Lakai's story

[March mummy]

Wow, how different he looks now to te start, you still obviously have a long way to go with him, but things are defo going in the right direction for you. He is one true fighter just like his mum. Look after yourself and all will be well.

 

[Dani33]

What a beautiful little guy, you must be soo proud!

 

[nkbapbt]

Updates:

Yes Im a bad momma why? Because it has taken me forever to update!! And so many new things have been going on!!

Sorry. *hangs head in shame*

First of all Lakai went from SiPap to CPap and they are taking about moving him to High Flow oxygen support tomorrow (here is what I have grasped about what this means...High Flow gives pressure in order to keep his lungs open and can give o2 if he needs it. Its nasal prongs, if you have seen anyone with an oxygen tank...its the face thing they wear.) I hope that makes sense, I am very tired and have had a VERY bad night. Nothing Lucky related, just life related.

Any how...

I had a great birthday yesterday, instead of going to see Lil' Wayne I decided that we should spend that money on buying things from IKEA for our home and Lakai's room. I just felt guilty spending money on myself when I knew we needed things for him. It's amazing how much my way of thinking and seeing things has changed. As I told my mom and Kyle, I use to be such a snob about what labels were on my clothing, what designer made my jeans and now? I could careless and I would rather buy the nice but cheaper clothes and spend the rest on our son or things for making our house a home.

I know as a teenager you are sort of allowed to be selfish in some ways, like you worry mostly about yourself, about the clothes you wear, buying silly things you don't really need. But as a parent your whole outlook changes. Its amazing and frankly I never thought it would happen to me.

I really had an eye opener on my birthday when I decided what I wanted to do instead of the concert, I truly had some deep insight into the person I was and to who I have become.

Now back to Lucky!

We have had the pleasure of having this terrific nurse Janlouise (I hope I have spelled that right, I have not seen it written any where yet!) who allowed us to "claim our baby". Which means..we were allowed to bathe him! We could back and forth on who was cuddling him and even his Grandma was able to cuddle with him. Which was lovely, I loved seeing them together.

She's awesome with him and he really responds well to her. Meaning his stats stabilize very nicely! If all goes well (which it will) Grandpa will hold him next, that is if the nurse who is on that day will allow it..some don't like Grandparents holding for some odd reason?!

It's been wonderful "claiming our baby", as weird as it sounds..until lately we really couldn't do much with him except take his temperature and change his stinky bum. Which was lovely, don't get me wrong. But it didn't exactly feeling like we were parenting, if that makes sense?

But now I can move him out of his crib myself, I can dress him, bathe him. I have learned all his "cues", like when he does and doesn't want his soother, when he needs to be repositioned, what helps to sooth him.

It's amazing how he reacts now to my voice and touch. Especially when I tickle his feet or kiss his hands. He smiles and I swear if he could..he would laugh or coo!

He still cannot cry like a typical baby, his voice is hoarse still. But he does sigh, hiccup and make an "ahhh" sound after well...pooping! hehe.

I still can't believe he is truly mine sometimes, he is just so perfect and just the mere sight of him makes my heart feel like it will explode from my chest with love. I am so proud of every step forward he has made, even the small ones. And while yes this was a huge roller coaster, there is nothing I would change about it. I know that there are things that have happened on this ride that in the future could be tough, but there is nothing anyone can throw at me that we cannot face and overcome.

On to less sappy stuff! =P

Some of the male (and female!) readers may not like this next part..but..I must say the human body is a very amazing thing...I make enough milk in a day to meet his exact feeding amounts for 24 hours. I think that's pretty cool. And before I had been told his feeds went up, I was making more..and didn't understand why, until they told me about the increase. You must admit to much info or not, that is cool.

I cannot wait to start breast feeding..mostly because I feel rob having our pregnancy cut short, so this is like our way of making up for it..the bonding experience.

Another very cool nurse we had was Jill, who is a Pittie owner..she rescued Hugo! More brownie points for her, and her hubby is on Hugabull...double score! Just had to mention that! hehe!

What else?

I am really tired..but I really want to say that he is now 5lbs! Bad momma again forgetting his weight, I will double check tomorrow! And confirm!! =)

I think that's all for now...I will post another update when he is on high flow.

Hopefully Gennifer can explain it better than I can..please?! =)

PS Zoe Janlouise remembered you, Raven and your son...she never cared for Raven, but she just loved you guys. She's a Kiwi lady...loud, outspoken...WONDERFUL! I want to bring her home with me. Anyways she told me to tell you hello. And asked how Raven's dad is?


Thank you to everyone who donated in honor of my birthday! The final totals were over $3000, most of it going to BC Children's Hospital...sorry Hug and Bully Buddies..I wish more had gone to you two..but thank you so much to everyone who made my birthday the best one yet!!! I truly know the best people ever! And have the bestest friends!!

Good night!

HAPPY BIRTHDAY HUCKLEBERRY TOO! (one day late!)

Latest Update:

So what's new in Baby Batman's world you maybe asking?

Well other than today being his 90th day of life..NINETY days?! ALREADY?! Three months? WOW!

He is 5lbs 8.8oz

Plus he is the most amazing little funny man that I have ever met.

A few days ago he enjoyed his first cuddle ever with his Grandma (my mom!) and it went very well. It was only spur of the moment because I had to go pump (1st TMI) and the nurse said "Well why doesn't Grandma hold him for the time you are away". So she did. And it went very well. It was lovely to see my mom cuddling her grandson...something I sort of wonder if I would ever see.

Yesterday was his first day on Low Flow (nasal cannula) which I cannot seem to locate a good simple explanation on this works, so hopefully Genipher will jump in with her wisdom and explain..but here's my attempt. Its basically 100% oxygen delivered in cc's instead of before when it was measured in %'s. Right now he is on 100cc's however he is stating out high and not dipping below 95 on his oxygen saturation. His respiration rate is ranging from about 30 to 65. And his heart rate has settled into a nice normal rage, which is lovely since it was high.

Honestly? He is doing in my mind (and the doctors and nurse) better on Low Flow than on CPap, however there is a chance if they push him too soon, he could collapse and have a set back. Which would not be good at this point when we have come so far. I mean when he is put back on to CPap he is stating low, he has brady's and apnea...which he hasn't even had one dip or any A,B, D's on Low Flow.

Today he did even better on Low Flow, yesterday he was on for 4 hours and today he was on for 4.5 hours, and tomorrow we are hoping for 8 hours..and then 12...and then totally on Low Flow. If everything goes the way it has, that will be no problem!

So he also had his first MRI yesterday, which I will admit was a bit nerve wracking, however I felt very confident in the team who was caring for him. And off he went..Of course we had to wait until today to get the results...which were.....................................................................................................................................................................AWESOME!

It turns out that the Grade 4 bleed was actually a lesser Grade 3, which is still fairly severe however he has not had any of the major side affects that tend to cause the problems later in life, or I should say the major issues such as CP. The doctor was super pleased with the outcome and though he said he couldn't promise anything, you could clearly tell that he was a little thrilled that it was good news he was telling us.

So WOO HOO!

But only the future will tell us what Baby Batman has in store for us and himself. I have a strong feeling and have all along that he will do just fine.

Maybe I am naive, but I doubt it. My gut feelings have always backed me up and I have learned to trust them fully over my 30 years of life!

Well now what? I gave Lakai a Mohawk today...pictures below and in his many many many albums..sorry if I go overboard with the photos, I just cant help myself. He is amazing and every day he is here is a blessing. I truly just cannot get enough of him. And even with all the picture I take..none capture the beauty and awe which is him.

TMI time..on Monday we get to start of first breast feeding sessions. Which means pretty much he will start by learning to "latch on" onto a "dry breast" (so a freshly pumped breast) and then move on from there. Prems can have some issues with suck/swallow/breathing, but if you saw this little monkey "rooting" with his mouth open and sucking away on his soothie, you would see what we all do...a baby ready to start! And one who will succeed.

I think that is all for now...we are in the home stretch..which is scary and wonderful.

I am so peeved I

Stay tuned!

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First day on Low Flow

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Still on Low Flow (perm) at 30cc's of o2

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[AubreyK80]

hes a little fighter

what a beautiful little baby boy , thank you so much for the update hun . Stay strong .

 

[Jen&Freddie]

I haven't read since New Years so i have had a good little catch up!! Lakai is absolutely gorgeous, and he looks fab in his little clothes!! In that last set of photos, he has the most beautiful smile, it looks so meaningful, if not a tad bit cheeky!!!
It is incredible how strong you and your family, and especially your little soldier have been. A real inspiration to anyone who has a preemie xx

 

[sue08]

love the pic of him smiling

 

[AnnaBanana9]

He is sooooo handsome in his little outfit! He's doing so well - what an inspiration he is, and you are!

 

[lousielou]

I'm so pleased he's getting on so well - he looks beautiful!

 

[baby D]

wow - what an amazing lil man you have got yourself there - so strong! And, mu goodness, what a change - he is looking wonderful - such a big boy. And i think you are right - he really does seem to be smiling xx

Stay strong and thanks for the updates xxx

 

[emzlouize]

oh my god i have never read this b4 i herd about little lakai but never had chance to read it and i have jst sat and read the whole thing i am sat blubbering like a big baby

im so happy that lakai is a little fattie now and looks a picture of health u have been thru so much and are truly an inspiration to all xxxxx

 

[Drazic<3]

I haven't seen little Lakai's story until today either but i am so pleased to have done. What a beautiful little boy, with an inspitational, amazing mummy and daddy.

Thank you so much for sharing. Hope you are having a lovely Valentines day

 

[LuluBee]

he's doing so well honey, I'm so so happy that everything is going so well for you. he really is a little fighter xx

 

[VanWest]

How is he doing ? I keep checking the thread for updates..

 

[kellysays2u]

Keep looking for updates. Lakai is such a strong and handsome little man. Anyone know how he is doing lately?

 

[nkbapbt]

Well not really..but Lakai is took his first breath of air without any sort of support today. All day and still going strong right now.

No more oxygen!

We had an amazing day today.

I went in after not seeing him yesterday (so hard!) because I was feeling sort of "off" stomach wise, in other words I was praying to a porcelain god for the better part of the day. Oh please I have talked about breastfeeding already...throwing up shouldn't bother you! Be warned now there will be more talk about breastfeeding later.

So I walked over to Lakai's crib and was stunned to see that his Low Flow nasal prongs were gone. Um..HELLO? The nurse casually mentions "oh they weren't staying in anyways so I took them off". I felt like saying "I know I have been saying that for like 10 days now!" But instead I texted Kyle to let him know what a smart son we had.

I quickly picked him up for a cuddle. Which prompted him to stay awake all afternoon. Which was something very new for him, normally he only wakes up for his feeds.

Then physio came by to assess him and he did awesome. I was so impressed at what he was able to do but only that, he willingness to do them. Before he was so cranky about being held, but today it was like this little happy light went off in him (one of many lights) and he thought that being handled like that was a ok. The therapist did things like put the blanket over his head to test his reaction and he tried to pull it off but clearly couldn't because he is corrected 4 days old.

I will interject here that his corrected age is now 5 days old and this test that he had was from 34 weeks preterm to 4 months corrected.

She also placed him on his stomach with his head flat on the bed while I stood on the opposite side and talked to him, he lifted up his head and turned it to the side I was on. Both ways. I don't know if I just have not been around a lot of very very young newborns..but none of the babies in the NICU are doing this. And even our nurse was like "wow". But then again he has been doing push up's on my chest while we do kangaroo care or skin-to-skin cuddles for weeks now. Especially when he is ready to "play" and wants to see me.

The physiotherapist had no issues with him, she said his legs were maybe a little stiff but it was because he liked to hold them bent and not a worry. She thought he was doing great developmentally.

Awesome!

Though...not to toot my own horn, but I sort of figured.

So after she left I tried breastfeeding him. I tried without the shield this time, just to see. And he latched the first try and actually ate almost a full feed! Without any problems. He did dip but it was because the nurse would not listen to me when I said that he had really gotten a lot (if you are a mom you know what I mean by you can just tell by your breast how much the baby ate..) and she over fed him.

We have our Feeding Study on Monday...but I have this feeling that it will be fine.

He did have his VCU to see how his kidney's are functioning basically to see if he has any reflux, which he does. His urine does mildly reflux back into his kidneys on his left side..which is odd now that I think about it. Why? Because it seems that everything that is "off" is on his left side...from his head bleed, to his bad eye...to this.

Hmm.

Its only stage 2 reflux and shouldn't ever be a problem again. But will be watched.

It looks also like his ROP in his left eye is getting better, there is no plus disease and the "popcorn" has gone away. They will check again next week. I just keep thinking what if the doctor hadn't waffled on her decision to operate the last time they checked his eyes? He could have had laser eye surgery and be reintubated for probably nothing. I am glad she second guessed herself and I really admire her for doing so.

Plus it sounds like if he does not need surgery and the feeding study goes well..........we could be transferred next week to Lions Gate Hospital. Which leaves me with mixed emotions. But I think it will be easier to get over the feeding issue so much quicker because I could go for every single one. And not be an hour away. Which makes it so hard to do where he is, unless I live at the hospital. And while I do love it there...I don't want to slum around there like a bum! =P

Sleeping on the family lounge couches!

Also today...Lakai's Grandpa got to hold him for the first time ever. You could see the tears welling up in his eyes when I put him in his arms. I waffled a little about it being a good idea because he just came off all his oxygen, but he did very well. He started to dip towards the end but Kyle took over and all was well.

So that was very exciting and nice for everyone, especially Lakai and his Grandpa!

On other news.

Another micro preemie at the NICU just did awesome in his PDA surgery, Chance. So thats totally great! He is such a little fighter. I have a feeling he will do just great in life. Its just getting past these next few months. But he can do it, he has wonderful parents.

I think thats all for now!

Thanks for all the support like always everyone!

Lots of love, Nic and Lakai!

 

[nkbapbt]

So as I mentioned in my last update Lakai had a swallow test in order to see if he was aspirating liquid into his lungs from oral feedings. Well he is and so much so that he needed a g-tube placed.

A g-tube is:

A gastric feeding tube, or "G-tube", is a tube inserted through a small incision in the abdomen into the stomach and is used for long-term enteral nutrition. The most common type is the percutaneous endoscopic gastronomy (PEG) tube. It is placed endoscopically: the patient is sedated, and an endoscope is passed through the mouth and esophagus into the stomach. The position of the endoscope can be visualized on the outside of the patient's abdomen because it contains a powerful light source. A needle is inserted through the abdomen, visualized within the stomach by the endoscope, and a suture passed through the needle is grasped by the endoscope and pulled up through the esophagus. The suture is then tied to the end of the PEG tube that will be external, and pulled back down through the esophagus, stomach, and out through the abdominal wall. The insertion takes about 20 minutes. The tube is kept within the stomach either by a balloon on its tip (which can be deflated) or by a retention dome which is wider than the tract of the tube.

Gastric tubes are suitable for long-term use; they last about six months, and can be replaced through an existing passage without an additional endoscopic procedure. The G-tube is useful where there is difficulty with swallowing because of neurological or anatomic disorders (stroke, esophageal atresia, tracheoesophageal fistula), and to avoid the risk of aspiration pneumonia. It is also used when patients are malnourished and cannot take enough food by mouth to maintain their weight, such as with mitochondrial disease.

It seems that because of his PDA (What a PDA is surgery which left his vocal paralyzed (open) that is the reason he is aspirating. Which can and should get better in months. If it's not that causing it, it could just be he is preemie and having to learn to swallow properly will take him a few extra months..or even weeks.

They will do the swallow (feeding study) again in two months to reassess him. If he passes they will remove the g-tube. For now though...it means he should be coming home at most in 2-3 weeks. Basically once the g-tube site heals and he is tolerating full feeds via the g-tube.

I am upset that we will not be able to breast feed yet, but we will get there. It may just take a little longer. Which seems to be his thing, he does everything at his own pace. So in time we will get there. I think once his voice comes back...and his paralyzed vocal cord gets better, that we will start to make some progress.

So last night he had the surgery for both his g-tube placement and his left eye laser surgery. He was not the typical case that would require the surgery but the doctor felt they would do it just in case. Both went well. We were shocked that they happened because the doctors first told us it would be weeks of waiting for the g-tube surgery. So thats awesome it happened to quickly, it means he will be home that much sooner!

I think thats all for now.

His intubation and extubation went off without a hitch, which was the scariest thing for us because of his past problems with tubes in his throat!

I will admit the g-tube is a little hard to get use too. Its like a plug on my son's stomach, but whatever he needs. I am sure by the time it's no longer needed..I will be use to it! =)

Take care everyone!

 

[nkbapbt]

Oh wait you already know!!

LAKAI HAMILTON KRAFT!! AKA LUCKY LAKAI!

Well we arrived at the hospital late in regards to our 12pm discharge time, but all was well. We basically had to stay around for some last minute loose ends and off we went. I thought I would be more upset leaving...but I won't lie, I wasn't. I was upset that I missed saying goodbye to people like Dr. Jenny, Cindy, Katherine, and JanLousie! Our favorite nurses.

Janlousie was our life saver, the nurse who kicked our butts into claiming our baby.

So basically we were free within a mere 30 mins, so we loaded Lakai up in his car seat and busted out of that joint!

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The car ride home was uneventful clearly...

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Once we got home it was business as usual...feeding time...meds time..everything went off with out a hitch. Kyle and I have our rolls already worked out. And its easy peasy!

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Jaeden LOVES him...she thinks its her new job in life to wash him every two seconds...trying to lick his face. She is so gentle and wonderful with him...I cannot express what an amazing dog she is! I know some of you know...but she has been ill lately. And we just found out that the needle aspiration shows the possibility of cancer after all. We are still waiting for further results!

Having him home has turned my such neat and tidy house upside down...which does not sit that well with me because I like things in order! hehe. But it will work itself out in time. I am thankfully not so anal about it that Im trying to change it all right now!

Last night..Lakai decided that 2am was a good time to play. So he stayed up for hours...Kyle finally took him and brought him back at one point, and I brought him into bed with me....YES I know. First of in my defense I am light sleeper, I don't move in my sleep and I rolled up a buffer receiving blanket between Lakai and I...So yes we cuddled in bed together. We are getting a co-sleeper ASAP.

I cant sleep any other way and neither can my cuddle monkey!

Having him home is WONDERFUL but it has made me realize all things we need for him!!

Like onesies, sleepers, clothing with snap fronts to make room for the g-tube.

A co-sleeper

Thick blankets

A Buddha wrap sling

Warm booties for going outside

Warm hats for outside

Toys!

Stuffed animals...like realistic animals like turtles, elephant, horse....so later I can teach him about them.

Blocks

Baby proofing stuff!

And a stroller!

That's about all for now! Sorry this was a short update!

 

[nkbapbt]

"Hi Nu Nu lets be friends..."

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"You smell ok kid...."

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"I guess we can be friends.."

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"Be verry verry quiet...there is a killer pit bull behind me...sleeping...must not wake the beast..."

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"TOO LATE"

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"Did you hear the one about the pit bull that ate the bab_...."

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"Just kidding kid...you are alright with me"

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THE END

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[VanWest]

Welcome home Lakai!! I'm so happy for you guys, he is so beautiful! How much does he weigh now? Love the pictures

 

[louise1302]

well done to all of you...lakai is beautiful...what an amazing little boy.....so glad you have him home xxx