Monday, August 31, 2009

And he takes 28 CC's!!

Wow! did he ever! Kenny is just chuggin right Well as fast as he can be. I would like to have him home now though, but do understand the need to have him where he's at. I was so proud to see that he ate so much for me though. I'm hoping when I go back later today that he'll do at least half of that. I know that he's working hard, and just a little guy.

Sunday, August 30, 2009

Rest peacefully Ireland

I am so angered to have to write another post to say another baby has lost her battle with CDH. It's sooooo not fair!!! I know life is not fair, but really! This is rediculas. I have been corresponding with Chanda, her mom, for awhile now. I will probably never meet her or her family, although I wish I could. They are such wonderful people! These awful things seem to happen to these wonderful people and it's not right! I know that Chanda and her husband Mike did all of the research and new all of the odds...etc. We all do. Please pray for them today. I can't even imagine how hard it is for them.

Saturday, August 29, 2009

Kristen's hearing

With all of the commotion with the new little one here, I have forgotten about Kristen's last hearing test. Well we test her left ear still due to the fact that it's not implanted and from being on ECMO she may still have progressive hearing loss in her ear. I have been on a quest for a bi-lateral implant on her left side for over a year now. I feel that listening like there is an ear plug in our one ear is an unacceptable way of listening. How does one isolate sounds??!! We don't hand out one hearing aid to someone who has hearing loss in both ears. We give them two! To help them get speech and environmental sounds.

So anyways, now that we have not been able to get reliable results in the sound booth with just behaviours, we will send Kristen for a sedated ABR. Just another appointment in our world! So now we wait!

Make the transfer happen!

So Kenny was transfered to a hospital closer to home yesterday! YAY! Twenty minute drive on way instead of 45-60!!! And I even got to give him his FIRST bottle!!! He took 12 mls! First time!!! It was nice to know that I got to do it! I have never given any of my kids the bottle first! It's always been the nurse around when they make that decision. I will post pic's later, I just left the camera in the

Wednesday, August 26, 2009

Daddy having snuggles for the first time!

Today Gary suprized me when I was on my way into the hospital to visit Kenny and told me that he was on his way too! Gary hasn't held him yet!!! So they had some nice snuggle time and his stats were just great the whole time.

It's weird. When Joe was born I was devestated that he couldn't come home right away. I didn't clearly understand everything that a preemie needed. I got that he needed to do some things, but I felt that the dr's kept him there a couple of days longer than they needed to. And then we had Kristen! CDH monster!! And wow! Did that ever put things into perspective. I didn't want to rush too much, but I wanted her better. It wasn't the same as a preemie thing. Then Courtney came and she had her short stay. I was totally fine with that and she had her short little stay at the Special Care Nursery. And now Kenneth. Well he's the earliest that I've delivered, and you would think that I'd be freaking out, and sad, and worried. But no. I'm none of those. I know that he's fine, and just growing to be healthy to come home. He had a bit of Cpap, and some TPN feeds and now he's just got monitor's and an NG tube. Not that I want to make his situation less than it is, but after CDH and ECMO!!! This feels like a breeze! I know that this is just a whif in the moment of time, and I will get him home for a lifetime! He's doing so well, now we just need him to get bigger and I think he'll start bottle feeds this weekend sometime or next week, and we'll go from there!!!

Tuesday, August 25, 2009

No more support!

Kenny has now become a man of few No more IV, and no more CPAP. He just has his feeding tube and the monitors. And they are already asking which hospitals would be good to send him to closer to home for me!! I expected the respitory support for 2 weeks, but he's just gone on his own thing, and said forget it!!!

Monday, August 24, 2009

Under the lights!

Because of the jaundice, Kenny ended up under the lights for awhile. They also had trouble finding IV low and behold...he got the NICU hair cut with the nice IV cap! Hopefully they can get his feeds up to the 30 mls every three hours in the next day or so, and he won't need the TPN.

Sunday, August 23, 2009

Holding Kenny

I got to the hospital for a visit with Kenny, and the nurse asked if I wanted to hold him!! Who would say no!!?? Of course! He's doing well with CPAP and he's going to go under the lights for jaundice today...not much else he's doing!

Now on CPAP

Kenny's been moved from conventional ventilation to CPap and doing well. He's been on room air for most of the time. He's gone up a bit here and there with O2, but only for short periods of time. It's now been a good 36 hours without the extra oxygen. He's a little bit yellow from jaundice, but hey, they're keeping an eye on him. Now we just need some growth, and no more respitory support, and then feeds, and then home. But nothing that we can't handle. It's just hard to get to visit him having the distance, and three other small kids at home. It's a 45 minute drive one way to Children's hospital. Once he doesn't need the respitory support they can transport him to a closer hospital.

Saturday, August 22, 2009

We welcome Kenneth Alan Taylor

So my little guy just couldn't hang on!!! On Thursday morning, I lost my plug, and my hard labour began at 11:30am. I still wasn't even sure that it was true labour, as I've been having regular braxton hick's since 20 weeks that were 3-5 minutes apart.

So I called Gary at 11:15, called Taisha to come and watch the kids and by 11:30 I had Jolene on her way as well and was on the phone with 911 knowing that I wouldn't be able to drive myself. Very quickly did everything happen. My neighbor saw the ambulance and came rushing over. I passed her on the stairs and said people are on their way to watch the kids, send Gary to Langley, and I hopped on the stretcher and away we went. I had the urge to push on the way but held out until we were on the mat ward in Langley.

Just as they were going to move me from the stretcher to the bed, I pushed! And opps, there went all my water! Everywhere. And then the contractions stopped. No more pressure on the uterus until it shank down again. They checked me, and said I feel cord. I knew immediatly that ment C-section. Gary came in got into scrubs, and they took me to the OR.

At 1:38 PM, August 20, 2009, weighing in at 4 lbs 11oz Kenneth Alan Taylor made his debut! He was born at 32 weeks and 4 days. So he's going to spend sometime at the hospital...but with our history of kids...hey he's not doing to badly. Joe spent 19 days, Kristen 3 months, Courtney 6 we're used to this.

I do want him home though, and I can't wait until that happens. We like to do things big around!

Wednesday, August 19, 2009

Ireland Rose

Chanda and Mike have welcomed their CHERUB into this world today. They begin thier CDH journey with her! I ask that everyone prays that she is strong and the DR's can allow her to go home quickly with her brother Tristan! I have been cyber 'chatting' with Chanda for the last couple of months...and love to read her blog. She is so honest in her feelings and what's happening. Nothing is sugar coated, and there is anger, fear, hope, excitement in all of her updates. I felt the same way when I was pregnant with Kristen. I just didn't do a blog or journal thing. I do regret that I think looking back it would have been an important outlet for emotions and feelings. Please check out Ireland's blog, and keep on praying!!

Wednesday, August 12, 2009

Prenatal appointment

So I'm officially into my 31 week now! WOW does time ever fly fast. I'm starting to feel like I need to sleep all of the time. But of course I can't due to the energy of the other three animals that I care for daily...just kidding. It's just my kids! I am measuring a cool 39 weeks! WOW! And I tell you I feel it! I have been talking to the kids about the 'baby' and he's in my tummy. Joe's kinda getting it, and Kristen, not so much. Well Courtney, my smart alek of a toddler, points at daddy's bare tummy, and say's while signing 'baby'! I almost died laughing! I'm just not used to kids saying things in my home so early. Joe and Kristen were/are so speech delayed that one forgets what's supposed to happen when! But who can blame the kid for picking it up so quickly. She was going to two speech therapy sessions a week for most of her life! And it wasn't even for her!!! Kristen is starting to do some really good pointing and is even using spontanous sign!! Just a few, but hey...I'll take whatever I can get! School starts in another few weeks for the kids, and I'm excited and sad! They can't stay my babies forever now can they??!!

Saturday, August 8, 2009

Baby Beal

I am sad to announce that baby Jackson has earned his angel wings today. I can't even imagine how hard this is for his parents. CDH is so unheard of but so common! I wish that there was more understanding of why!!??!! Who??!! and How come??!! It's so hard for me to 'get' why some are lucky and other's not so much. These children put up such fights. If you want to read thier blog I have posted thier link here for you... Please pray for this young family in such a hard time!

Thursday, August 6, 2009

Not too much exciting around here!

It's sure been nice not having all of the running around that we usually do during the school year. It's even nicer, because being as big as my tummy is growing would have made that a lot harder. Joe is doing well. We just got his speech and language assessment finished, and I'm so proud of him! When we started a year and a half ago, his speech and language was at a 12 mth - 18 mth level. Well 18 mths later, he's at a 3 -3.5 year old level! In only 18 mths! He has worked so hard! I'm so proud of him, and can't wait to see how well he continues to do.

Kristen has also made some expressive language gains. She's starting to point, with intent, and make vocalizations when appropriate for no. And she's also retaining a couple of signs. She points at peoples feet now, and signs shoes! She pointed at my pop and then me, and then yelled at me with intent that she wanted some! She's copying counting 1-3!! And signing it too! I can't wait for Sept to start when she gets more school and that focus started!

And Courtney! Well she's just a typical little kid! And so outgoing! It's so different for me to watch. I smile and kinda wonder what Kristen and Joe would have been like if they didn't have their challenges when they were little like her. I don't love them any less, but sometimes get sad when I think at how much harder they have had to work to get to where they are. Courtney has a expressive language of about 15-20 words, and she also uses about 5 signs. Simply amazing to me!

I wonder what this next little fella is going to be like. We've been calling him Shawn for right now. I'm pretty sure that that will be his name, but of course we may meet him and decide that that just doesn't work for him. He's an active little fella. And gets more active when I eat. Just like his Daddy, and

I'm now 30 weeks and am starting to get nervous to make it to 32 weeks, and then 34 weeks. I'll be more comfy at 34 weeks if he decides that he's had enough in there. I'd prefer 36 weeks, as I'd like to know what it is like to leave the hospital at the same time as my baby. I do know that he would survive right now, but there would be the typical preemie complications. I'd just like to avoid that. I'd like to be given a break here and there once in awhile...and please don't think that that comment was feeling sorry for myself. I would never change my kids or my life for anything in the world. But sometimes it can be hard. And that's just he truth. I guess that there is more going on around here than I orignially figured!

Monday, August 3, 2009

Long weekend camping

I feel like I don't update my blog that often. I think that it's because of the summer, and the fact that we have nothing on the agenda like during the school year. It's kinda nice actually to have nothing 'scheduled'. We went camping this last weekend. It was quite nice, and relaxing. Sometimes it's not, depending on what the kids have to do while we're away. But this time was nice. We went to Ferndale, and did some cross border shopping while we were there. My favorite past Joe finally got comfortable enough in the water to SWIM with water wings on! I am so proud of him! We had trouble even getting him to leave the steps when we got there on Thurs nite!