Sunday, January 24, 2010

Super Mom...

Super LAZY that is! Zach was at work today & I was up a good chunk of the night with Jake, so my parenting skills were at their finest today! For breakfast the kids had pancakes. Lunch, Gracie had ice cream, Jake had string cheese and chocolate chip cookies. Oh ya and cheesy poofs. Jake and I took 2 naps today while Gracie, well she did what ever she wanted. Which actually worked out well because she watched movie after movie after movie today! I was so tired from all my napping that I didn't have it in me to slave over the stove (oh who am I kidding, we would have eaten sandwiches)...we ordered pizza for dinner. I figured I should do something somewhat responsible tonight so I made Gracie take a bath...she had been in her jammies all day. But I screwed that up too by not paying attention to how hot the bath water was. She didn't seem to mind for about the first 10 minutes. She eventually got herself out and went and sat on the couch naked...steaming, beat red. She went to her room when she cooled off a little and put undies on and put herself to bed. I am a rock star parent today! LOL...funny thing is, it was kind of a fun day!

Here are a few posts from old e mails...I've decided not to add the ones that don't say much, so if you see a gap in days...we were sitting watching a baby on a vent!

Best April Fool's Day EVER

I just couldn't contain myself and I am writing my "nightly" letter now! Jake has done so well for the last 3 days that he is almost completely off the vent and breathing on his own. They have not actually taken the ET tube out yet because we want to make sure he has the bronchoscope done before they extubate him, and the pulm team can not do the scope until tomorrow morning. So they have the settings as low as they can go w/o taking him off the vent all together. As anxious as I am to see how he will do off the vent, I'm ok with them taking their time! We still have no idea when we will be home, it just depends on what they see when they do the scope and how he does off the vent. We know we will be here for a few more days, but are expecting to be here for another 3-7 days. We don't want to set ourselves up to get out of here soon to be let down, so we are we are just telling ourselves to plan on another week. We have our hotel room until Friday, so I called and had that extended another 5 days after Friday, with the hope that we won't be here that long.

Thank you everyone for your support. Our family could not have made it thru this with out each and every single one of you. Please continue to think and pray for us, as we are not out of here yet! But I do have to say...THIS HAS BEEN THE BEST APRIL FOOLS DAY EVER!!!

It's weird to read back on these notes and knowing that this ride is no where near over. This was day 8 of 28! You will start feeling our frustration soon!

Nice Try

What a day. By noon today we had held our breath so many times that we were both about to pass out. We got here today around 8:30am, like every morning, with pure excitement that today is the day that Jakey is getting extubated and we get to hold and kiss on our little man. We were also super excited that he is FINALLY getting his bronch done today & we couldn't wait to see the results of that! With in 15 minutes of us getting here the pulm team came in and did the scope...which showed exactly what we expected. He has a moderate case of tracheomalacia (a floppy trach) that is fixed with time. His body just needs time for it to grow and get stronger. Jake's cardiologist has been saying for months that he believed that his hypertension was being caused by a airway obstruction. We asked the pulm dr after the scope if he believed that was the case and he said he didn't believe that it was causing it, but was probably contributing to it. So...back to square one with the hypertension. But all in all the scope went well and didn't really find anything alarming. Then we did rounds and the big topic was extubation! We were all smiling, all the nurses were super excited to see his face w/o tubes in it...just a exciting time. Before it all started the dr sat down with us and made sure to make it very clear that kids do not always tolerate being extubated on the first, second, or even third time...sometimes, and to be prepared to see him get intubated again. He said he didn't see that there would be a problem because he has been doing so well for the last 3 days, but you just never know until the tube is out and he his breathing on his own. So about 20 doctors, nurses, RT's...piled into the room and out came the tube. They immediately put a cpap mask on him because the scope reveled that he needs extra pressure support to help keep his right air way open. He did good for about 5 minutes, then he started getting restless and his o2 sats tanked. 15 minutes later he was intubated again. The doctor came out into the waiting room to talk to us and tell us that Jake probably just needed a little more time to let his lungs fully heal up from the pneumonia and that we will make him comfortable and try again in a few days. As you can guess we are feeling pretty blue right now because we had such high hopes that today would be another wonderful day and that we would get to hold and snuggle our little guy...but that will have to wait a few more days...maybe. So that is were we sit for now!

New Week...New Baby

Remember how a few days ago I wrote that we have been holding our breath so much that we were about to pass out? we got to exhale. Jakey got extubated at about 12:30pm and so far has been doing exactly as we had hoped. As soon as they pulled the tube they put him on a cpap pressure support machine to help keep his airways open while he tries to recover. The doctor said the next 4-6 hours will really tell us if this is going to work or not. But so far he looks perfect! He's resting comfortably (tong hanging out and all), his O2 sats are at 100% (with a little help, but not much), and his bp is 88/41 (that's good for him). So with any luck, tonight's posting will be just as happy and we will have more great news to share!

On another note, we had a GREAT time with Gracie this weekend. We did lots of swimming at the hotel swimming pool, played, painted pictures, went for walks. It was nice. We also got to go to the IMAX theater at the Science Center and see Monsters vs. Aliens in 3D! It was way cool! Grace spent the first 20 minutes with her eyes covered, but loved every minute after that! She even ate popcorn for the first time (she usually says "icky" and pushes it away). After the movie we went to the little "carnival" under the space needle and went on a few rides. She is definitely my little dare devil. We had a great time! Zach was thanking God every second that he is too big for those rides...she gets her carnival ride enjoyment from me! Here are a few pics of our weekend!

And then there was this note! I am pretty impressed, looking back...this is the only time I really had a pitty party melt down! And it only lasted a few hours! Rereading it though...puts me right back in that place. I remember exactly how I felt that day! Thank you for the e mail Krista!!

A Star?

A great friend mine sent me a really nice e mail today and in it she called me a "star". I sat here crying & this was my response...

Oh I don't feel like a star today. Or any day for that matter, because yes, we are here doing what any parent would be doing. But today I am not even that. Today I am having a pitty party. Today I walked in and could tell from the second I saw him that he had not slept again last night. But the weird part is, despite not sleeping for 3 days, he's really happy and playful. Which makes it so hard to just sit here and watch. I can watch him from home. In my jammies, playing with Gracie, holding my baby. I am so bitter today (for lack of better words)...tired of all my friends from home telling me to "hang in there", that they are thinking about us, that they wish we could come home soon. Hearing about everyone's Easter plans and inviting us to come over...IF WE ARE HOME. Today just seems like the day that I should burry my head in a pillow and ignore the world...but I'm a mom, with a sick baby, so the day must go on. Some how I just need to find my attitude adjustment and kick my own butt into gear.

So if there are not responses to e mails or texts today, please don't take it personally...just having a bad day.


nicole said...

I laughed out loud when I read about the 'hot tub' incident. I too have done that with Tegon...didn't realize the water was TOO hot until I got him out and his little body was beet red. He didn't seem to mind either! :)

kschei said...

I remember those emails back and forth like it was yesterday... Jules, I cannot believe it was almost a year ago. Just being with you while I was home last week was refreshing. You are a STAR and you've been chosen from the beginning to be Jake's Mom - what an honor. He's absolutely incredible.