Friday, October 29, 2010

Finally: breathing on his own

I had a bit of a hard time deciding what I wanted to call this blog. What do you call something so monumental?

I realize it has been over 2 weeks since my last entry. After I wrote the last one ("waiting") I heard from Medigas that we had to wait another 2 weeks for Lochlan to be checked again on room air. Because he was sat'ing high 80s/low 90s, Dr. Flavin felt that he didn't have much wiggle room. I understood. But I was still very pleased with his results. Plus, Lochlan had a bit of a cold at the time so it was good to know he was doing so well.

He surprisingly didn't have any appointments last week. And the 2 weeks passed by pretty quick. Lochlan did have his cold for about a week but thankfully it didn't get too bad. We just had to change his nose prongs more regularly and I gave him some homeopathic medicine to help relieve some discomfort.

Yesterday, (Thursday Oct 28th) Lochlan had an off day. The morning started out great. He was his regular cheery self - smiling and interacting and having a great ole time. Closer to lunch, he started to get fussy. Moaning and whimpering and I discovered he had a low grade fever as well. 99.8 degrees F. It was the moaning and whimpering that got me. Lochlan is a very happy baby. It was definitely not like him to be out of sorts. I debated (with Auntie Noni - thank you Auntie) on taking him in to get checked out. But in the end, we decided to hold off and see how he was with Tylenol in him. (It worked like a charm!) He was back to his regular self today. A bit more sleepy I'd say than usual but overall his happy self. The only issue is that he hasn't pooped in almost 3 days now. VERY unlike him. So unless he poops overnight, I think I will have to take him in to be checked out. Thanks to my mom and dad as well for taking Abby for a sleepover last night and to Granny for taking her to play with Mattea this morning at Aunt Janet's. She had a great time. Happy birthday Bud!! (and Grandpa Bob tomorrow!)

Now to the monumental news: Medigas came this morning. (hence the reason I was concerned Lochlan was getting "sick" yesterday) Loch sat'ed 99-100% at 1/16th oxygen. For his room air test he sat'ed 95-98%!!!!! GO LOCHLAN!! He even got up to 99 and 100% a few times! So happy!

Toughest part was waiting for the official word that the oxygen could be removed. Dr. Flavin had to give the go-ahead. Notice I said, "had." Around 2pm, Medigas called and said that she had paged Dr. Flavin and he said that we could go ahead and remove the oxygen!!!!!!! (I had expressed my concern that I hoped to not have to wait until sometime next week to hear) Hallelujah!

I decided to wait until Rob got home before taking him off the oxygen. It's been a long haul and we've been through it together, I really wanted to share in the moment together as a family. Abby, Lochlan and I went for a walk one last time with the oxygen tank while we waited for daddy to get home. I had called Rob after school to ask if he was planning on being late and he said he had to make one quick stop but no he should be home soon. I told him why and we decided he'd pick up some yummy supper to celebrate.

A few "before" shots

(Abby and Lochlan have the same expression!! ha ha)

Finally...We shut off the tank. (well Abby did) Such a relief. I was so elated I didn't even have tears of joy. I was beyond happy.


We took some family pics to mark to occasion.



And then I took Lochlan room to room to room because I could! I no longer have to lug around an awkward tank. I can dress him and not have to worry about where the tube is, or how it's tucked or pulling on his skin. I bathed him in the actual bathtub for the very first time! (well the bathtub within the bathtub)




I feel so ...overcome with joy. Our miracle baby is okay. He's just fine. I whispered to him that I was so proud of him and that there are so many possibilities in his future. And that I can't wait for him to discover them. That he is a true warrior.

As I type this, I feel tears welling up. This has been a very long process. I know it is not over. We will be working on getting his puffers weaned in the next 3-4 months. But this is another huge hurdle. I keep thinking back to the first day I went into the hospital and after being told that my water had broke and there was very little fluid around the baby that we could choose to end the pregnancy. Actually they kept bring that up. There was no way we could have done that and I'm so glad that we didn't. For us, that decision was the best for our family and in our hearts. (and thank God, everything has gone the way it has) I know that some families make different choices in the same or similar situations and I am in no way judging them for doing what they need/needed to do. You have to make the best decision possible for yourself, and no one has the right to say any different.

I think about the families that have been through this type of journey or will go through this and the outcome is or will be very different from ours. My heart goes out to you.

And then I think about the journey Lochlan has taken (and us too) and everything that we have been through. We are so blessed and I never take anything for granted. Thank you so much for your prayers. You'll never know how truly wonderful you are and how much you have touched our lives.

Summary: (from what I remember anyway - I've blocked out some of it)
water broke 21weeks, 2 days - minimal fluid in the womb - stayed in 4 weeks
Steroid shots 2 days prior to giving birth to help speed along lung development (or create really)
25weeks + 1 day pro-lapsed cord, born May 5th via emergency c-section 1 pound, 12 ounces, 13 inches long
Intubated, oscillator, self extubatations, Bi-PAP, C-PAP,
Bad infection that I've heard nurses and doctors mention pneumonia when referring to it
a blood infection
Quarantined
Shingles (me)
Moved to pediatrics for quarantine

96 days in hospital
a lot of doctors and nurses taking tremendous care of him
so many family, friends, and strangers praying
1 wonderful and supportive husband
1 amazing, patient, and understanding daughter
1 warrior son

Thursday, October 21, 2010

Waiting...

Lochlan's cold seems to be almost gone. Thankfully, he managed to avoid a really bad one. I pray he never gets a bad one....I know it's inevitable, but when he's this young it can be quite dangerous due to his premature lungs. Please don't be too disappointed if we are unable to do anything with you because you have a cold, sniffle, sore throat, or any other sign you are unwell. It just too risky. I understand kids need to build immunities but with preemie babies, it is different.

Loch will be getting his flu shot in the coming few weeks. They are given based on his birth age (so 6 months which for him is just 2 weeks away - crazy!)He will also be getting his RSV shot that has to be given once a month over the cold/flu season.
(a further explanation taken from the web: While RSV, or the respiratory syncytial virus, may just cause a cold in older children, it can cause a serious and life threatening infection in younger high risk children. These children, including premature babies, can develop bronchiolitis, which is associated with inflammation in the lungs, wheezing and difficulty breathing. RSV can also cause croup, ear infections, and pneumonia.)

We are still waiting for Medigas to hear back from Dr. Flavin about Lochlan's oxygen and what the plan is. I have my suspicions that he will need to be tested one more time before coming off of it and I'm praying it's early next week.

He had his latest pediatrician's appointment this past Monday. He now weighs 7lbs, 13oz and is still just under 21 inches long with his head measuring 38cm. He needs to go back in 2 weeks for a weight check because he is not gaining enough weight. He's below the 5th percentile now for weight and between 5-25% for height. If he hasn't gained enough in 2 weeks than we will have to go back to supplementing him. So the plan is if he needs to get a bottle or whatever during the day, then we will add in some formula to up his calories. He's still too young for cereal but the plan is that when he turns 4 months corrected to start him on rice cereal for the extra calories. (she actually asked me if he was showing signs of interest or if he'd lost his tongue thrust instinct) Not yet, no! He's almost 6 months old, but is just the size of Abby when she was born!!! (she was 7lbs, 12 oz and 21 inches long) Crazy!

Gotta go, Lochlan's crying and ready to be fed again!

Friday, October 15, 2010

Room air test

The day started off with some excitement. Medigas was coming at 9am! Lochlan woke up just before 8am, (and stayed awake because he obviously still wakes up over night many times to eat but thankfully goes right back to sleep) I changed his diaper, changed his nose prongs, and did his puffers. Then I fed him. He was ready!!!

Medigas came... and the machine wasn't working. *big sigh*
He tried for a good 20 mins to get it to work with no luck. Meanwhile I had a sleeping baby in my arms who was more than ready to be tested on room air. (so was his mommy!)

I'd even gave him one of the connectors that I was told to keep from the hospital to try - but no, it was the actual machine. So after some apologies, the plan was for him to call back to let me know if he was going to come later in the afternoon, or on Monday.

Disappointed to say the least. After all the buildup....I knew in my heart, that a few more days wouldn't be a big deal after all this time...but still. When Dr. Flavin told me, 2 weeks or so for him to be on oxygen, then Medigas came after only a few days...I was excited.

So I put Lochlan up in his room to continue his nap, and came downstairs to check a few things on the computer. About 20mins later, I heard the doorbell. He'd come back!
Totally unexpected. But perhaps he saw my disappointment when he left the first time.

Lochlan immediately was sat'ing 98-99% on 1/16th of oxygen. He shut it off (room air) and he was at 95-96% for a little bit, then dropped down to mid 80s and finally to 82% when the O2 was put back on to bring him back up in his saturation.

*sigh*

I need to mention that Lochlan has been fighting a bit of a cold these last few days. Tuesday - his chest was clear according to the doctor, but Wednesday is when I noticed him starting to sneeze and cough a little and sound more congested.

Also...Lochlan was awake by this point when he was testing him. So he was moving his feet around quite a bit which can really hamper the test results and accuracy.

He really ran through the gamet - hiccups, burps, toots, sneezes, yawns, coughs...

Finally, I nursed him and he fell asleep. While he was nursing, he was sat'ing at 95% on room air!!!! And for the remainder of the hour while he slept (and had still feet) he was between 89-93%. VERY GOOD! So proud.

So now we have to wait for the word from Dr. Flavin. He has to say, okay, he's ok to be off of the O2....or wait a few more weeks, try him again and hopefully he'll sat higher just to be sure....or wait until after his cold goes away, and retry him.

But to me, by having a cold and still sat'ing so well, I'm not as concerned about him while he is sick. I know that he can handle anything! And we only need to hang in there a little while longer. What a wonderful Christmas present this will make! (an early one hopefully!)

While the oxygen was shut off, Lochlan reached up and grabbed his prongs and yanked, and the tape came off much to some big cries...I was quick to try to put the prongs back in place but then remembered - oh yeah, he's not on oxygen right now. So I let him not have it retaped while the test was on. I could actually stare at my little miracle without the big tape across his cheek! I say cheek, because as much as wanted to take off the other side, I didn't want to cause any more discomfort just for my gratification!

I wish I'd had the camera closer to me so you could get a glimpse of our handsome baby without the getup. Soon enough!

So we wait. I did ask how long they will wait to hear back from Dr. Flavin before calling him. And they said Monday or Tuesday. Seems so far away since it's leading into the weekend.

A couple of cute quotes from Abby these last few days.

The other day she was loving up on him and kept giving him kisses and hugs and said, "I love you. We're best friends."

And she always says "he's so cute" too. And yesterday afternoon she said "Awe, you're the best Lochlan."

Last night when we were giving him his bath, she was helping to wash his body and I heard, "wash your arm....wash your leg....wash your tail..."

LOL Tail!!!!....oh how cute and hilarious...and innocent.

Tuesday, October 12, 2010

Thanksgiving and blessings


Wow! Another week already? The last time Medigas was here for a home visit, I thought, a month seemed so far away and we are one week away from it being a month. Actually, today Lochlan goes to see Dr. Flavin again. It's been 6 weeks since his previous appointment. Dr. Flavin is the respiratory doctor that is following him and ultimately is the one that will decide when Lochlan can come off of oxygen assistance.

I really feel like Loch is ready. He's trying to tell us that he is. He keeps pulling his prongs out. Last night, we changed his tubes, freshened him up and as soon as I put him to bed, he reached up and pulled out his prongs. Um no thank you! So I fixed it obviously. But I was hesitant to leave as you can imagine. So I hovered a wee bit. He did it again. Seriously, Lochlan? I'm not going to stand over you all night!

So I waited until he seemed to be sleeping then slipped out to our room and waited. I was definitely going back to check on him! So, 10 minutes later, I went in, and I heard...."shhhhhh" his tube had become disconnected from the tank. Oh yes it did. And he'd yanked his prongs out again.

I ended up getting more adhesive and changed it completely just to be sure. (The ones we'd put on to hold the tube in place was a bit thin in hopes of not pulling too much on his cheeks upon removal) One other time in the night, I went in to check after I'd fed him (even though he was quiet and sleeping and hadn't heard anything in the monitor) and what did I hear "shhhhhhhhhhhhh" AGAIN! Are you kidding me?!!! How the heck????? Plus he'd had a #2 so could be his kicked and kicked and somehow knocked it out but I have no idea as it's never happened while he's been in his bed before. I also made sure to wrap the tube through the slits in his crib to give it extra protection. But I still slept with one eye open if you will.

That boy, I tell ya! He lets you know when he doesn't like something. Even back when he was in the NICU - pulling his intubation tube out. He still fights hard with his puffers too -- sometimes giving the left hook, then the right, then both! Warrior indeed!

So needless to say I'm anxious to see where he's at with his oxygen. I'm praying today is the day. Although he'll probably have to order it and then next week, Medigas will come to monitor him for the hour. I hope, I pray, he's ready for the next step. I know I can't place too much emphasis on it and end up being disappointed but a gal can hope right?!

Last week, Lochlan had his eye checkup again. It had been 10 days since seeing Dr. Arthur. His eye is still looking good where Dr. Gale did the surgery, but there is a new hemorrage. WHAT??? So now he's going to monitor that. Seriously? Seriously!
But it must not be too much of a concern as his next appointment isn't until November. He did have a very difficult time getting a good look since Lochlan was awake and flailing about. Poor lil guy. I don't blame him. Dr. Arthur said that next time, they may have to take him to the OR to be sedated. Not go under but just enough so he's calm. Well now, you can bet I will definitely be trying to keep him awake and feed him just prior to his appointment so he'll be more chillaxed!

***finally getting back to writing the blog (about 12 hours later!)

Lochlan had his special infant clinic appointment last Wednesday. He is right on target for his corrected age. He's doing so amazing. Smiling and looking around and getting stronger in his neck. He's even started cooing a little bit over the weekend. So cute. The doctor told us to put him down for tummy time about 3 times a day so he can get even stronger! (and maybe it will help round out his little preemie head)

Now that we had his apt with Dr. Flavin since I wrote about it a few paragraphs prior, I can now tell you that it is so important to hope and pray! Lochlan is astounding! He was sat'ing on average 98%!!! Even got up to 99% Go Loch! So they decided to try him off of the O2 altogether and....the first # was 96%...then is gradually dropped and remained at 90% for about a minute.

So.......the big news is: they hope for him to be off of the oxygen in 2 WEEKS!!! And then we'll start to wean him off of his puffers over the next 3-4 months. What a relief! Amazing, my little boy is amazing!

We will meet with Medigas sometime in the next week for the home visit where Melissa will monitor Lochlan over the course of an hour or so with no oxygen. If all goes well and please pray for that - he should be done needing that extra little bit of help! : ) But like I said earlier, he is sooo ready to be done! Yes, Lochlan we can take a hint!

Oh, and he now weighs 7lbs, 10oz. And was 52.5cm long...which I believe is still just under 21 inches long. He's almost as big as when Abby was born. Hard to believe I thought she was teeny tiny at that size - now I feel like Loch is huge! ha ha

So that's my very happy news. What a wonderful Thanksgiving this has been. So very blessed.

P.S. Must share another Abby-ism! Last week we were driving home from my sister, Christina's and it was dark and Abby said: "It's dark out - I need a night light!" : )

Sunday, October 3, 2010

Milestones

Well okay...it's been over a week since my last blog. I find it difficult to blog when all I want to do is sleep when the kids are finally asleep at the same time or do the dishes or catch up on one of my favourite shows. The DVR is almost at capacity and we're gearing up for another week. Oh well...at least you can watch shows online but who knows when I'll get to that either!

Lochlan is doing well. He's getting bigger and is now smiling. He has the cutest little smile. Actually it's a pretty big smile - it fills his entire face. I managed to catch a bit of it in this picture.

He's also started rolling from side to side and is able to move his head from one side to the other.

The problem with blogging week to week is that I forget things that I want to mention. I'll try to remember as best as I can.

Loch had another follow up eye appointment last week and things are healing and looking good. Although they keep mentioning this one thick vessel that they've never seen before. But they aren't concerned, so I shouldn't be either right?

We go back on Thursday and I'm praying that will be the end of opening up his eye with this clamp thing and shining a big light in his eye and poking around in there. It hurts my heart to hear his cries whenever he gets it done. It can't be comfortable. I know it's a necessary evil but still. I think it starts to bother me when there is more than the 2 main doctors looking at him. I'm like...okay....he's good now...okay...you've had your look. I know part of it is so that people can learn and they can confirm as well, but I feel a little bit like, he's been through enough - now it just feels like torture.

Abby loves to help her little brother. Help....yes more like, she wants to do it all herself. This morning when I was typing up this blog (which I had to take about a 3 hour break from doing) I heard, "Mommy, Lochlan pooped!" I said I'd be there in a minute...and then thought better of it. (I can't leave her alone with him but she had been watching a show and I took advantage of the spare moments)

Well, good thing I went in to check. Even though Lochlan was in his playpen, she had his pants off, and his feet up in the air (hiked as far as they would go by the way and he was right up against the side of the playpen) and his one snap undone on his onesie. I scooped him up, much to some protest from Abby who said, "No Mom, I'm doing it."
Um no...

I compromised and had her help me by putting him down on the floor on a change pad and she undid his diaper and even wiped his bum and then did up his new diaper. She actually did a really good job. But man...if he wasn't so fragile, I could practically leave her to babysit. (JOKING)

She helps out all the time and it a wonderful little helper. Helping with his bath, his diapers, etc. But I have also caught her doing some "oh no things" like the story above. Trying to pick him up, burp him, yanking on his oxygen tube...that sort of thing. And then there was the time earlier this week where she tripped and almost kicked him in the head. (at least I think she tripped) I was like, oh be careful honey...or something like that....well wouldn't the lil monkey try to kick him in the head again. Thankfully I caught her just in time and was able to move Lochlan out of harms way. That was definitely a "naughty step" moment.

Overall though, she has been wonderful and really loves her little brother. I can't wait for him to get stronger and bigger so they can play together. Even just to interact a little more. She loves it when he smiles at her. It's super sweet.

The other day Lochlan and Abby both decided to have a poop at the same time. I told Abby this and she said "We're pooping together - as a team!" Here's the pic to go with that story. I had to grab my camera to capture the moment before I was going to change both their bums. She wanted to lay down beside Loch.


I could go on and on about all the cute stories between the two of them. And I'm so thankful they will continue for years to come.



Here are a few pics from when Abby and I went apple picking.





Too cute not to share!