Happy Happy Happy

Ian has gained some weight :-) Enough that the drs decided to try just oral feeds (of a special formula - neocate) for a few days :-) Yay! While waiting for Ian's nurse to unhook his TPN IV we snapped a few happy pictures. Then when he was free of the IV pole we headed to the playroom for a while, and then we went for a walk. When we returned from our walk around the hospital we noticed a present in Ian's room with Ian's name on it - A couple of Dr's had left Ian a gift!! Thank-you so much!!

So Excited!! 

Dylan says it's easy to walk in heels... 

Hanging out in the playroom 

At the hospital a little longer...

Last post Ian was recovering from surgery - which was going well, and also he was recovering from pneumonia. He was still in the NICU, on pain meds, hadn't pooped, or eaten. Since then he's over the pneumonia, his incision is pretty much healed, he's off pain meds, he's pooping, and eating. Ian was transferred out of the NICU and now has 1/2 a room, his own tv, a big crib, a bed for a parent if one of us would like to sleep there, a rocking chair, a swing, and a whole bunch of adoring nurses waiting for their turn to hold our little cutie (heart) There is also a play room down the hall that we can use when we come with the kids. We can also walk around the hospital with Ian, which is super nice cuz Ian is getting older and doesn't really like looking at the same 4 walls (or rails of his crib...) all the time.

At the end of last week, beginning of this week it was looking more and more like Ian could come home. After talking to the dr. on Monday, he said if Ian gained that day he could come home Tuesday! We were so excited! Ian could probably come home before Christmas!!
 Ian didn't gain.
They checked his sodium levels, they were at 14 (normal is 40) They started him on a sodium supplement. (Ian was on a sodium supplement when he was at home for a month) Tuesday's weight showed no gain again. Actually over the last 5 day's he's lost 10 grams.
 Wednesday the dr. and dietitian came to talk to me again. They decided to put a picc line in Ian yesterday so they can put Ian back on TPN (iv nutrition) because, we know he gains quite well when on TPN, and for his health he REALLY needs to gain some weight. The plan is to put a central line in tomorrow for the TPN, if there is room in the OR for him. The central line goes right into his heart.
Because Ian gains well on TPN, and not with just oral feeds, they are quite sure he's having an absorption issue - but what is causing that issue, they aren't sure. It could just be that Ian's intestines are inflamed from having 3 surgery's in the last few months (The first surgery the dr. found very sick and grey intestines (we weren't sure at that time that Ian would live because of how they looked).
 His body may just be taking longer to heal, and hopefully soon Ian is able to absorb and digest nutrients on his own. If that is the case Ian will be in the hospital for a few more weeks to get him off the TPN and gaining on oral feeds slowly, this way his body gets a bit of a break/rest to heal, but he still gets all his body needs to grow from the TPN.
 If it is a bigger problem, then he may be in the hospital for months, they may have to train me (Lorelle) how to take care of his TPN/IV's at home, IF he has to come home on TPN because his body can't absorb and digest nutrients on it's own. We don't really know what this means long, long term, but we're not sure we want to ask at this point. We'll just pray, wait and see what Ian's little body does, and if it is a bigger problem then we'll ask some more questions.
 The dr. mentioned after Ian's first surgery that the blood vessels to Ian's small intestine were different than he normally sees - he wasn't sure at that time what that would mean long term for Ian... he's a little concerned that those strange blood vessels are what is causing Ian's absorption problems. The dr. did say that after Ian's last surgery the blood vessels and intestines looked good and healthy (still a different 'pattern' than normal, but good and healthy). So we are really hoping it's just a rest and heal thing, and not something more major

This was really discouraging news to 'digest' yesterday, (pun intended...)  But today we are ready to tackle whatever hurtles come our way. Even if we were up a good portion of the night cleaning up puke  and doing laundry... life goes on... at least they all have fresh clean beds today! lol Maybe being up all night means the kids will nap lots today??

We are so thankful God has placed such a great support system around us! Thank-you!

We know and are comforted that God's plan is more important than any of our mere mortal plans, and we will wait on Him to show us what comes next. Only in Him do we find strength to do all that is set before us.
 Soli Deo gloria!
What an AWESOME God!


A few of the other things that have been going on around here...

-We are pretty sure we got rid of the mice that invaded my pan cupboard... I think we caught 5 and there was another one somewhere, but we haven't seen any evidence of it for the last week or so...hopefully he ran away!

-We are the proud owners of a new-to-us black honda civic hatchback - The toyota we had as a second vehicle was VERY old and finally quit on us. It treated us quite well for it's age though. and we were super happy we could get 2 years (I think) out of it.  Unfortunately, it decided to die when Matthew needed it to get home from work, so I had to pack up the kids and go pick him up in -30something...Thankfully that was a day we had a supper prepared for us, so we were still able to have supper at a decent time, and I still made it to parent-teacher interviews that evening. Then we juggled dropping him off and picking him up from work, till we could get the 'new' car. Oh well, Matthew is now driving to work with the luxury of heat, and cup holders! Pretty fancy if you ask me. (one thing we kinda overlooked when buying the car was a block heater... oops! If it does have one, we can't find it... lol)

-We've been battling colds and now the flu for the past couple weeks. (tis the season) Trying to sanitize and wash our hands as much as possible so we don't make Ian sick...

- Besides work, Matthew has been keeping busy with grocery shopping, running errands, visiting Ian, house maintenance and snow shoveling in the evenings/weekends. He is also such a great help around the house, and emotional support for me. I love him so much! (heart).

-I quit nursing/pumping now - my supply took a dive, and I decided it wasn't worth the time. and I was pretty sure I wouldn't have the time to get my supply back up, even when Ian comes home. (from the reading I've done on it, you can take supplements etc. but it still takes a nursing baby and LOTS of time, and I've mostly pumped and bottled so far - Ryan nursed for a week, and Ian only one time) This decision will give us just that little bit of extra time for other things at home. Other than that, it's pretty busy around here... I'm super thankful Ryan is such an easy baby! We can pack him up in his carseat several times a day and he seems to be just fine with it. I've had lots of offers for help around the house, but so far we are able to keep up with things around here - it's just a little extra messier/dirtier/and cluttery than we are used to. Things like clothes that don't fit are left in a pile for longer than normal, the bins of clothes that do fit are gone through but not put away right away, laundry takes days to do instead of 1 or 2, the floors don't get cleaned as often as before, the rooms only get cleaned up once in a while, and the beds pretty much never get made, (I did manage to clean under the furniture and the stove and fridge though, but under the beds is a different story) We are eating a little unhealthier cuz we don't have time to do the chopping and prepping like we did before, the kids are watching quite a bit more TV etc. These are all things that is fine to live with for now, it just takes a bit to get used to a new normal. Some things like making gingerbread houses, crafts, outings to parks, sledding etc. just don't happen right now because there just isn't enough time. We did manage to make 100 croquettes, a bunch of olliebollen,  7doz gingerbread men (which the kids LOVED decorating), 7doz shortbread cookies, a bunch of almond/jam squares. So we do have SOME time to do fun stuff, just not as much as before.

-Ryan has been growing like a weed! He loves snuggles, and smiles so much and is trying very hard to giggle! He doesn't sleep in the bassinet by our bed anymore, and is sleeping 6+ hours at night. Such a sweet content baby.

Lydia is growing and growing - I have a pile of clothes she has grown out of in her room, and she's keeping me running with all the things she gets into... sigh, the pantry is her favorite spot to cause a little trouble cuz it has the fun snacks like crackers, and cookies, candies and treats. She doesn't do so great when I leave her at someones house, or someone comes over to babysit. But since Ian's had a 1/2 room to himself in the hospital Lydia has been able to come with most of the time and watch TV or play in the play room - which she finds much more enjoyable. She is always ready to greet Dad and/or Mom at the door yelling 'Daddy' or 'Mommy' and gives us a biiigg hug - love her!

Dylan is learning so much at school and LOVES it. He's doing pretty good with our crazy busy life of coming and going all the time, although we notice that the stress/busyness is getting to him cuz he does break down once in a while and cries over silly little things that normally wouldn't be a problem. But all in all he loves making pictures and crafts for everyone he meets, and adapts well to being dropped off, or being babysat by ppl he doesn't know well. He loves reading books and playing his gameboy or the wii. And loves singing or sharing silly stories with Ryan at home and Ian in the hospital. Ryan and Ian smile and smile at Dylan, this little boy melts my heart.

Miriam is such a little sweetheart. She notices right away if someone is having a bad day, and offers hugs, kisses, cards and anything she can think of to make people feel better. She is a great helper for me at home, and Lydia loves it when Miriam reads to her. Miriam loves school, and we are so thankful she has such great classmates. This crazy busy life has taken a bit of a toll on her as well, but she's doing pretty good despite it all.

Well that's it for now - and if you wonder how I have time to write the blog post - I don't know, but I think I do this for me as much as I do it for all of you. It's kind of a therapy for me, I can get my thoughts straightened out, and if I really don't want to/or if it's hard to explain things to people I can at least direct them to the blog.
 Thanks for reading, and thank you all so much for all your prayers and support!

And for all those that read (or scrolled) all the way to the end of this long wordy post...here is a few pictures for you

Precious moments

Wacky hair day

Baby smiles

Bringing Ian to the hospital... 

I love my crazy kids

Sunday best! 

What my kitchen looked like while making gingerbread cookies... no it's not all butterflies and roses - candles, and soft music... it's a big mess, but we really wanted gingerbread cookies lol.

Laundry to do, remnants of a day out, kids just came home from school. a content baby, and an almost toddler getting into stuff...

At least she's getting into healthy stuff...

Ryan sitting in his bumbo happy as can be 

Lydia is learning to be more gentle

Gingerbread decorating - the mom edition

Yum! The school and hospital partook of these delectable treats.  I also saved one tray for our family gift opening night

One of the baking trays

Decorating gingerbread men - kid edition

YUM! 

Dylan liked the marshmellows

getting into the banana's I see... 

Update on Ian's 3rd surgery

Ian's surgery went great :-) The Dr. said the part of unused small intestine attached to the colon was about 10cm when he did the illiostomy (sp?) during Ian's last surgery. When the Dr. did the surgery this time he noticed that unused portion had grown to 30cm! The dr. said that normally the small intestine does grow more at this age, but he wasn't expecting so much growth. So now Ian has another 30cm. yay! Hopefully he can gain weight better now!  Matthew and I went to see Ian this morning and things went a little backwards in terms of Ian's health - here is my facebook status update earlier today:

Okay so, things were looking really good for Ian till last night. 

Yesterday afternoon they extubated him, yay! Then last night when I came to visit he seemed to be coughing a little and his oxygen went down for a bit and he turned blue. Ian continued to have low oxygen through the night. This morning they took an xray and his left lung was collapsed. He seems to have caught a cold, and now pneumonia. Tis the season right? They reintubated him this morning. Changed his pain med from morphine to fentanol (sp?) And gave him some blood. 

Dr. that did the surgery was in and everything else looks really good, the incision looks good. His tummy is nice and soft. Ian still hasn't pooped yet but he had quite a bit of scar tissue, so that's probably why. Right now the cold is causing a few problems with him, but that's about it. The dr's aren't super concerned that Ian won't get over this, it just makes his recovery a little longer/harder. No fun to cough and have a hard time breathing when you just had abdominal surgery. 

Since then he has been stable. Hopefully he gets over this soon and packs on a few lbs while in the hospital. We can't wait for him to come home - even Ryan has noticed Ian isn't around... Ryan keeps waking up often during the night, I think he misses Ian... cuz he didn't do this when Ian was home...  

A cute pic of Ian and Dylan from a few weeks back.  Dylan was showing Ian how to play a game on the gameboy he got from his uncles (aww heart) Dylan was actually talking to Ian "see you go over here, get those coins, and then..." lol so cute! 

Annual Family Picture Adventures.

This year we decided to use the self timer on our camera for our annual family picture. We decided this because every time we had someone over that could take the picture, 1 or more of us was already in our pj's, or had made their Sunday clothes really dirty, or had fallen asleep, or it was much too busy. (This time I did have my pj pants on, but changed back to my skirt for the picture, haha) 

Setting up the camera...

Had to get it juuuust right... 

Still not perfect... can you tell we were getting impatient? haha

Everyone smile... uhhh Lydia, that is the wrong expression, we said smile! haha! 

Oops, forgot to set the self timer... 

Aha! That's better! Except for Ryan, he didn't want to smile anymore... And Lydia's soother, sigh... These are the days... 

Ian's 3rd Surgery

Ian is scheduled to have his 3rd surgery tomorrow. It is to put his intestines back together so he can poop in his diaper again (no more ostomy bag!)

 We hope and pray the surgery is successful, and his recovery is short so he can come home asap. At this time he has been admitted to the hospital and he is fairly upset, he doesn't want to drink anything for the nurses (they got him to drink 10 mls, but that's it) Matthew is there now and going to try get him to eat. Ian won't get dehydrated because they have him hooked up to tpn (IV nutrition) but he will be much happier and have a much better night if he eats and fills his tummy. 

Love this little boy so much! and MISS HIM LIKE CRAZY!  

Ian at the hospital. Checking out his new mobile Mommy bought for him - he seems to like it.

Diapers please!

Oh, I'm SO ready to be done with ostomy bags, syringes to empty the poop out, letting air/gas out... I'm thankful there is such an appliance, but diapers are OH SO much easier. (don't really save much money on diapers either, cuz he still pee's)
 Here are a few pictures of the process it takes to change the Ostomy bag... It is changed as often as 2 hrs, but I've had it stay on as long as 72 hrs once. I normally change it every 24-36 hrs. It takes me anywhere from 15 - 40 mins to change. It pops off whenever, wherever, so you can't really schedule in ostomy bag changes- they just happen. Sometimes that means at 4am it's ostomy bag changing time, sometimes that means you may have to change it while you are out...(haven't had to yet). To my friend that has had 2 babies with ostomy bags (one still has it) You are amazing!! I'm so happy the plan is for Ian to only have it for a little while, much shorter than your babies have had/have them. These thing are not easy!

The set up - (this was at 4am) The following pictures were taken at a different time - I forgot to take pictures after I took this one haha! 

This one wasn't so messy. I've had them pop and the poop go right into his sleeve. eewww.  Notice his arms are wrapped up tightly - he gets to suck on a soother too, but he still kicks and cries.

See it's coming off .

With a bunch of soaking with a sponge tipped applicator to take off  so it doesn't rip the skin. (was given a bunch of the sponge tipped applicators from the hospital. ) Then clean the skin really well so the paste and wafer will stick.

The paste - has to be put on clean skin - and it has to be applied smoothly and can't have any clumpy spots. Not so easy when Ian kicks his leg and it sticks to the paste, then I have to smooth it all over again :-P

The wafer. I warm it with a warm magic bag (sticks better when nice and warm)- Normally it's round but because Ian is so small it has to be cut to fit his little body. The little hole is for the stoma (intestine) - I use a hole puncher to make the hole. Much easier than trying to cut it with scissors.

Applied. Now hopefully it stays. The white oval ring on the bag  is sticky and sticks onto the wafer. You can't see it very well but on the far left of this picture at the bottom of the ostomy bag is a little cap, that is where I empty the poop with a syringe the times the bag hasn't popped off yet, but the bag has poop in it. 

Now after applying everything, I put a warm magic bag on him and the bag/wafer - don't pee! lol (He REALLY likes this part.)

Done. Now it's time to put a diaper on him, dress him, clean up and find out what little Lydia has been up to... she has figured out that unless it's a real emergency, Mommy doesn't come and check on her....