Quick week!
Thursday, November 12, 2009
Elijah got his H1N1 vaccination on Tuesday! YAY!
He is almost completely back to his usual spunky self after having a heart cath on Monday. Tuesday and Wednesday were sluggish, still-puffy and fluid-eliminating days for him. He woke up both of those mornings with saturated pajamas and bedding. I felt like a horrible mom, but he did not complain once through the night and this has never happened before. We checked him a few times throughout the night last night and he was dry this morning, thankfully. I guess his body had some extra fluid to eliminate for a couple days!
We are heading to our "It takes two to talk" class tonight. Elijah gets to hang out in a room full of toys and kids while Dan and I will be next door learning about ways to effectively communicate with him. Every time we leave at the end of the night, Elijah yells, "BYE FENZ!" about 97 times. He's saying goodbye to his friends! :)
Remember my story about Bobby the Bird from Jungle Junction/physical therapy? Well Elijah's awesome therapists ran across a miniature Bobby the Bird beanie bag and they gave it to him yesterday to take home with him. He was SO EXCITED. He looked at it and said, "BABY BOBBY!?" and then looked down at the big version of Bobby (who still comes with him wherever he goes when he's at therapy) and said, "DADDY BOBBY!" Baby Bobby slept with him last night and this morning when I got Elijah out of bed he gave me a concerned look and said, "Daddy Bobby." I wonder if Baby Bobby is missing his daddy?
I almost don't even believe what I'm about to say because it seems like it just cannot be true, but we get Dan ALL WEEKEND! It has been a long summer/fall of him working most weekends, so I plan to cherish my weekend time with him for these next few months.
That's all for now! Thank you a ton, all of you who sent up prayers for our little boy earlier this week.
Posted by The Portas 5:02 PM 4 comments Links to this post
A post-cath letter to my Elijah
Tuesday, November 10, 2009
Dear Elijah,
AAaaaaaaaaahhhh. That's me breathing a huge sigh of relief about being done with your sixth heart cath. Once again, I am so glad to have another thing behind us and once again, I AM SO PROUD OF YOU, ELIJAH.
Yesterday morning as we sat with you in the pre-op area way before the sun was up, I was able to see a side of you that I have never seen before. For the first time ever, you did not cry when the nurse checked your oxygen saturations, your blood pressure and your temperature. Daddy and I shot looks of happy confusion across the room at each other because normally you cry through all of that. You are growing up!
You were very friendly with the nurses and doctors who came in to check on you and get you ready for surgery, but that is nothing new at all. You played hard in that little room of ours, driving your car around, blowing bubbles and even sitting on a blanket on the floor for a foodless "picnic."
When it was time to take you back to the cath lab, we decided that Daddy would be the one going into the room with you. I'm sorry I didn't go in with you, too, but I hope you understand that it is really difficult for me to see you being put under anesthesia. I did it once and it scared me to pieces!
I squeezed you extra tight in my arms all the way to the cath lab, and you knew something strange was going on because you kept saying, "Home!" into my ear. It broke my heart, Elijah, and that is what I cried about after I handed you to Daddy once we arrived at the OR door. You became very afraid when the doctors opened the doors and you could see into the big scary room, so I quickly gave you a big hug and handed you over so you wouldn't be scared for very long.
Daddy and I waited in our usual waiting room while Dr. G did his heart cath magic on you. We received a few update phone calls from one of your nurses and every time we talked to her she said you were doing great. You always do!
The procedure went a lot more quickly than we expected. It only lasted three hours and Dr. G didn't need to do much "work" on your heart like he thought he might need to. This was great news!
The pressures in the right side of your heart are about double that of a "normal" heart, but that is exactly where they were at during your cath one year ago! This is amazing and totally unexpected. The stent in your pulmonary artery (that Dr. Moga placed during your second open heart surgery) is definitely creating a narrowing of that artery, but not to a degree that we should be immediately concerned. It is something we will keep an eye on when you get your echocardiograms in the future. Your bovine valve (also placed by Dr. M during your last OHS) is a bit narrowed at the top, but is otherwise functioning perfectly and is also showing no immediate concerns.
These are the two main things that will need to be fixed eventually during another open heart surgery. We thought that after this cath, OHS #3 would be on the horizon, but it is not! Everything is growing fairly well inside of you, so we just continue to wait. The farther out the next surgery is, the better! We don't even go back to see Dr. G for another six months! We really didn't expect this level of good news at all, so we were all (Dr. G included) very very pleased with the cath results.
Once you woke up from your surgery, the nurses wheeled you in your bed over to us and we met you in the hallway. You were very grumpy (totally understandable) and scared and DID NOT want to be in a hospital bed. You didn't stop saying, "UPUPUPUP!" until we got you into a room and had you on Daddy's lap.
That is when we noticed that you were really struggling to breathe, way more than we have ever seen before after a heart cath. You had stridor (which you typically get with croup) and your belly was retracting pretty badly, showing that your lungs were working extra hard. After two hours of this, and crying non-stop on top of it, your anesthesiologist ordered a racemic epi neb and an IV dose of steroids. This helped you almost immediately.
A short while later you started to calm down. We spent those first few hours doing everything we could think of to soothe you but nothing worked. You wanted OUT OF THERE and anything less than that was not acceptable! Once you realized that we weren't going anywhere, and once you felt a little bit better, you laid in Daddy's (or my) lap and dozed and/or watched tv.
I thought it was funny that during your most stressful times (whenever a nurse was touching you, or even within ten feet of you), you called out for "Dushin," which is your word for "Junction," which is your current favorite tv show. You didn't want Mama or Daddy, but you did want DUSHIN!
Every time I asked you if you wanted anything, you would say "NO!" (said without the N) and shake your head.
"Do you want apple juice?"
"OOhh!"
"Do you want to lay in bed?"
"OOhh!"
"Do you want a thousand gifts from Santa?"
"OOhh!"
One time, though, one time, you said YES to something! Do you know what it was?
"Elijah, do you want to lay on Mama's lap?"
"Ess!"
That made me feel sooo good. Even though you called for your favorite tv show during your very scared and stressful moments, at least you said YES to wanting to be close to me. I hope that never changes.
And speaking of that, you literally barely fit on my lap anymore, which makes me very sad. As much as you insisted that you be held yesterday, I just don't know what we'll do when you are no longer holdable. :( I don't like to think about that. I am just so happy that being close to us is comforting to you.
Luckily we didn't have to spend the night at the hospital, so we all went home together in the evening. You were so happy to be home (us too)! You gobbled up a ton of food from not having eaten in almost 24 hours, and then went straight to sleep.
Unfortunately, some of your airway issues from earlier in the day came back once you had been sleeping for a while. Daddy and I got you out of bed and gave you another neb and put you back to sleep. My worried mama brain didn't want to be too far away from you, so I decided to sleep on the floor in your bedroom so I could hear your breathing and know if you needed help.
You had no more issues through the rest of the night and this morning you were doing great! You have a little cough and a bit of a hoarse voice, but that will go away quickly. We also expect you to have a slight fever for a while because of the five coils Dr. G put inside of you. I forgot to mention that! You had some (more) arteries (MAPCAs) supplying duplicate bloodflow to your lungs, so Dr. G coiled them off. You now have around 20 metal coils dancing around inside of you! Crazy!
So, our day at the hospital is done, but my emotions are out of control, as they always are The Day After. I really think that the older you get, the harder all of this gets. You understand a lot more now than you ever have before, so we can see genuine fear in your eyes and that is not fun at all.
There was one point yesterday when your nurse was in the room and you were on Daddy's lap and you just stopped crying and closed your eyes as tight as you possibly could. It was like you were wishing all the bad things away and pretending that you were at home in the safety of your bed. I will never forget that moment because it broke my heart. I wish you never had to experience the things you have had to and will have to experience and that you never had to wish yourself to another place.
You are such a brave, strong boy, and Daddy and I are so proud of you. I hope you always know that! We love you very much.
Love, Mama
Posted by The Portas 8:12 PM 13 comments Links to this post
Labels: heart cath
Cath done!
Monday, November 09, 2009
We were able to come home today after Elijah's heart cath, thankfully. Elijah has a hoarse throat and a few battle wounds, but seems otherwise unfazed by today's experience. I am going to finish feeding him his dinner that he is DEVOURING and then relax a bit before going to bed myself. Tomorrow I will give a more detailed update on the day! Overall it went really well. Thanks for your prayers!
Posted by The Portas 6:06 PM 10 comments Links to this post
Labels: heart cath
Cath tomorrow
Sunday, November 08, 2009
One fun thing came from the weekend: the couple of trips we made outside because of the beautiful weather. I can't believe how nice it is in November! 
Elijah's heart cath starts at 7:45 tomorrow morning. I don't think I'm going to bring our computer to the hospital, but I will make a few tweets throughout the day. If you would like to know how things are going before we get home (tomorrow night? Tuesday?), you can follow us there. We would truly appreciate any prayers you would be willing to send up for a smooth heart cath. Thank you!
Posted by The Portas 3:00 PM 19 comments Links to this post
Labels: heart cath, photos
Elijah funnies
Thursday, November 05, 2009
One of the reasons I keep up on this blog is so I can write down things Elijah is doing so I can always remember them. Here are a few things that have been making us laugh lately..
I have mentioned that Elijah has been really interested in walking lately. One of his favorite things to do when Dan and I are both home is to walk back and forth between the two of us. He is getting SO GOOD at taking steps on his own! I tried to get it on video, but he shuts down when the pressure of the video camera is on him. Anyway, I think it is so cute how he says, "Walk 'a Daddy!" when I have a hold of him and "Walk 'a Mama!" when Dan has him. Then he says, "Ready, set, GO!" and takes off. His little bobble is so stinkin' cute. I could just eat that kid up.
There is a new show on Disney called Jungle Junction and Elijah is IN LOVE WITH THIS SHOW. Seriously. In love! He asks to watch it all the time: "'Atch dunshin' pease, Mama?" How can I say no to that? Lately as I am putting him to bed we chat about all of the characters on the show. He loves talking about the Hippo Bus and ElleVan the elephant and Bobby the Bird.
Speaking of Bobby the Bird! Last week at PT, his therapists got out a bunch of beanie bag animals for Elijah to play with. One of them was a bird that looked exactly like Bobby from Jungle Junction. In his most excited voice, he exclaimed, "BOBBY!! Oh Bobby!" and started hugging and kissing him. Bobby then had to accompany him throughout the entire session. It was super cute. This week at PT as he did his standard walk in his walker down to the play room when we first got there, he started screaming out for Bobby: "Boooobbbbbbbbbyyyyyyyy!!??" So again, Bobby stayed with him through the rest of the session. When the session was over, he looked at Bobby and said in a very sad voice, "Bye Bobby."
Elijah has been such a polite little man lately. He says, "'Ank 'oo, Mama," and "'Ank 'oo, Daddy," all the time and it makes my heart melt.
When we ask Elijah something that his answer is "no" to, he says "Ohhh" as he gives us a squinty, furrow-browed look and shakes his head.
He has been very interested in his stuffed animals lately. I think his most recent additions, Mama and Baby Elephant and Mama and Baby Giraffe (from the SD Zoo) have sparked this, perhaps? He snuggles and loves on his animals all the time (and plays music for them), when he has never given them the time of day before.
Elijah has been exploring different emotions recently. He likes to say, "HAPPY!" as he gives us a huge happy face. Then it's, "sad," as he gives us a very pathetic and sad-looking face. Then, "MAD!" as he pounds a fist on the table.
I mentioned this on Facebook already, but Elijah has been really into counting. Every night when we go upstairs to read books before bed we count as he is climbing up the stairs. He can count pretty well (with only one or two mistakes) all the way to 30. Except the end of it goes, "twenty-eight, twenty-nine, TWENTY-TEN!!!" Dan and I (whoever is following him up the stairs) tickle him after every fifth number, so FIVE!, TEN!, FIFTEEN!, TWENTY!, TWENTY-FIVE!, and TWENTY-TEN! are very exciting numbers. Sometimes in the middle of dinner or at another random time throughout the day, he will shout out, "TEN!!" and start squealing like he is being tickled, of course so one of us (preferably Dan) will start tickling him.
p.s. H1N1 vaccinations are IN IN IN! They are saving Elijah a dose for next Tuesday since his cardiologist wants him to wait till after his heart cath to get it.
Kind of a side note here. Elijah has not been eating very well lately, which is very unusual for him. It has me a little bit worried, but we are hoping it is just a 2-year-old phase that will pass. If you feel inclined, please pray about this!
Posted by The Portas 5:44 PM 6 comments Links to this post
Labels: counting, eating, funnies, walking
Dreams
Wednesday, November 04, 2009
Do you like Elijah's unintentional Zac Efron hair 'do?
Around 3:00 this morning, Elijah woke up screaming bloody murder. It was one of those alarming screams that would send any parent flying out of bed in about a half a second. When I got to him, he was on his hands and knees in his crib and he was trembling. He stopped screaming once I picked him up, but continued to shake and whimper for a bit as I rocked him back to sleep. Obviously he was having some sort of nightmare or night terror. It makes me so sad to think that bad thoughts are already running through his little two-year-old brain. I keep wondering what he could have been dreaming about. Was Larry the Cucumber attacking him with a hairbrush? Was a doctor chasing him with an enormous needle?
At least I got to rock him back to sleep, which is something I haven't done in a while. He's getting so big that it's hard to get us both situated comfortably in the rocking chair. Elijah, stop growing up!!
I guess the bad dreams shouldn't surprise me since Dan and I are both crazy vivid dreamers. I can still remember some bad dreams I had as a very little girl in vivid detail. It looks like Elijah is following in my footsteps. 
This has been happening in our house a lot lately. Elijah loves playing his "'tar" while singing to his animal friends (who are very good listeners).
Chattin' on the phone while checking some things out on the computer.
p.s. H1N1 vaccinations STILL not available. PATIENCEPATIENCEPATIENCEPATIENCE.
Posted by The Portas 6:17 PM 9 comments Links to this post
Still photoless
Monday, November 02, 2009
I have been so bad about taking pictures lately (there is a reason for that...I will explain at a later date), and I always feel bad publishing photoless posts. Our computer has also been out of commission, so that's another reason why we have been fairly absent.
Will you pray with us this week for another HEALTHY week for Elijah? His heart cath is a week from today, so his health is very important leading up to that. I really hate to wish time away, but I am eager to be beyond November 9th. Sometimes I wish they would spring hospitalizations/procedures on us so we wouldn't have time to worry.
We didn't really celebrate Halloween this year, aside from eating a ton of candy and treats (and continuing to do so). I think Elijah is still too young to enjoy it and I was getting tired of buying $20+ costumes that he wore for three minutes. Next year!
Elijah is doing great! We are SO THANKFUL for his good health lately. He never showed a single symptom from being exposed to the flu a few weeks ago (thank you, Tamiflu). He is talking more and more every day and he is showing a ton of interest in walking. We're at least a couple months away from full-fledged independent walking, but it is so nice to see this new confidence that he has.
I'll end for now with a funny story from last night. I was sitting in the chair in Elijah's room with him before bed and he had his head resting on my shoulder. In the middle of saying prayers he started fake snoring. I said, "What are you doing, silly?" and he laughed like a crazy man and kept doing it. I love this age. It's so much fun!
Posted by The Portas 4:50 PM 8 comments Links to this post
Labels: development, health, heart cath, holidays, speech, walking
