hard work!
25. I smile a lot.
26. My giggles are so cute.
27. I poop a lot!
28. The other day, Mommy and Daddy changed 5 poopy diapers!
29. When I poop, I grunt. Loud!
30. It makes Mommy and Daddy giggle.
31. I just started liking baths.
32. I splash my arms and legs in the water and giggle and squeal.
33. Mom and Dad have to wash my hair every night because it gets so dirty from Helmy.
34. My mom and dad are weird and silly.
35. I think they could get their own reality show.
36. They tell me all the time that I’m a very special little baby.
37. My mom has a lot of nicknames for me.
38. She calls me Peanut, Sweet Pea, Munchkinhead, Little Man, Big Boy, Pumpkin Butt, Chunky Monkey, Sweetie Pie, Handsome Man, Honeybunch, Chubster and lots of other things.
39. Daddy called me Chunko-butt the other day. What does that mean? Does that mean I’m fat?
40. Mom and Dad do a lot of work with me to get me strong.
41. I practice sitting, rolling, standing, pushing up, and I even do sit-ups.
42. I guess my surgery slowed down some of my progress.
43. My surgeon’s name is Dr. Moga.
44. His voice sounds like Kermit the Frog.
45. He’s very smart and nice and did a very good job fixing my heart.
46. Dr. Gremmels is my cardiologist.
47. Mom and Dad call him “G-man.”
48. He is so nice and he likes to say, “Goodgood” a lot, like it’s one word.
49. Daddy thinks he’s a sharp dresser.
50. I started going to daycare.
51. Carrie and Mike watch me. They are so nice!
52. There are a bunch of other kids there. Mostly boys.
53. They can all walk and crawl.
54. I will be doing those things very soon, too!
55. Mom and Dad read me lots of books.
56. Mommy knows the Tooth Book by heart and recites it in her sleep.
57. We always read in the loft before I go to bed.
58. Then either Mom or Dad holds me in their arms and bounces on an exercise ball.
59. That puts me right to sleep.
60. I have three favorite toys right now: my rattle, my toy cell phone and my little mirror.
61. I like to hold my rattle and pound it on my leg like it’s a tambourine.
62. I’m very good with my hands!
63. Ever since I was born, Mom and Dad have said that I’m going to do something with my hands when I grow up.
64. That and my voice.
65. I love to make noise.
66. I’m constantly grunting, talking or gurgling.
67. I love to sleep and I need lots of it.
68. If I don’t get enough, I’m a very grumpy boy.
69. Tiredness is the only thing that makes me cry besides pain.
70. I have always slept well at night.
71. From Day 1, I knew that bedtime was bedtime and I never cry in the night except to eat.
72. Then I go right back to sleep!
73. I don’t want to go back to the hospital.
74. They poke me with needles there.
75. Mommy says I have to go back to get better. Just a few more times.
76. My heart isn’t all fixed yet.
77. Dr. Moga will fix the rest next year.
78. I love to be outside.
79. I especially love stroller rides.
80. Mom and Dad say I have a fondness for the outdoors.
81. Daddy wants to teach me to hunt.
82. I make lots of funny faces.
83. Two second before I cry, I make a giant frown and furrow my brow and then I say, “Baaaaaa” and the tears start flowing.
84. It’s actually really cute.
85. I love it when Mommy sings songs to me.
86. The Itsy Bitsy Spider is my favorite.
87. I also love it when she makes animal noises.
88. The one that makes me smile the biggest is the sheep noise. BBa-aaa-a-aaa-ahhhh!
89. I have eight different doctors.
90. That’s a lot of people looking out for me.
91. My mommy says I’m pretty because I have big eyes and long eyelashes.
92. My lashes are longer than hers.
93. I hear a lot that I’m a handsome boy.
94. I will get chased by girls on the playground.
95. I have two teeth that are about to poke through my gums!
96. I can’t reach my feet because my body is too long.
97. I think I might be tall when I grow up.
98. I love playing with the tags on toys more than the toys themselves.
99. I just got a new high chair!
100. I started holding my own bottle this week.

Strong and Steady

The kissy lips he's been making lately. Funny man.

Elijah's helmet is re-re-refitted now! Dan brought him back to the orthotist yesterday and got a little more shaved off from the inside of Helmy so hopefully no more fittings will be necessary in the next few weeks. So once again, we are weaning him into wearing it full-time. How long has this been going on? Oh yeah, two and a half weeks, that's right...  We hope to have him wearing it full-time again by this weekend. 
 
I know we sound very hostile towards Helmy, the poor guy, but we've definitely dealt with worse. Yes, Helmy is a bit of an annoyance and yes he smells like vinegar, B.O. and pickles, but when we stop and look at the big picture, we almost embrace that colorful little 8-oz. ball of plastic and foam. Eight months ago, we didn't even know if Elijah would survive the pregnancy. Once we saw his sweet face, we didn't know if he'd be capable of much, with all the strikes that were against him. Once he showed us that he was capable of almost everything any "normal" baby was capable of, we weren't sure how he'd do during and after that first surgery. He flew through that like a champ and now....now look at him! He's strong, he's chubby, he eats well, he's thriving, he's happy, he's smart, he's cute, he has an amazing little personality and he's just a little miracle man! This helmet thing is peanuts to him....and to us. He's our strong and steady man who isn't phased by a thing. We keep reminding ourselves that we are amazingly blessed and that this helmet hurdle is miniscule.
 
Elijah's heart cath is next week already! In fact, a week from today. Please say some prayers that it will go smoothly. I'm a bit nervous about it, based on our history with heart caths and the Short Stay Unit at Children's.
 
p.s. Elijah just yanked on my sleeve and told me he has something to write on his blog...??!?!? I didn't realize he knew how to type, much less form words or sentences, so I'll be curious to see what he thinks he's going to do. Hmmmm.

Helmet Update

This whole helmet thing is not going as smoothly as we'd hoped for. Elijah has adjusted to wearing it but after we got back to him wearing it while sleeping we noticed that his forhead was once again being rubbed wrong and looking sunburned.
We'll call the orthotist again today and see if we can get in right away and hopefully get the helmet fitting correctly. The helmet has already been kicked across the room so if things don't work out soon it may accidentally end up in the trash.

ps. Megan goes back to work full time today, the boys will have to try to survive without wonderful Mommy for a few days :(

pps. A favorite from our large 6-mo. photo collection:

Setback

We've had a bit of a setback with Helmy (my lil' pet name for Elijah's helmet). The first night he wore it all through the night, Saturday, it wasn't kind to his head. He woke up Sunday with a dark red welt-like mark across his forehead. Arrgggghhh...I really wanted to throw that thing in a dumpster, but I took a deep breath and nicely set it down. We kept Helmy off until yesterday when we could get in to see the orthotist, who looked shocked at what it had done to his head. Mr. Orthotist reshaped the inside of the helmet so it hopefully won't happen again. So here we go, at square one again. We are to re-start wearing the helmet very slowly and he should be wearing it full-time again by the weekend. I had it on him for a bit this morning and it appears to be sliding all over the place now! Really?? If we have further major issues, I may revisit the dumpster idea. Elijah is such a trooper and nothing bothers him. Even with a raw forehead, he was happy as a clam!

p.s. Who's the cute little helmet man?

The decision is....

Yes! We will have a little helmethead rolling around here for the next few months. We did a lot of thinking about this and it feels right in our hearts to keep going with the helmet. While we had serious doubts and concerns about going forward with it, it just doesn't feel right to stop. We may have to work harder to get him the physical therapy he needs, but we're up for that challenge. And besides, how could we say no to something that looks soooo cute on him?

Tonight we took Elijah to his physical therapy visit and he worked on rolling. He rolled over for us the other day, but hasn't done it since. That's going to be our main goal for this next week--training his muscles to roll roll roll. He's so close so much of the time, so I give it just a few more weeks till he's doing it regularly. Now that he has his helmet, putting him on his back isn't such a no-no (no more flat spot management! yay!). His sitting is getting a lot better, too. He sits very well supported now (no more bobblehead), but if we let go of him he plops forward. His tummy time has been great and he's lifting his head and chest comfortably now, but doesn't have much longevity. He'll hold himself up for a few seconds and then he'll just lie down and chill. Silly boy.

Eli is still quite squeaky and wheezy, which is a concern to Mommy, but none of his doctors have seemed worried at all about it. His heart cath on 10/3 may tell us something....at least I hope so. It would be nice to have a reason for it all, instead of just hearing the standard, "I'm not sure of the cause. Maybe he'll grow out of it?"

Elijah has been introduced to the world of daycare this week! It's a bit strange for me being back at work, but in a way, it's kind of nice having a routine again. Dan has been able to be home with him a few days this week, but the other days Elijah has gone to Carrie and Mike's and he seems to do great there! He definitely loves people, so that helps out a lot with this transition. Slowly we'll get into even more of a routine and as subbing picks up for Dan, Elijah will get to spend more time with Carrie and Mike and will get to know the eight other kids that they watch (there's a total of 8 boys there! yikes!). It'll be fun watching him progress, as he interacts with the other kids and watches them crawling and walking. He's the youngest one there, so we're hoping he'll be motivated to keep up!

A Little Help

Megan and I are going back and forth about this whole helmet thing. Granted it's only the first day, but as expected Elijah hates it and screams like a Lemming who has foolishly followed the Lemming in front of him off the edge of a cliff. If it were just that, we could press on because the first few days are always the toughest and he'd get used to it eventually. Our main concern is that his neck muscle development and range of motion will be affected and essentially put on hold. We didn't fully realize how much impact the helmet would have on those things until we saw how the helmet affected his range of motion and movement. We've worked very hard to try to get him caught up and he's still quite a ways behind. That and the fact that we've had a few people comment on how they couldn't notice the flat spot have us second guessing our choice.
It comes down to this: Is an unnoticeable flat spot that is not a medical concern worth 4-5 months of helmet time and even more delayed development? We just want what's best for him and if pushing through this first week of torture is what is best we'll do it without question. We just aren't sure what's best, I'd really hate to see him not rolling over/sitting up/crawling until he's a year old. Is a perfectly round noggin worth those developmental delays? Personally, my noggin is not in the best shape...inside and out...but I seem to do okay.
Basically, we're leaning towards not using the helmet and wondering what other people would do in our shoes, please give us your thoughts?

ps. I'm a married man and therefore allowed to say such things as the following: Megan is SEXXXXY and I Loooooove smooching her!

pps. Check out Elijah's 6-mo. photos on our Shutterfly acct (link to right). He's sooo cute.

Here's a couple pics of the helmet man, he's okay at first but then gradually becomes a beast!

New Routines

Today was an eventful/stressful/weird day for the Porta clan. It was Megan's first day back at work and the two boys had to find a way to survive at home alone. Luckily Elijah took some good naps and made the day easy for dad. In the afternoon we all took a trip to see the Orthotist and Elijah got to try on his helmet for the first time. He did not like it...much like an adult salmon swimming upstream for miles just to give birth, only to reach the final jump and land into a grizzly bear's mouth...basically, lots of screaming and back arching. After a few tries and a short nap (we were there awhile) the helmet fit good enough for Ma and Pa to practice putting it on and taking it off.
Tomorrow is Day 1 and he'll gradually begin to wear the helmet for the next 5 days until he is wearing 23 hours a day!
Going into the appointment the plan was to throw the helmet out the window of the car while driving home (Megan's idea) buuuut he looks so danged cute in that little helmet that we decided to keep it...and the fact that it will help make his noggin more evenly shaped is icing on the cake.
This is a minor glitch in the face of his other difficulties, but in the long run it will be the best thing for him....especially when he's wearing a football helmet and obliterating quarterbacks like his dad used to....or at least used to dream of.

We promised a picture and we'll post some of him in the helmet tomorrow. These pictures are of the helmet and casting of what his head will look like after he's done wearing it (the blue part is the part that needs to be reshaped and as you can see is quite big and why we decided to not throw the helmet out the window of the car).

ps. Megan is the hottest Mama EVER!

Out and about, and a heart update

I'll get to the heart update but first we have some cute pics to share from our fun family road trip we took this weekend. We got in the car and took a spontaneous trip to Duluth and then to Stillwater. Elijah was such a good baby. He slept very well in the hotel rooms and he loved all the time we spent outdoors.


Our first stop--Duluth


We walked along this path by the river in Stillwater about 50 times. Elijah loves his stroller rides.


Look at those big, pretty eyes. He has longer lashes than I do!


Checking out the sports section after his breakfast bottle.

Elijah had a cardiology appointment on Friday and it went well. His oxygen sats ran right around 90%, which is just a touch high for him and may indicate too much bloodflow to his lungs. He needs to get another heart cath to see exactly how things are working since surgery, so we scheduled that for October 3rd. Dr. Gremmels will go in through a vein in his leg and up into his heart to get a good look. The last two heart caths Elijah had were merely to take pictures and get an idea of how blood was flowing, so they were pretty simple procedures. This one will probably entail either a widening or tying off of an artery, depending on what the doctor finds. (Dr. Megan Porta here believes that there will need to be a coiling/tying off of an artery.) Because of this, it's a more complicated and time-consuming procedure than the last two and he'll have to be put on anesthesia and may even need to stay overnight. This cath will also give us a much better idea about when his next open heart surgery will be. Dr. G's guess was that it will be somewhere around a year from now. I don't like adding drama when describing what Elijah goes through, so I apologize for the following. The last heart cath he got was not fun for any of us. Elijah had breathing issues (i.e., forgetting to breathe) after the procedure; the nurses poked him all over his little body as they tried (and failed) to find a vein for an IV and made Mommy want to punch each one of them, five nurses and ten tries later; his oxygen sats dropped into a low, scary range for a few hours post-surgery; the nurses in the Short Stay wing must be the lowest on the food chain because they were not very nice, knowledgeable and/or attentive. I'm praying this time will be much more smooth.

Another thing Dr. G mentioned on Friday was that Elijah's heart is enlarged due to it working extra hard. It will be good to get the total repair done next year so his heart doesn't have to work quite so hard anymore. We also increased his Lasix dose a bit, since he's gained 4 lbs since his last visit.

Tomorrow Elijah gets his new helmet! He's going to look so cute. We'll get some pics posted soon so you can see his cool, crazy colored design.

Thanks for checking in on us. As always, we appreciate the support!

Chubby thighs

I knew Elijah's thighs were getting chunkier, but I had no idea he would weigh 16-1/2 lbs at his 6-month check-up. It's no wonder my arms and shoulders have been hurting so much lately. He is now in the 50th percentile for height and weight! He has always been around the 5th percentile, so this is a dramatic jump up the charts for him. This Friday is his big cardiology appt, so we'll hopefully have more heart news after that visit.

Some exciting news--Elijah rolled over for the first time yesterday! Dan and I were both watching him play on his tummy, which he has been tolerating a bit more lately, and plop...over he went onto his back. We both started cheering and clapping and Eli didn't know what to think of all the commotion. He's such a sweet little pumpkin.


Snoozing in my arms...look at the chub on that thigh! Love it!

Helmet

We just got back from Elijah's appointment with the orthotist, and he does indeed need to wear a helmet for his plagiocephaly. Based on the measurements that were taken, he falls within the Moderate range for needing orthotic help. The orthotist strongly suggested that we do it and I wasn't about to argue. They took a plaster mold of his head today and he didn't like that so much. In fact, I've never seen him cry so hard before. He cried so hard that he threw up green beans all over the doctor! We'll head back on September 10th to get the helmet fitted, which will be custom made based on his molds taken today. He will need to wear it 23 hours per day for 4-5 months. That sounds like a long time, but I'm sure he'll get used to it quickly, as will we. We even got to pick out the design that will go on the helmet. I figured we may as well go all out and get the craziest design they had. The design is called "Tornado" and has multi-colored swirls. The doctor said, "Oh! No one has ever chosen that design before!" Then I guess that makes Elijah pretty cool, huh? This isn't exactly what we were hoping for, but we most definitely want the best for our baby and with all that he's been through and has yet to go through, it is the least of our concerns. He'll be the cutest little helmethead ever!

Gotta go wash all the dried plaster out of his double chins now...

6 Months Old

Today Elijah is 6 months old! Time is so strange. It's hard to believe our baby is 6 months old already, yet it feels like we've been through soooo much in that time and that February 20th was eons ago. We are so proud of our little man. He's been through a lot and he is such an amazing boy.

Update on medical: I'll be heading back to work on September 10th, so it is my mission to get Elijah as far along as possible in gross motor development before he goes to daycare. He has finally started to lift his head off the floor, but only for a few seconds at a time. We'll take that! It's progress. He still isn't rolling over, but he is close. His sitting is getting much better (with support from us) and his head doesn't bobble around hardly at all anymore. We have an appointment with an orthotist to get a consultation on the plagiocephaly. I'm anxious to get the helmet on him (so we can get it off!) if that's the route we have to go. Next week is his 6-mo. check, and the following week is his cardiology check, and in between there are physical therapy appointments and lots of physical therapy with Mommy and Daddy at home. He's still pretty squeaky when he breathes, but who knows where that is coming from (all these specialists don't!).


Look! Head is off the ground!


Tumbling action shot, on the way down from a successful push-up


Sitting up with Daddy's help

1st percentile??

We had another PT visit today and Elijah was MAD. He was a tired boy and screamed through the entire thing, so not much progress was made. His PT gave me a printed assessment of where she thinks Elijah is at developmentally. He is right on schedule with cognitive and fine motor skills, but is in less than the 1st percentile for gross motor skills (neck strength, arm strength, rolling over, pushing himself up, etc...). I knew his surgery had caused him to be behind, but I had no idea he was this far behind. We have been working with him SO HARD every single day. It is a constant, tiring job, so it's frustrating to know that he still has such a long way to go. His surgery and recovery came at a time when it was really important for him to be on his belly, about the 3-month mark. Oh well, we will keep working and eventually we'll get him caught up! Soon here I have to go back to work, so I'm hoping we can do some major catching up before then so we won't have to expect our daycare provider to do all this work for us.

His flat spot is better, but still flat. Depending on what Eli's pediatrician says next week, we may be heading to the plastic surgeon to get fitted for a helmet.

Elijah has been so aware and alert lately. He does something new every single day. Yesterday he figured out how to blow peas out of his mouth and spit them all over Mommy. Today he starting saying, "Bob," over and over. Hmmmm....I wonder who Bob is? The last friend he couldn't stop talking about was, "Aboo." It's so fun to see him grow so quickly and to see what each new day brings. He's such an amazing little baby.

Giggling man

We got Elijah's sweet little giggle on video tonight. He has such a cute squeal. You have to listen for it through the grunting..

Back with our man

Here's a pic of our naked little man right before we left for vacation. We got him all cleaned up for Auntie Lissa.



We had an amazing time in Vegas! We ate great food, went on some fun rides, won some money gambling and had a great time meeting friends. We had a difficult time the first little while we were there because we really missed Elijah (mostly me, I was really crabby), but once we relaxed by the pool and realized this was VACATION, it got much better. Some highlights: rides at Stratosphere, sushi at RA, dinner at FIX (excellent prime rib), dancing at Light, meeting our "heart" friends Mike, Terri and Matthew for dinner, staying at Bellagio and enjoying their beautiful fountains and pools, winning $400+ gambling (for low-stakes people like us, this is huge!) and most importantly, enjoying some alone husband-wife time. Here are some pics.....


View of one of Bellagio's amazing pools


Dan and me under archway between the pools


Daytime fountain view from our room


Nighttime fountain view from room

Vegas!

I have a bit of Mommy guilt and angst about leaving our boy for a couple days, but I have to say that it has been a trying year and Dan and I are very excited about our upcoming trip. We are going to relax in the pool (in the very hot Vegas sun), eat some good food and take in the busy Las Vegas atmosphere (and also meet fellow heart parents Terri and Mike!). We fly in late Thursday and get home Sunday afternoon, so we will only have two full days away from the cutest baby on the planet. He will be in excellent hands. My sister is gracious enough to watch him, so he'll be having a great time at Auntie Lissa's house.

At today's physical therapy visit, Elijah's PT suggested looking into getting him fit for a plagiocephaly helmet. We were really hoping to take care of his giant flat spot without having to go that route. We've been doing everything in our power to get him lying on the other side of his head. I think we'll wait till his 6-mo. check, which is coming up soon, and see what his pediatrician thinks. I know that some parents say no to the helmet and attempt correction themselves, but honestly, if it's best for our man to get it, then that's what we'll do. It's definitely not the end of the world and things could be much much worse! If he does get it, it sounds like he'd have to wear it for ~3-4 months.

Elijah is still squeaky and wheezy, but I think it might be progressively getting better. It's hard to say, though, because I'm around him constantly. We have another check-up with his cardiologist in a few weeks so I'll feel good once that gets here and we can get him looked over pretty thoroughly. His napping has been AMAZING and his neck is slowly but surely getting stronger. We work so hard with him every day so he can "catch up." We're so proud of all the hard work he's done lately. He's awesome.

Ok, well we have to get ready for our trip in between poopy diapers, applesauce and physical therapy. I CAN'T BELIEVE WE'RE ACTUALLY GOING ON A TRIP!

Chunky Monkey

I don't mean to detract from the news on Baby Isaac (see previous post...he's doing great!), but these pics are just too cute not to post. Thanks, suite7 girls, for the shirt. Elijah is a BV Beaver, too!

Good news about Baby Isaac!

Baby Isaac had his heart surgery last night and is in the Stanford ICU doing well. Yaayy! I'm so glad they were finally able to get him in for surgery so he and his family could start recovering and moving forward. Kathy posted post-op pics of him on their website and he looks great!

Yay Baby Isaac, way to go...

Random stuff

Our little bobblehead, sitting in his chair...



We went outside to grill the other night and I said, "Uhhh....move slowly away from the wall and don't freak out.." (even though I was the only one freaking out.) A bat! I've never seen a bat around our house before!


Soooo Dan killed it. Sorry you little baby bat....(and sorry to all of you hurt by this, but seriously, it's a BAT!)



Elijah was a crabby guy tonight. I don't think he slept very well last night, so he was a little extra tired. He was unwilling to smile for us, but we got some good pics of his juicy double chin/neck...




And finally, we've uploaded video to youtube that we've had since Elijah was home from the hospital back in March. Here are some of our (many) faves. I can't believe how little our man was just a few short months ago. What a little peanut! If you haven't had the pleasure of hearing his trademark Roaring, you can hear it now!

Bridge catastrophe, a postponed surgery & an appendectomy

We luckily were not near Mpls when the bridge collapsed last night, but we're sooo sad about this. It's tragic. As far as we know, all of our friends and families are safe. We've had a few friends tell us that they had driven over the bridge within an hour of the collapse. That hits way too close to home.

Baby Isaac's surgery was postponed yesterday, so hopefully they can fit him in today. Dr. Hanley had an emergency surgery in the ICU to tend to, so that's why Isaac got bumped.

My sweet little niece Emma had her appendix removed last night. I'm so glad they caught it before it ruptured. Thankfully she is doing well today and doesn't have a fever anymore and is expected to go home by 11:00 this morning. Get well, sweet little girl! We'll see you soon!

I'm hugging my boys a little extra tight today.