Made it to KC & through pre-admission testing

Although I was wondering several times during testing if we were going to. The drive down was fine, we actually leave pretty close to the goal (wanted to leave from the school after picking the boys up at 4:10 but we were pulling outta town at 5:00) and got checked into the Ronald McDonald House (RMH) just after 8pm. This time we are staying at the Longfellow House and it's really nice, although our room is smaller. Isaac and Immanuel slept most of the way and after a late dinner at RMH, and a quick visit with granny & grandpa, we went to bed and actually slept alright. Then we got up this morning, got ready and headed to Children's Mercy at 10:00 a.m. Granny & grandpa kept the boys at RMH.

Testing was tough on mommy & Immanuel. First they checked his blood pressure O2 sats, height & weight. Then we filled out paperwork & answered a bunch of questions, stuck a bag to him to catch urine, met with the two different surgery nurses - Kathi & Kitty, then anesthesia, then a research nurse, then Dr. O'Brien, then bloodwork, then chest x-rays, and finally 3 hours later we were free to leave. Sigh. The poor baby was so picked on, prodded and over it by the end he was very emotional for several hours afterwards & you could just tell he'd had a tough morning. The bloodwork was the worst! He had to be held down on a table, screaming like crazy, while they tried to get enough blood for what they needed to do. The one good thing out of it all is that Dr. O'Brien wants him to be in a research study for CHDs, 1 of about 40, that they will track for 10 years, do histories on us - mom, dad & baby, bloodwork on us, take tissues from his surgery, etc., (and nothing will hurt him) to try to learn more about what causes this, so I felt very honored to be able to be a part of maybe learning more, finding a cure, or just getting to be part of the research that I am now advocating for anyway.

It was also pretty overwhelming just to hear all the details, to have to listen to the risks, and to sign off on it all. I'm still not really letting myself go too far down that road so I think I'm hanging in there pretty well. I really like Dr. O'Brien - he was warm, kind, friendly, spoke immediately to Immanuel, and didn't seem at all surgeon "untouchable" ish, but yet did seem very education & experienced - I'm very comfortable with him.

I was very excited to get to meet Melissa, Maccoy & Cayne! They were at CMH for Cayne's appointment so Immanuel & I went over to say hello. Although this was our first face-to-face meeting, it feels like we're old friends, so that was really great. The twins are SO cute and Maccoy stole my heart right away when we gave me a smile & was "talking" to his heart buddy almost immediately! Cayne was sleeping but was just as cute! They're all so stinkin cute!

Well, I guess that's enough for tonight. Hopefully I'll add more or edit in the future but for tonight I need to get my rest. The good Lord knows we have a big, big day ahead of us tomorrow.

Pray for Immanuel, I know God has a plan for this special little boy. We know he's a strong, brave, amazing little guy and he's going to do great tomorrow. We trust you completely. We turn him over to You, Lord, give him & us strength, peace, comfort & faith and may he feel You holding him in Your hands especially tomorrow when we are not able to hold him. God Bless Immanuel & mend his heart & deliver him back into our loving arms, where we always give praise & glory to You! Amen!!

St. Patrick's Day!

Just thought I'd share some of our fun today. We started the day off with green milk and green, shamrock-shaped pancakes, complete with one four-leaf clover! Isaac was NOT feeling the green food and refused to eat it until I finally talked him into just trying it, at which time he realized it didn't taste funny so he then ate it and enjoyed the humor. Isaac also said that, "Isaiah has on a baby poop green shirt but mine is real green." Too funny!

The baby also turned 8 months old today and it's been a day of many achievements! Earlier I saw him on all fours move both knees and I was almost ready to say he's crawling. Well, as the day progressed there is no doubt - it's offical as of today - this boy is crawling! It's not speedy but he is definitely up on all fours, moving both knees and both hands without falling and while moving forward so I think that is success! He also went from hands and knees to sitting up on his bottom for the first time ever later this afternoon! Finally, he crawled to the coffee table, wanted my netbook, reached up, got himself to kneeling & holding the coffee table ledge, and with my hands around his back slightly to catch him if needed, he pushed up to his feet so that he was standing at the coffee table and able to bang on my keyboard - he was so happy and I was so proud!

A few other milestones he's reached lately in honor of his 8 months is that in the last couple of days he's started clapping and if you sing pat-a-cake he'll clap. He's also saying dadadada a lot and even seems to say it when daddy walks in so I'm starting to think it's intentional. Lastly, if you wave at him he will sometimes wave his arm back.

Later in the day we got our green on, I got lots of cleaning/picking up done, got some paperwork done, overall felt like we got a lot accomplished, which has been rare lately, then Jaq came over to play with the boys, and as I type this, baby finally in bed, I'm enjoying my one and only green beer with lime in honor of the holiday. I haven't had many beers at all so this is rare but delish!

In other news, the baby's surgery is one week away. His health has been good and everything seems to be on track. I'm still freaked a bit but I know everything will be fine. Another heart mom I met here in town has a son a month younger than Immanuel with TOF and he had his repair 3/10 and was discharged 3/16! It's been so encouraging to follow his journey online through his caring bridge page. He did remarkably well and I can only pray ours goes as nicely as his did - I know it will, God willing! His mom also sent me a very helpful email with tips and suggestions for what to bring, etc., which I think is so awesome and has been very helpful as I plan, pack & prepare.

All in all it's been a good, green day. I'm so proud of my baby boy and all he achieved today! Gotta love & cherish these good days when I don't worry about things, get stuff done, and just enjoy my family!!! :0)

10 days away

I'm just feeling a little anxiety over the fact that Immanuel's surgery is 10 days from today. It's been a rough day as I awoke with a pounding headache that only got worse as the day went on. I took him for his 8 month pictures at JC Penney's and we did ones with all 3 boys without their shirts to document their scar-free chests before Immanuel has surgery. I had to leave early as my headache got worse and ended up throwing up two times as the day went on so Iwas never able to take anything. Finally tonight I felt better, ate an apple, kept it down and took some meds, which have made me feel much better. I still have a slight headache but nothing compared to earlier. The pictures turned out great and the boys were so awesome today!! Isaiah really helped to care for Immanuel as I didn't feel well and daddy was at work. Isaac got me crackers & ginger ale, and Immanuel was just a good baby as always. I KNOW everything is going to be fine and yet with each day that goes by my anxiety goes up a notch. I look forward to having him repaired, to knowing his heart is working better, and to knowing this is behind us more than now, but it's still hard. We also have a heart friend, Max, that lives in Wichtia, also has TOF, and had his repair 3/10/10 in Philadelphia. I've been keeping up with him and his progress on his caring bridge site and he's doing so great, and yet seeing exactly what he's going through had made it both easier and harder knowing that is almost EXACTLY what Immanuel will face in just 10 short days. Sigh....it's necessary, I know that, it's going to be fine, I have faith in that, I just can't say I'll ever be exactly happy to send my baby into open heart surgery.

The Jammies Ordeal

So yesterday I had a breakdown. A fairly big one. Bigger than I've had in awhile. And over the stupidest thing...jammies. I know, it's really just that the jammies were my trigger, but today I can laugh about it, thank God.

So here's a little back story... Last week Children's Mercy called on 2/23 & proposed Immanuel's surgery date be 3/23 but she was going to check with the surgeon to see if he'd do it on 3/22 to make it easier on us with regard to traveling. She never got back with me. I called on 2/25 to follow up, the surgeon said no to 3/22, she'd given away the 3/23 date (nice), and so we officially set the date for 3/25/10. A mended heart for my son is definitely the best birthday gift I could ever hope for this year...unless they could just give me his troubles, but since that can't happen I'll take the mended heart in him. Anyway, the scheduling was hard. Something about that made it so official. Then starts the planning. Planning for work, school, relatives, etc. My mom lost it when she heard we had a date. Then I get this letter & packet of information from the hospital about how to get ready for the surgery & what to expect a few days ago. I started reading it as I waited for the boys to get out of school but I started to choke up and just put it away. I didn't want to be crying when the boys got in the van & scare them.

That night I read it. It was informative & helpful & yet depressing and scary. Again, all these things are making it so real. Two things in the letter really got to me....one was that they'll give us special soap to use on the baby the night before the surgery. What? Ugh, that feels yucky, whatever it is. The other was the recommendation to bring comfortable, loose-fitting clothes/jammies from home to promote wellness rather than illness. Okay. So I send an email to the CHD group for recommendations as to what kind of jammies from those that have been there done that. That almost made it worse because some suggested jammies with snaps so the cords could go out the holes between the snaps. Others suggested jammies without snaps because the x-rays techs didn't like the metal snaps.

So because I had a coupon for babies-r-us that was expiring I decided to go get him some special jammies for surgery. Once there I found three pairs that kind of fit the bill. As I sat there in the store holding him against me in the sling, he was sleepy and drifting off as I sang "You are my Sunshine," I patted his back and looked over the three pair of jammies I'd selected. One pair was your standard snap-up jammies and a definite yes. The second pair was a top & bottom but the top had two metal snaps to make the neck opening larger to pull over your head. The third pair was a top and bottom with no snaps but the top has to be pulled over the head as is. Then I stood there, holding my precious, sleeping baby, trying to visualize him in the hospital after surgery...should we get the metal snaps one, what about the x-rays, if I get the other pull over ones, will he be able to sit up & have a shirt pulled over his head or will that hurt him? At that point I just lost it and started crying in the store thinking of what my baby is about to endure. I bought all three and just got outta there, crying the entire way home. I cried off and on the next few hours.

My sister-in-law called during that time and let me vent a bit, which was very needed. When Shock got home I showed him the jammies and thankfully rather than responding as he normally would with the "it's just jammies, I don't care, Kendra" reply he gave me his opinion immediately and liked the two with snaps. I thanked him for just helping and not asking questions and then returned what I called my "emotional buy" jammies.

Thankfully since then I have calmed down and I do realize that everything is going to be fine...I've always known that. When he was first diagnosed it was pretty hard but shortly thereafter I just had peace about it because of my faith I knew that God has a plan for him, and while I may not understand, it's not for me to understand, I just need to have faith & trust Him, which I do, and that has done wonders for me. I've think I've been rather stoic up until recently. After reflecting on the jammies ordeal I'm realzing that as the date gets closer, and I keep checking things off the to-do list before surgery, things are just becoming more and more real, which is causing me to feel more anxiety. I explained to my dad that it's like as the surgery nears my feelings and emotions are bubbling to the surface more and more, and that with any little crack in my exterrior those emotions could come pouring out. Occassionally I think it's okay to go there, even cathardic, but for hte most part I'm trying very hard not to dwell in that sad place because I *know* he's going to be fine, he's strong, and our Lord is with him always. I just hate that he has to go through this at all, that he'll be in pain, and that I can't take that away for him.

I am so thankful for our awesome family and friends! You all are proving to be such a great support system - whether it's prayers, love, calls, offers to help in anyway, or simply a place to vent, it's been invaluable and I hope you all know how much you mean to us and how much we love you.

P.S. Above you'll see pictures of the pairs of infamous jammies I got for him. :0)