Monday, August 23, 2010

Finally home!

Wow. Okay, lots to blog about. So sorry it's been over a week since my last post. (but I have been a little busy - and tired!)

I'll try to remember as much as I can and keep it in sequential order.

To start though, here are a few pics from a few weeks ago.

On Friday, August 13th, I ended up going to see the dermatologist who basically laughed at the situation and said no it's not bed bug bites. That it was ...what did she say...non specific. A bit waste of time but whatever, better to rule it out than go on getting freaked out I had bed bugs at home! Phew! What a relief!

So we geared up for the 2 day care by parent. Which went awesome! It wasn't that boring to be honest. I had the laptop, some movies, magazines, books, tv...but you know what -- the best thing of all was - I had my son!! We managed to get a little sleep and enjoyed knowing that we were going to be taking him home soon. Thanks Mom for bringing in a few meals. (and to Rosemary for cooking some up at home)

(I probably would have written so much more about it, but I would be here til next Tuesday typing)

Monday morning couldn't come soon enough. Medigas, the company who is supplying the oxygen came to show us how to hook him up, transfer cylinders, etc. We ended up waiting until 1pm for them to show. We thought it would be a 5min thing and they'd follow us home and get it all set up. Nope. An hour later --- we were good to go home! Thankfully, the nurses and doctors had given us everything we needed so we could go after Medigas taught us the ropes.
One last snuggle as we waited for Medigas to arrive.

And we were off!

He handled the car ride home pretty good. When we pulled into our driveway, I wish I'd had a video camera or at least thought to take a picture! (But I was really living in the moment) Abby was jumping up and down and clapping for joy. It was soooo cute. We were greeted to a wonderful welcome home complete with signs and balloons and streamers. (and yummy dinners as well thanks to Rosemary and Fiona - mmmm...thank you thank you thank you!) Thanks also to Lana for bringing by a super yummy meal last week. It's greatly appreciated.

It was soo nice to be home. I thought when I left the hospital I would be emotional but I wasn't really. Just elated to be leaving the place that we have been going to every day for the past 3 1/2 months. When we arrived home however I was overcome with emotion. I couldn't help the tears in my eyes. What a wonderful feeling finally being able to bring our son home.

And the feelings were mutal as you can see in the faces of those that met him for the very first time.

Abby was all over her baby brother as well. So quick to want to hold him and love up on him!

The week has gone by in a flash. I can't believe Lochlan has been home with us now for one week. He had his pediatrician's appointment on Wednesday and he weighs 5lbs, 1 1/2 ounces. And he is 18 inches long! I think his head circumference was 33 1/2 cm.
I was just so happy he'd gained some weight! Not a lot, but a little!

He also had his eyes checked by Dr. Arthur who said he's right eye is fine. But his left eye may need to have laser surgery again. Poor little monkey. He decided, well we all decided to give it until Monday to see if there was any changes. It's like walking a tight rope though. You don't want to leave it too long if it's not getting better because he could go blind in that eye.

Besides the usual sleep deprivation that comes with having a newborn in the house, things have gone really well. We've settled into a nice routine of meds - elemental iron, pediavit daily, plus his 3 puffers - salbutomol, atrovent, and flovent which he gets 2 puffs, 3 x a day (except for the flovent which is 3 puffs, 3 x a day) He also is still on lasix which we give him once every other day. And of course the oxygen. Which medigas is coming on Wednesday (this wed) to change his dosage if he's sat'ing well. The doctors have ordered him to be lowered!! Woo-hoo! Slowly but surely we'll get him off of this oxygen! He's getting 1/8 of a litre per minute. Which is almost nothing really! He's also needing to be supplemented with fortified breastmilk twice a day.

But I must say it's been a bit of a pain really. You really take for granted the fact that you can just pick up your baby and go. With Lochlan, we are stationed in the family room unless we hook him up to his portable oxygen tank. Which isn't a huge process, but it's not exactly a light load. It's more awkward than anything. So it's been a huge adjustment in that sense and I can't wait for the oxygen assistance to be done and over with.

But when I think about all that's he's been through these past 3 1/2 months (96days), it blows my mind. I can't thank you enough for all of your prayers and love and support. We are so appreciative.

Today, Monday. August 23rd Lochlan had another follow up eye appointment. Dr. Arthur checked him out again along with his coworker who afterwards discussed the fact that nothing had changed. (last week, he'd said if nothing had changed he'd have to have surgery) and he mentioned a few new hemmorages. Great. Instant tears. I do not want my baby to go through anything else. I know it's for the best if it gets done but NO MORE!!! Thankfully, Dr. Gayle came in and he checked him out (he's the one that did the last surgery) and said that he doesn't feel he needs to have surgery right now. He doesn't want to put Lochlan, or us, through that again. So we are going back again next Monday for another look. Please pray it regresses and is on the mend. If he needs surgery, so be it. But I really pray he doesn't. Dr. Gayle said that it was the scariest surgery he's been in. Oh great. That's comforting! But that's also because of the complications at the end of the last one right. The whole, tube slipping and then having to have chest compressions...yeah we'll stay away from that if we can please!!

So that's where things are now. Abby has been a wonderful big sister and helper. She loves him so much. It's been tough to get her to understand that she can't hold him all the time and the times that she wants mommy and mommy has to feed Lochlan or tend to his needs. But we're all getting there and adjusting together. We're trying the best that we can to involve her in his care and to also spend every chance possible with her. I love them both so much and am so happy to have them both finally together under one roof with Rob and I.

Tuesday, August 17, 2010

Blog to come

I promise I will blog as soon as I can. I'm still trying to juggle life with a two year old and a "newborn" on oxygen.

Have lots of pics to share and I am sooo very happy.

Must share this quote from today from Abby. She was talking about Lochlan and I told her that when he gets bigger, she can play with him. And she said "awe....thanks mom!"

Nuff said!

Saturday, August 14, 2010

Let the countdown begin!

How exciting! I am sitting in Lochlan's care-by-parent room here at the hospital typing this. We are gearing up to bring him home on Monday. Care-by-parent means we do everything - as if we're at home, and still have the support of the nurses/doctors if we need them. (They don't come in to assess him, give him meds,etc. We do it all)

How exciting! Oh wait, I already said that!

Lochlan is doing so great. He now off of his monitors following his car seat test.(He aced it!)

"Please mom, no pictures! I'm not quite sure what this thing is all about! Quite frankly, I'm a little freaked out!"

"Whoah! Hang on..."

He was sat'ing very well and he is now on .1 litre of oxygen. He was doing great on .05 litres but rather than having to adjust anything when we get home, he'll be on a set rate. Generally, they double it. Medigas, the company that will be supplying the oxygen is coming on Monday morning to set us up with the portable oxygen tank so we can take him home and be a bit mobile. Then they'll follow us when we leave to set up his permanent (at least for a few months) oxygen. Approx. every week, he'll be checked to see how he's sat'ing and if it's 100%, they'll decrease his O2 accordingly until eventually, he won't require any oxygen!

My mysterious "bed bug" bites ended up being nothing. The Infectious Disease people at the hospital sent me to see a dermatologist who basically laughed and wondered why I was even there. She said it was nothing and unspecific. NOT bedbugs! THANK GOD! At least now I can sleep in my bed without getting a little freaked out!

Guess we'll never know what it actually was.

As we gear up for Lochlan to come home, there's so much to remember. A bit overwhelming really. Lots of follow up appointments, and medications to administer. (Iron, vitamins, lasix, his 3 different puffers, and I feel like I'm missing one!) Yikes!

His potassium, caffeine, and sodium was discontinued yesterday. As was his human milk fortifier since I am now exclusively breastfeeding! woo-hoo!

He now weighs (as of yesterday) 5 pounds! (and .72 ounces!) Grow baby grow! And he's 43cm long (as of August 1st) which is 17 inches. He's too long for his preemie sleepers but the onesies still fit. Yet his newborn outfits he swims in. I bought these teeny tiny socks the other day and thought, gee I don't know if these will fit him, they look too small. Nope! They fit perfectly! I should take a picture comparing them to my socks!

I'm trying to remember if there has been anything else this week. I've been spending A LOT of time at the hospital. Thanks to Nana & Poppa, Granny & Grampa for taking great care of Abby. We're so lucky to have wonderful parents and that Abby loves spending time with them. Yesterday when I was getting ready to go back to the hospital, I said goodbye to Ab and she says "I just wanna snuggle for a minute!" So cute! How can you say no to that!! She definitely has been feeling the effects of my absence and the changes that are taking place and that are coming. She's lost a bit of her appetite and been a tad tempermental. But overall, she's adjusting really well. I pray when Lochlan comes home she will embrace it, rather than get overly jealous. We're going to try to involve her as much as possible and of course get in some just Abby and mommy time/Abby and daddy time. It will be an adjustment for all of us.

Daddy changing Lochlan's diaper for the first time!

Thank you to Mary Elaine for dropping off supper the other night. It was greatly appreciated. And ended up stretching out to a few lunches too!

I will try to blog as much as I can in the next little while. (and beyond with Lochlan's progress) But I think you'll understand if it takes a few days once we get him home.

Thank you for following my blog, and all your support and most definitely, all your prayers! They have worked! We are bringing our miracle baby home on Monday!!!!

Lochlan hanging out in his new room!

Tuesday, August 10, 2010

"Shout it, shout it, shout it out loud!"

I can't believe I quoted a KISS song. I must be married to Rob!

I'll get to the reason I picked that blog title in a minute. It's worth the wait - trust me!

Yesterday, I noticed I had a few red bumps on my left abdomen. I wasn't overly concerned thinking they were bug bites. No big deal. Last night after coming home from the hospital, I had way more. Left abdomen, left lower back, and left bosom. A little itchy but nothing like the "shingles" I apparently had a few weeks back. Side note -- the blood test came back from that and it was negative. But the doctor said it may have been that I was tested too early. Righto...the swab results still are not back yet.

Anyway, I decided to book an appointment with my doctor to go see what was up. (and fretted in the process) I told Lochlan's nurse and waited to call the doctor's office for 9am. (when they open) My doctor (well the receptionist who books the appts and consulted with one of the doctor's said to contact Dr. Onyette (she's on holidays and out of the country by the way) but to contact her office and infectious disease and have them consult on it. Take a look, etc.

I called Lochlan's nurse, told her this...she said she'd ask around as Dr. Onyette doesn't really have a replacement while she's away. And that it should be my doctor who diagnosis it. Which I thought the same thing to begin with but whatever.

The hospital called me back and said that it was okay to come in and feed Lochlan. (He's already in isolation) I called back my Doc and got an appt for 1:30pm.

End result: Doctor said I have....ready for this? Bed bug bites! Are you freakin' kidding me? Bed bugs!! That's just nasty! And where the heck did those come from? Rob and Abby don't have any bites so I'm thinking it's not our mattress but I did sleep in the chair that pulls out into a cot at the hospital the last few nights for a few hours each. Either way, I went home immediately and threw my sheets in a hot water wash cycle. They did say that Kingston has a bit of an outbreak of bed bugs. Nice eh! Even in the cleanest of homes and hotels.

I'm freaked out about the bed bugs thing but a bit relieved that it's nothing more serious. I honestly thought, if they make me stay away from Lochlan for another week or more, I will lose my mind. I'm being told that infectious disease control wants me to go see the dermatologist to confirm the diagnosis. Argh! They don't trust my doctor! Or the person she got a second opinion from who I believe is a pretty high up doctor.

So now I have to wait to see when that appointment will be. This hospital must love me. I did mention how I thought it might be from sleeping on their cot. Perhaps they are concerned they have a bed bug problem at KGH! Either way, they said it could affect Lochlan's care as well. Better not! Because I have wonderful news to share!

Lochlan is set to be discharged on Monday!!!!!! WOOOOOOOOOOO-HOOOOOOOOOOOOO! This is the "Shout it, shout it, shout it out loud!" part!

I pray all goes well and we can keep this date! Thursday and Friday I will be nursing him all day (8-8 or 11-11) and then Saturday and Sunday we will be doing care by parent where it's like being at home but with the nurses and doctors right outside the door. So we'll be doing everything - nursing him, changing his diapers (which I've been doing when I'm here anyway) and doing all of his care.

If that goes well, fingers crossed and prayers said, he will be discharged Monday!!!!
They said they feel that he is ready to go home but would like him to stay in the hospital for a few more days and they don't like to discharge leading up to or over the weekend.

He will be going home on low flow oxygen and I had to fill out the paperwork for that today. So we'll learn how to do all that.

Amazing! Finally an end in sight! I don't want to get my hopes up too much but it's hard not to.

PLEASE PLEASE PLEASE pray that everything goes smoothly and we can bring our miracle son home.

Latest pics:
Nana having a cuddle for the very first time.

Granny having a cuddle for the very first time.

and Aunt Chrissy!

Check out the peeker in the door window!

And one with Abby and mommy.

Saturday, August 7, 2010

Back to PCCU & new pics

Our first overnight together was...interesting. We had discussed nursing overnight if Lochlan was awake otherwise he would be fed through his NG tube. And I was supposed to be woken up to pump if he wasn't going to be nursed. Well...that never happened. I stirred when the nurses came in the room but didn't get up thinking they'd say, oh he's awake or whatever.

Then I heard him bottle feeding. What the frig?! This really upset me cause I had to get up to pump anyway. I did so and while I was pumping, Lochlan had a big poop. It was one of those things where I was like, can I change him myself? Do I need to get permission? Strange feeling to say the least.

So I went out and gave them my milk and told them he had pooped but he was settled and that I would change him if he was at home. And they said they'd be in in a bit.

So I went back to our room and layed there and thought, this doesn't feel right. It drove me crazy that I was staying the night and yet I was just a passenger on the train.

Needless to say, I did voice my concerns the next morning to one of the doctors. I still don't know why I wasn't given the opportunity to breastfeed. I asked if it takes more energy than bottle feeding and he said no. (the Dr.) Basically they said I should have been woken up.

Anyway, it ended up not being what I was expecting for our first sleepover.

Yesterday, Lochlan's nurse mentioned something about them thinking of moving him back to the step down unit. (Pediatric Critial Care Unit or PCCU) This was where he was moved to directly from the NICU. They had taken his monitors off when he moved to his regular room and they were finally starting to see that this may be not the best idea. HELLO!!!

I started to get a little upset because I thought, oh no, here we go again...another change. I asked for Claire to come up (the social worker) because I felt like I needed to talk to her.

As I was having a moment, the team of doctors came in. They said they had decided it was best to move Lochlan to the step down, not because he was digressing, but because they wanted to watch over him more closely. I had asked when he was first moved to his room, whether if something happened - mainly thinking of his nose prongs coming out, would anyone know and they had said no.
The doctor said this was a concern (ya think?) and that if his prongs did come out of his nose, he would just stop breathing. He wouldn't grunt, or groan or let you know in any way. That's a comforting thought isn't it?

My concern was why did they move him in the first place? They said something about protocol with not having had any spells for 10days in a row....blah blah blah. I think they must have forgot how little he is and how early he was born. I really think they've been kind of shooting from the hip if you will.

So that upset me. Not that he was going to be monitored and moved because of it but because there have been so many changes and different directions, and stories and too much to handle really.

They can't monitor him in the regular room because it's not hooked up to the nurses station.

Okay, so know I am sitting in his step down room in PCCU typing this. The plan is to nurse him 4 times a day and then gabboge him the other 4 times. Gabboge meaning feeding him through his NG tube so he gets a break. Didn't learn that word until coming over to peds. He is nursing like a champion. Amazing my little boy. He needs to gain 30grams a day before they will increase his nursing attempts. So they would like for him to eventually be nursing or bottle feeding entirely and still gaining weight so the NG tube can come out and then we can think about him coming home. He could still come home on oxygen which will more than likely be the case.

So that's where it all sits. I'm trying to be in 2 places at once - here with Lochlan and at home with Abby. (and Rob) Yesterday, I came for his 8:30am feed and stayed until I nursed him again at 11:30am. I went home around 1:30pm and after Abby's nap, we went to a cottage where Chris & Brad were. Had a great time actually. It was nice to have a bit of a break. Then I came back to the hospital to do his 8:30pm and 11:30pm feeds. He was amazing again! Thankfully I asked for a cot and was able to sleep for about an hour in between feeds. (There's no TV in this room unlike his other room - but I needed sleep more anyway!)

Today, I decided to spend the morning with Abby and then come to feed Lochlan and spend some time with him for the 11:30am and the 2:30pm feeds. Then I'll go home and spend time with Abby again and come back after she's in bed for the 8:30pm/11:30pm feeds. This will be my life for the next few weeks at least until we increase the number of times he's nursing (and in that case, I may just camp out in the hospital and take a few hours to go home every now and then) or until Lochlan is able to come home. I pray this only lasts for a few weeks. He is feedings every 3 hours so I'm trying to figure out what the best plan would be. He does 2:30am, 5:30am, 8:30am, 11:30am, 2:30pm, 5:30pm, 8:30pm, 11:30pm. So deciding what is best for our that I can still keep it as normal as possible for Abby. (on a side note - we finally got her big girl bed and she loves it so we'll see how it goes tonight. Last night, she fell asleep on the way home from the cottage and I was able to plop her into bed. She arrived in our bed at 4:30am! Not bad...)

Thursday, he had his eyes rechecked. And the Doctor said they looked great. I guess there was a concern about his left eye last week when they checked it but now it's better. Phew! Otherwise he'd have to get laser surgery again or some other procedure done.

At 40 weeks gestation, which is 1 week from Tuesday, he will be off the caffeine meds. (This helps prevent apnea which he's never had a problem with)

Sorry this is all over the place in terms of my thought process and update. It's been a few days since I blogged and I'm trying to remember everything.

Lochlan's weight is now 2100 grams (2.1kg) In terms of pounds and ounces....somewhere around 4 1/2 pounds. I know that 2400 grams is 5 pounds. So do the math!! : )

Today he gained only 15 grams. Not the 30grams they want to see but I'm just happy he gained at all! Yesterday, he stayed the same. He'll get there! Give him a break! He's already way more than when he was born!

Here are a few pics to enjoy. I will post a few more in my next blog. Aunt Chrissy came to meet him on Thursday for the very first time. He's allowed a few visitors now so I'll post those tomorrow. My camera is too far away! ha ha