Updates...I am going to save time (like usual) and just cut and paste from my Facebook!
Weight: 1709 (almost 1000g more than his birth weight!) 3lbs 12.28oz
Age: 61 days
Corrected Age: 33 weeks and 2 days
A few days ago I held Lakai like you would any baby, cradled in my arms so I could see his perfect little face. It went very well. I decided to do this because skin-to-skin was a little iffy the last few times because I was cooking him like a hot crossed bun against my chest..toasting him up too much.
And yesterday Kyle was able to hold him the same way, which was neat for Kyle as well. I think he prefers it, but Lakai had a harder time with his destating that day. But he did do the most perfect little smile for us, it was unbelievable. It probably was the most true smile we have seen him do yet, it melted our hearts! And of course brought his dad to tears =)
Today Jakob (my half brother and Lakai's uncle) came to visit Lakai for the very first time. It was pretty neat, he couldn't get over how small he was. And he said he was much cuter than he would have thought! I think I saw some tears welling up in his eyes when he first saw him too.]
Jakob asked a ton of questions about all the medical stuff and tried his best to not be too loud while hoping Lakai would wake up so he could see his eyes open.
Matthew (my nephew) also came in, but it was the most brief visit to date. He looked at him, went around his incubator and left. I think it was too much for him.
He is still on antibiotics for his UTI but will stop on Saturday and that means his horrible looking scalp IV will be removed (thankfully!).
He has a very big day ahead of him tomorrow they have been preparing him all day and tonight for extubation by giving him steroids to reduce the swelling in his upper airway. And giving him caffeine for his lungs. The extubation will be taking place in the OR because the ENT (throat doctor) will be looking down his throat with a very tiny camera to check for numerous things that could be causing this swelling. The plan is to have him put on CPAP again if the ENT feels the swelling is not so damaging that it could cause him to not be successful on CPAP. But if the swelling is bad or they think there is other reason for concern they will put him back on to the conventional ventilator. And either try something differently or wait until he basically outgrows the swelling.
I really hope that everything works out this time because the only thing holding him back from being on CPAP is this swelling.
Right now the vent he is on is doing barely any work for him..he is on a PEEP of 5...21-24% o2 and a mode that just keeps his lungs from completely deflating.
Maybe third times the charm?
Also he has graduated from incubator to a "big boy" bed (crib) because he is just too hot in the incubator! I dont know why but it feels like such a huge step forward! No more plastic dome home!
I should get myself to bed...we have a big day ahead of us. And I just spent two hours putting together a play yard/change table/bassinet combo thingy..a bassinet...a vibrating soothing chair...
Which brings me to the fact that a few nights ago..I put his BEAUTIFUL crib together in the living room and once I got it all done, we rolled it to his room. And of course? It was too big to fit through his bedroom door! I was SOO mad. We had to take it apart to fit it in...thankfully it not completely apart..but still!
Thanks to everyone who offered their opinions on the nursery decals...stay tuned for the final picks! But you will have to wait for the finished nursery to see what we decided on, or should I say...I decided on..hehe.
I hope everyone had a very Happy New Year!
Love Lakai and Nic
PS Congrats to Penny, Matt and BETTY! Penny gave birth to her stunning baby girl early on Dec 26th..which is so odd because we were due around the same time. And we met through a baby forum..and we both live here in Vancouver..anyways...Congrats to the new Christmas baby! And the happy new Mommy and Dad of course! =)
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The Un-Update...
06 January 2009 at 03:16
I do not really want to write this update..I do so with huge tears welling up in my eyes so my typing may be off, sorry.
Before I go any further, Lakai is ok. No need to worry.
It's 2:43 am and Lakai was just re-intubated after being on CPAP for the third time since noon yesterday (Jan 5th). He had the ENT (throat doctor) check him out in the OR and the results were as follows...tracheomalacia (basically a floppy trach), a paralyzed left vocal cord (probably due to his early PDA surgery which we were informed was a risk) and a third thing, which honestly at this point I just cannot remember what it was...but the doctor said it was a small mass that shouldn't "be an issue". Granuloma..that was the third thing.
The doctor said that the vocal cord could get better..
But the floppy trach thing does worry be deeply. I typed it into "google" and all these sites about kids with tracheotomies popped up, which for some reason was something I researched a few weeks into this roller coaster..for no real reason. I just kept reading..
The internet is truly a dangerous thing sometimes, as is the mind.
How does such a perfectly presented wrapping have such issues inside?
Honestly at this point I am just drained. I spent two days at home before yesterday (Jan 5th) asleep and sick with mastitis, which is not fun. Just trust me, don't look it up.. if you do not know what is! It has to do with milk..and breasts..enough said.
I don't know where to pull the strength from to do this again, every time he fails it makes you wonder..makes your mind travel off into places you do not want it. Its impossible to not ask "will he ever get off this damn thing" as his dad asked after hearing he was back on the old vent.
I know the doctors say that the old vent is better then him failing on CPAP, but there is something about it that just makes it seem so horrible. Maybe its the fact that we feel so trapped by it. Like we are in a vicious circle and will never get out or off it!
How does his floppy trach heal if he has to be vented for longer...it caused this condition in the first place (most likely)?
But how do you get off the vent if he cannot tire himself to the point being unable to breath properly on CPAP?
I doubt I will ever be able to sleep until I know everything is ok past 3:30am with him around...because he always does this type of thing really early in the morning, but never after 3am.
I just want him home. I want to be able to walk into his room and see him in there...not in a crib in the NICU..on the same vent (that I utterly HATE right now). I just want to feel some normality out of what is suppose to be such a joyous time in ones life.
Right now all I feel is the tears stinging my cheeks, my nose getting stuffed up, a lump growing in my throat and my heart bursting with love.
Sunshine clouded by the storm...
I meant to mention this a few days ago but somehow it was lost in translation.....Last Friday when Lakai was suppose to receive his extubation but was bumped, I stayed with him while Kyle went to wish his friend a Happy Birthday (Happy belated B-day Jeremy!). He was VERY awake for most of our visit, Lakai not Kyle or Jer. =) And I was talking to him, saying my normal things like "Aren't you handsome?", "Heey/Helllloooooo/Hiiiiiiii Bud.." "I love you"..and he was sort of just watching me. Or trying too, it's pretty hard to focus on one thing let alone a talking person when you are not suppose to be seeing anything yet.
But anyways..
When I got to "I love you" he broke into this HUGE smile..I mean the kind babies have when they just see their missing parent after they return from being absent, or when something really wonderful happens to them. His tongue sort of curled back in his wide open grinning little mouth, his cheeks went all "chipmunk" like mine do when I smile (hence why I rarely smile with my teeth showing!) and his eyes went all swinty like his dads do..or mine do because my/our huge nut smugglers poof out like we are packing walnuts!
All silliness aside, it was the single best moment of my life. Sorry Kyle, I love you...but you will understand when it happens to you! =) I love you! It's just different some how and any parent can understand that. And knows why it's not really offensive to say "single best moment"..because this moment is just "different".
I, of course starting crying..almost whaling...almost! He continued to smile at other random things I said but the smile was not the same. He didn't light up the same way..he still shone! But it just felt different, the timing was off.
Who knew complete love resides in a smile?
=)
Top Ten Reason Lakai is going to be Trouble!!
10. He decided to make a very early appearance into this world despite all efforts to keep him where he belonged for a few more months..
9. He has never not been able to eat (which is amazing since he shouldn't be eating for another 3 months..)..unless the doctors nixed his feeds due to it interfering with another procedure going on. Food gives him fuel to kick up a fuss!
8. He has to wear taped on mittens or be "straight jacketed" by a blanket in order to keep his "busy boy hands" under control.
7. He can wiggle out of the best straight jacket'ing effort by the craftiest of nurses.
6. Sometimes instead of smiling he snears..and grasps his hands together..you know that's never a GOOD sign!
5. He rebels against authority, be it trying to help with suctioning by grabbing the suction...or by pooping and pooping..sometimes with such force it flies..just because you lifted his legs to pull out his dirty diaper!
4. He wears an ankle bracelet (ALREADY!) that beeps if he removes it....bad news bear!
3. He has already begun shaving his head.
2. When his nurse today said that "he needed to keep his hands off his tube" he rolled his eyes at her not once but TWICE!
And the number ONE reason Lakai is trouble..
Today when the doctor was talking to me, he was "asleep" in my arms for a cuddle. We never heard a peep from him, he never made any faces or moved beyond breathing. And yet when she said "we would like to think we are on our own schedules, the truth is we are on HIS"...Lakai broke out in this devilish little grin without opening his eyes fully..just letting us know he wasn't sleeping..and we are NOT in charge! The doctor just patted me on the shoulder and gave me her sympathies because I was going to be in trouble with this one!
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And then there was clothes...
14 January 2009 at 01:38
Firstly sorry it's taken me this long to update, I think I have been sucked into the vortex of "things staying the same". But I think I can say with baited breath that things are finally again moving forward.
Lakai was weighing in at 1990g's this morning but I am sure after his milk fest through out the day that he has gained some weight.
He has remained on SiPap (Look here for a very good explanation about SiPap/CPap/BiPap https://en.wikipedia.org/wiki/Positive_airway_pressure) for almost 48 hours now. Maintaining his oxygen at room air, so what you and I breath every day (21%) which is awesome! He is getting two pressures with the mode he is on currently. Help to breath in and out basically would be the simplest way to explain it.
If you are wondering..if you keep up with his updates..he was not actually suppose to be extubated again until sometime next week, if that. But two nights ago at 3am the RT (respiration therapist) retaped his tube to the bar across his mouth holding the tube in place. And a few minutes later, Ivy his nurse heard a "pop" and noticed his bar was lose and the tape was off. Everyone says he was asleep at the time, however I tend to believe he was actually blowing on the tape and maneuvering his tongue around the tape and bar to loosen it.
You know there could be some truth to that when almost everyone who comes to see him flying on his new SiPap machine because they are rooting for him says "Did he self extubated AGAIN?!"
What a bum.
I must say this week has been a lot of ups. I would love to think this is the break in the storm finally, they talk about this phenomenon in the NICU like you might a mythological creature..or maybe a ghost..some believe it, some see it and sadly some never do.
Our latest roommate is believing and seeing it as soon as tomorrow! She and her son Cole are being transferred to Lions Gate here in North Vancouver, where we hope to follow one day very soon. Cole has been a superstar since he joined us in our little room. I am so happy for his family and him!
So...other new things?
Let's see...
Lakai is now wearing clothes. I know how silly that seems to be excited about, let alone title a note with. But it is exciting! Its so neat to see him wearing things we have bought him..although the pictures today that I posted he is wearing hospital issued because the onesies I took him were not washed in time to make the photo op.
Last night I was able to hold him for two hours..mostly because he was one angry little man. He is able to finally attempt to make sound..I say attempt because he isn't really making very much noise at all, no matter how much effort he puts into it. He is so hoarse from the tube being down his throat so long, but also he has swelling and has stridor. And possibly his paralyzed vocal cord could play some what into his current sound issues, but I am told it will get better. Which really makes me happy because I keep having flashes of fear that when he comes home, that I will not be able to hear him at night when we are sleeping and he cries.
I have already started to price out the motion detecting baby monitors that have a pad that lays under the baby and rings off when the baby moves. I think that would be a good device to have with a hoarse baby..ok with ANY baby!
Anyways..enough about the close future.
Today when I went to see my little warrior, he looked awesome. So chubby and pink. He is not working too hard on SiPap and his blood gases are "wonderful" as the doctor says. As they were last night and continue to be through out the night.
I was able to hold him again, mostly because again..he was upset and having a major temper tantrum. Once we were cuddling though, he stayed calm and steady for three hours. I only decided to put him back to bed because I had to pump..I cannot wait to be able to breast feed so I can cut back on being plugged in!
Once we did put him back to bed, he started (of course) freaking out again. I stayed long enough to change his diaper and calm him down a little. But I couldn't hold off any longer. When I came back he was still semi upset. And so Jill our nurse (who I want to point out owns a pittie and is a part of the pittie forum I post on) mentioned it looked like he was "rooting" (basically looking for the nipple). Sure enough he was. She thinks he is ready to breast feed now, but he can't go there until he is low flow..so he is a few steps behind doing that yet.
But we will get there.
So instead of the real boob..we did give him some breast milk via a very small syringe and a couple of a drops on to his purple boob...or his soother.
He loved that. He was sucking so hard, you could actually hear him! I have a feeling now though, he will now expect breast milk every time. Thankfully it was on way to settle him.
Well I think that covers almost everything...
Except if you have noticed me calling Lakai "Lucky" lately it is because one of his new primary nurses Doug calls him that, mostly due to his accent it probably just sounds that way. But either way, it fits. I have a feeling it will stick around for some time!
Also while we are on nurses..we have two other new primary nurses besides Doug (and our original primary Kathrin) who actually asked if they could be Lakai's primaries. Which is pretty nice and makes you sure feel good. Its so nice to have people want to follow your baby through out their stay at the hospital. They said they had grown fond of him. How could we say no?
He is truly in the best place he could be.
He is still on SiPap..its been over a week now and doing awesome!
Some different pictures..(the ones where he has no breathing tubes on is because they take them off twice a day to check him over and weigh him, and we just happen to catch them doing so. And got some pictures..even if they are fuzzy!)
Before the move to Sipap
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Smiles!
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to you all.
