Lakai's story
- Thread starter nkbapbt
- Start date
Hevz
4 beautiful children
- Joined
- Aug 4, 2008
- Messages
- 4,465
- Reaction score
- 0
Wasn't anyone her text buddy????
I so want to give her some support whatever she may be coping with
I'm not on facebook but there's a link to her facebook pics at the beginning of this thread....can anyone here with a facebook account try and contact her or see if there's any updates on her account????
I so want to give her some support whatever she may be coping with
I'm not on facebook but there's a link to her facebook pics at the beginning of this thread....can anyone here with a facebook account try and contact her or see if there's any updates on her account????
S
sparkswillfly
Guest
I cant see her profile without being her friend. I hope she is ok.
redberry3
Love My Little Peek <3
- Joined
- Jul 7, 2008
- Messages
- 5,528
- Reaction score
- 0
I tried searching her on FB but nothing came up. Only the picture links, and when I looked at the comments on the pictures all it showed was that the last comment posted was yesterday....worried a little.
Maybe someone in the 2nd tri would know?
Maybe someone in the 2nd tri would know?
S
sparkswillfly
Guest
I hope its not bad news and shes too upset to come on. I really hope its because shes just busy.
nkbapbt
Double Preemie Momma
- Joined
- Dec 25, 2007
- Messages
- 3,751
- Reaction score
- 0
Hi everyone....
SORRY! I did not mean to scare anyone or have you worry that something awful happened to us. Lakai and I are both doing well. I have posted over from FB my updates..if you want to read them all or just skip to the end..hehe ..since it's a LOT of reading! Either way we are good. Lakai has had some up's and down's but currently he is stable and doing well.
I will try to come over here more often, I am just so beat by the time I get home I sometimes to forget to do everything. I just finally set up my PC today so I could get off the crappy laptop. And I still have boxes galore to unpack from our move..so you can see how busy I am!
I hope everyone is well.
Sorry again =)
Nov 13 -
So today was not a good day...
When we first arrived at the NICU Lakai was surrounded by a lot of nurses preparing to change out his ventilator tube because there was a leak in the old one. It took three doctors to get the second tube down his throat and after it finally went in they had to xray his chest to make sure it was in properly. Which it wasn't, it needed to come out an inch but was otherwise fine.
His lungs are also starting to change there is some signs of chronic lung disease which could mean once he is released from the hospital he could need to be on oxygen for a while or a lot time..
And the worst part? His head ultrasound came back and it sounds like or there is for sure a bleed on the left and right side now...one being a Grade III and the other a Grade IV.
The doctor says its too early to have the neurologist be involved with it. But if there dilation then we will have to talk to them. They are pushing us to remove his life support and let him pass away naturally now.
Basically I don't overly understand and I am not 100% sure I want too. Because it sounds like there is an even higher risk of disabilities now.
I am just going through this totally scared at the moment.
It's really hard to muddle through my feelings and put any certainly on them. I feel like I am loosing ground on my positivity. But I have to remain strong for Lakai.
I am really longing to hold him now because everyday that goes by it's harder and harder. It's very hard to bond through plastic..even though yes I adore and love him...holding him will be a whole different level of bond.
I never thought having a baby would turn out like this. =(
On some positive side, he has gained weight. His birth weight was 710g and he is currently 785g. So thats good. They plan to start his feedings tonight, starting out at 1cc every four hours. Which is a set back feeding wise, but that is because of the fact he just had surgery.
Hopefully it will increase soon.
And get up the 9cc it should be at.
His morphine was also lowered. And he is recovering nicely from his PDA surgery.
He is my sunshine. I just love him so much.
Nov 14 -
So I have come to the conclusion that there is no real information or stats on 23 weekers...the doctor told us today that there is not many 24 weekers, because so sadly enough most parents decide to not offer ICU support to their 23 weekers. I am not going to get into a huge moral debate and express my feelings about this...other than...I really cannot understand why if there is a chance, why you would not take it.
Anyways...
I feel much better today.
The doctor said that with this other bleed, though it was not seen on the first ultrasound; it is not causing her or the other doctors concern for more chance of disabilities or worse. And that the Grade IV was starting to resolve itself slowly but surely. He will have another ultrasound done in 1-2 weeks and a MRI very soon. We have agreed to let him take part in an MRI study which is better for him because he can stay in an incubator for the MRI while other babies not taking part have to go without their incubators.
Again the doctor said that remarkable things take place within the infant brain..and there is just not very much known about preemie brains or IVH bleeds.
Frankly, I think its case to case basis.
I can tell you this much, my little man and I already have our own things...like when I touch his hand, I stroke his palm very carefully and he squeezes my hand repeatedly. Or I gently tickle his tip toes and then put my hand out for him to kick. And to comfort him I tuck his arms across his chest and hold them there, which sounds restrictive but babies love to be swaddled!
I cannot wait to carry him around every where in a sling.
Nov 22 -
So our little handsome man is stable, doing awesome, gaining weight...and is pretty much perfect.
According to his nurses and doctors...."All he needs to do is gain weight, eat and grow"
I mentioned in our last update that he has "changes" in his lungs but it could or could not be "chronic lung disease" or a basic infection that is presenting itself like chronic disease.
I do like the doctors at Children's Hospital however I do feel like we are all learning about Lakai and ALL 24 weeker preemies as we go. Which is fine, and gives me even new sense of hope..because there are discoveries to be made....ideas to be broken...
And come on people, if anyone's baby is going to bust through things..it will be ours!
Our little warrior.
Our perfect little man.
Nov 15 -
So yesterday when I called the morning nurse to get our morning update on Lakai's overnight and current condition, she told me that he had a temperature and they thought a possible infection. But they had taken blood, urine and saliva samples for testing. And had started him antibiotics before the results came back, just in case.
He was also getting a blood transfusion due to his red blood cells being low.
On the upside, he was off his insulin and getting 2cc's of breast milk every two hours.
And other than the infection he was stable and doing well.
But in bigger news...When he was born his eyes were fused shut, but yesterday?! He opened them for the first time! His Grandma and Dad saw him do it first, which of course made his proud Daddy cry like a baby...his words not mine! But as soon as I was done in the "pump room" I saw his beautiful eyes for the time...open! It was so amazing, I had a hard time holding back the tears then. But later when I was alone with Lakai, he opened them again and I quickly opened his cocoon to hold his hand and talk to him...I swear he was trying to focus on where the voice was coming from!
I couldn't hold the tears back then.
Nov 16th -
Today was a good day..Lakai's temperature was back to normal and there were no other signs of the infection (which he did have). He is stable and doing great!
He is up to 4cc's at his feedings..so I hope the herbs Im taking will help increase my supply, I have a feeling once he really gets going he will be an eating machine!
Lakai currently weighs..776 grams! 66 more than when he was born! Way to go little mouse!!
They have taken out the line to his umbilical cord which means I could possibly get to hold him in the next few days, but as much as I want to hold him (at this point I would be willing to sell my husband..for the chance..hehe) I also want to make sure he is stable enough for it to happen.
Ruth and his Grandpa were there to visit today. Which was very nice.
This was only the second time Ruth has seen him, because she was sick. So its great she's now better and able to see little Lakai again.
When Kyle just called for our nightly update from the night nurse, she told him he was stable and doing well. However, his blood sugar was up to 9 again...which really worries me because now that his line in the cord is gone. If they need to restart insulin they will need to put an arterial line in or poke him every two hours. I hope that the increased feedings will help to regulate his blood sugar.
I know I have said it before but I cannot express how lucky I feel to have such wonderful support from everyone on here, our families, our friends and most of all my parents!
Tomorrow we are moving into our new apartment. I cannot wait to start painting and decoration Lakai's room. He is going to have the best room any baby could ever ask for!!
Ok...I also cannot wait to start painting the whole house. I have never had a place where I could paint whatever colours I wanted..so it's VERY exciting!
Thanks everyone for the support and love! Nicola, Kyle and Lakai!
x0x0x0x0
So the last few days have been very hectic, mostly Monday was the really busy day we moved all day long. And never made it to see Lakai, which was terrible. I cried most of the night because we had not gone and yet I was still moving in to our new place and couldn't just up and leave. Especially because we had the rental truck..and Eli helping us move. Thank you Eli!
And my mom who got us a great new bed set. Its stunning!
Nov 18th & 19th -
There has not been very much change lately. I suppose no big news is good news. But there are some changes that are happening which are not great and yet they are very typical of micro preemies. He has some negative changes happening in his lungs. He has had "very abnormal" chest xrays which tell that there is some very early indications of chronic lung disease. He is very heavily ventilated and sedated with morphine because of the need for ventilation. He was up to the 70's for oxygen and now is in the 40's so he is jumping all over the place.
He also does not like noise or being handled, so they have decided today to move him and another micro preemie, Emma (23 weeker) into a private room together, away from the very loud and busy main NICU.
Other than that he has been gaining weight, but there was a small loss of 8g's and when every gram helps..that matters.
His infection seems to be doing better and he is almost done his antibiotics.
There is not much else going on right now..
I will keep you guys updated. Sorry for the delay, but we only have one computer set up currently.
Well the last few days have been fairly quiet, Lakai's ventilator was switched to a high frequency oscillating ventilator yesterday.
High Frequency Oscillatory Ventilation (HFOV)
High Frequency Oscillatory Ventilation is characterized by high respiratory rates up to 15 hertz (900 breaths per minute). The rates used vary widely depending upon patient type and disease condition. In HFOV the pressure oscillates around the constant distending pressure (equivalent to the PEEP). Thus gas is pushed into the lung during inspiration, and then pulled out during expiration. HFOV generates very low tidal volumes that are generally less than the dead space of the lung. Tidal volume is dependent on endotrachial tube size, power and hertz. Different mechanisms of gas transfer come into play in HFOV compared to normal mechanical ventilation. It is often used in patients who have hypoxia refractory to normal mechanical ventilation: severe ARDS, ALI and other oxygenation issues that cannot be corrected with conventional ventilation. In some neonatal patients HFOV may be used as the first-line ventilator due to the high susceptibility of the premature infant to lung injury from conventional ventilation.
I must admit I do not like seeing him being shaken like that, even though it is for his own good. I suppose it just looks more agitating then anything else. Which he is. They had to increase his morphine because he is fighting his ventilator. Which would be helpful if he was more ready to come off of it and to be placed on CPAP but currently his lungs are still too premature.
However that being said, there is already some talk about weaning him off the ventilator and making the switch sooner than later.
It's not really funny (yet sort of is) but last night when Kyle called about him, the doctor was telling him that Lakai has a temper and when he is mad he holds his breath. GREAT! He is having enough problems with his breathing...and he is going to hold his breath on top of things because he is pissed off?!
That's my son...(note: I never did that when I was little and didn't get my way...I don't recall at least).
My son. Two words I never thought I would say..he truly is a dream come true, no matter what path he took to get here.
I can't imagine loving him anymore than I do and yet I know there is a world more coming, like a flooding dam about to burst...and it's going to burst the second I get to finally hold him.
I cannot properly explain the amount of agony I feel just sitting there peaking through his little incubator cover, staring at him and then watching the monitors just case my spying on him is stressing him out. Because sometimes too much stimulation from light, sounds and even touching makes his stats going all over the place. Which is not good.
It's an impossible thing to watch your son struggle for life (and yes, he is showing the world what he is made of...) he is still so tiny and fragile and as his mom I just want to hold him. And yet I can't.
It is not natural.
Anyone who is reading this with kids...I know I don't have to tell you this, but cherish the chances you get to hug your kids. Do it more often, do it for me while I cannot hug mine. =)
Chase them down if you have too.
Other than the new ventilator, there isn't much health wise going on with Baby Batman in his new bat cave.
They have taken out his arterial line because it was not being used. They have stopped giving him this yellow IV fluid, which the name is totally escaping me at 2:52 am....Don't ask why I am still up. He was getting Lasix to reduce the fluid in his lungs caused by the BPD.
Which scares me because all my experience with Lasix comes from being around horses, and racehorses..and I have heard some terrible side effects that come from this drug in horses. The doctor did assure me it was not the same in preemies.
His blood sugar is slowly coming down. And he has remained off Insulin for a couple of days solid now, thankfully!!
He is so active, I can't believe it sometimes. He is always moving, kicking, stretching and sometimes having what look like tiny temper tantrums.
He already has quite the little personality forming, he has defendant likes and dislikes..he likes being on his right side over his left, he likes to hold on to things (like his tube, IV, blanket, fingers, anything he can cling too...), he likes to be clean (no dirty diapers) and he lets you know, he likes the peace and quiet, he likes the darkness, he likes to feel confined and he seems to like eating.
Since he is up to his full feeds of 10cc's of breast milk every two hours.
He also likes to hold his breath when things do not go his way. He loves his hands/arms up by his face.
He dislikes well the opposite of most of the things above..clearly!
I must admit I was checking out his hair today, which is getting longer and longer...I think he may have quite the do' by the time he comes home. But anyways...I think his hair might lighter than everyone first thought, while it still looks fairly dark..both Kyle and I noticed that it's lighter than before. Maybe because it is growing..
Another thing is, his eyebrows are fairly light...almost darkish red. I think I may have a red head on my hands after all...Even though I said for so long and so strongly that I did not want a redhead, frankly he can have pink hair with split pea green tips and stripes for all I care now.
I suppose I should go to sleep since it's 3am and I am just starting to get sleepy.
That was a long update for not having very much to update about. I guess I just needed to type.
Thank you to everyone for all the kind wishes, positive thoughts, love and support.
Nic, Kyle, Lakai, Jaeden and Huck.
xo xo xo
I love you Lakai!
Nov 24 -
Well there is not that much going on. How does that happen when you have a premature baby in the NICU?
I am not really sure however I am certainly not going to ask that question more then that once.
Lakai is has been stable and just doing his thing for the last couple of days. He is nearly TWO pounds, he is a couple of grams shy right now..but I think by the end of the week, if not sooner he will be there. He is on pump continuous feeds as of yesterday because he was having issues keeping his EBM (breast milk) down and had thrown up twice. But has not since they switched the method of feeding him.
He has had all but one IV removed and is now getting morphine orally instead of through the IV line. The doctors were talking about starting to cut back on that today, which is good news.
The RT also said that they have weaned him slightly from his HFOV and they may switch him back to normal vent in the next few days. In order to challenge him to breath more on his own.
I really would like to see his morphine cut back, or stopped...because it supresses breathing but I also do not want to see him in pain or should I say peeved because of the vent. It's a catch 22 situation. You need to keep him calm and there are not that many ways to go about this, but the method to do this..affects his breathing.
You just cannot win.
I am a little excited that they are talking about switching him back to normal vent because the nurse said that could mean we could hold him. Which would be WONDERFUL since I have not yet. And as of Sunday this week...he is a MONTH old. Can you tell how frustrated I am getting?
I, of course do not want to push him either. But studies have shown that babies who get skin to skin contact tend to have reduced stress, less destats and better breathing. Hello..let me hold my son. =)
I do not have much else to report right now.
Nov 26 -
Well Lakai's head ultrasound was suppose to be done on Monday...but it was finally performed today and there was good news. And some sort of upsetting news...
Let me explain.
As some of you may remember I previously mentioned that Lakai had a bilaterial bleed, a Grade III on his left side and a Grade IV on the right side. It seems that "brain" doctor that we met with today did not see a Grade III bleed at all and thinks there could possibly be a tiny amount of old blood from the right side that may have leaked on to the left side. But there is no Grade III bleed on the left side.
That is my upsetting news because I am clearly some what upset that we have both been so worried about the fact our baby had two very serious bleeds. But I suppose the bottom line is, he only has the Grade IV bleed.
And while it is a serious bleed, it is doing very well. It is starting to resolve itself and while right now we cannot know the outcome, if there will be any resulting damage to the brain because of the blood. We do know that he is not having any dialation or "water on the brain". Both are very good things.
He is just so strong and such a little fighter, I am not sure some times where he gets it from.
I should also mention that the leaking blood does not increase Lakai's chances of having some problems when he is older. Which is good for him. =)
I do not know what else to type at this point, mostly because typing on this old laptop is VERY annoying because the keys stick. And it makes typing almost impossible.
Everything else with Lakai is stable and normal. He is off all his IV's and is at full feedings, with no issues from that.
He is getting some supplements to help him gain weight and grow bigger!
So that is about it for now.
Nov 28 -
Happy Friday everyone!
I do not have a whole lot to write about today. We are struggling with some common preemie issues right now the two biggest being: BPD (chronic lung diease) and poor growth, which is fairly common combined with BPD.
Gen: You asked some questions on my last note, which I did not ignore...I just did not have the answers then for you. I have some now, hopefully I can remember them all! His oxygen is 40% and he having quiet a few destats the last two days *sigh* But its partially because he is so active. By active I mean a bit of a holy terror! He can lift up his bum when he is on his tummy (which is now his favorite position) by pushing his legs into his bed.
So because of his activities his morphine which was dropped yesterday is now back to what it was before. *SIGH*
Regarding switching him to CPAP (I think you asked that?!) the most they are currently toying with is switching him back to the vent he was on before. But not for a few weeks.
He can be on vent for however long he needs but typically if they are not able to start turning it down in say two - three weeks from the last "wean" then that would be when they would start to worry.
So my favorite doctorJenny said that they have been giving him a bit of a rest this week. And they will start to wean him a little next week.
She also said that there is a very small chance that the tube could have some affect on his vocal cords, but at most it would be that his voice could end up hoarse. But aren't husky voices in men typically a good thing? Trying to see the bright side of everything, you have too...or else it will drive you CRAZY!
They do not typically do trechs in preemies unless its a VERY last resort.
I think that was all your questions...ask again if it wasn't because I made a list of them and asked Jenny today. =)
Back to our regular programming....
He is officially 2 grams over 2lbs, at a whopping 909grams! YAY! I thought that was good, but the doctors are a little considered because his growth has flattened out the last week or so. They have added some extra calories via formula and other supplements in order to fatten him up.
I can already see some difference. He feels much more solid when I touch him.
OH how could I forget?! So yesterday when I was spying on him in his little home, I noticed with the way the light was shining in, that he may in fact have some red to his hair. It looks black but the light was either showing some red...or playing tricks with my mind. I guess only time will tell.
=)
Nov 30 -
Lakai is a month old today...way to go our little warrior.
It has not been an easy month by any means, frankly I am not sure some times how we all made it here. We have had ups and downs...and our current state, just steady and even. Lakai is doing well, stable and growing but his lungs sadly are not showing very much improvement. Which is normal for a preemie so small and early but it is still frustrating. His oxygen is up to 50% today and he is not destating anymore.
I am hoping this is just a period of set back, that the doctor warned us about when we were in the "honeymoon" period when his lungs were still doing well.
I want to write more but I am utterly beat, I can hardly focus right now. I will try again tomorrow.
I hope everyone had a great weekend.
Dec 1 (all up to date now...) -
Today feels like a gray and bleak day, maybe it's just me or maybe it's just this weather. Gotta love Vancouver! Though I must admit the fog last night was very cool, you could only see the very tops of the buildings downtown poking over the thick heavy layer of fog. The Lions Gate bridge looked a little like pointy cupcakes complete with cherries on the top, poking out of thick fluffy icing like fog.
Lakai is off his HFOV vent and back on regular vent, which is so weird and yet great. Weird because yesterday they were talking like it was WEEKS away, not a mere 24 hours. Things really do change moment to moment in the NICU.
*Note if I miss letters or have bad spelling in this note forgive me, this old laptop of Kyle's is craptastic and the keyboard is shot. I could set up my PC but that just seems to make too much sense!
So lil' monkey Lakai (I have to stop calling him that, he is covered in lanugo (fine hair) but thats perfectly normal for preemies..even some term babies but he is not a monkey...=) ) is pretty much even still. Stable, growing...he is up over 1000 grams but it is a little water weight as well. His sodium is high, but thats again..normal.
How can I use the word normal so much when talking about Lakai and this situation? There is very little normal about it.
I watched him today getting his blood gases done, something that happens a couples times a day..and it's a poke with a needle to his heel. And I could barely watch, you could see him crying even though because of his vent tube you cannot hear him. And it just broke my heart and made me think about how very unnatural this all is. I have been keeping myself going by pretending that what is being done to him is sort of a mechanical version of a womb, but after seeing the heel poke...I was reminded how truly unlike a real womb it is. If he was still inside of me, he wouldn't be on morphine, hooking up to a vent and wouldn't have to suffer things like needles and blood transfusions.
Its impossible to not be angry with your body and yourself in some ways when this happens to you. You can hear and possible agree that "its not your fault" but it was me that was sick. And it was my body that caused all this to happen. Its very hard to not feel guilty, especially when your baby is suffering as a result of it all. I do not mean to sound sorry for myself, because I am sure there are women out there reading this who possibly couldn't have kids or maybe like myself suffered a miscarriage..you feel the same way I am sure. I'm sorry.
I should stray from this subject, I have a feeling it's one that I could dwell on which is not healthy or good for anyone. And it's pretty much a moot point now.
I had to laugh a little today, I bought Lakai burp cloths to be used as little blankets..because they were using face cloths before and they are too rough for my liking. But today he was wrapped up in one like a little burrito. For most babies it may cover their bums for him it's a complete head to toe blanket! Even though he is now 2lbs..he is still so small.
His blood work finally came back and the temperature he had a few nights ago, turned out to be nothing. No infection, thankfully!!
He still remains off his IV's and insulin. He is still getting supplements in his feeds though, but he needs the calories in order to grow big and strong!
Other than that, like the last few updates there is not too much to report!
No news..is good news.....
You have no idea how true those words have become this past month!
24 days till Christmas people....
PS The nurse today mentioned that we MAY be able to hold him as soon as tomorrow...I won't hold my breath though because we have heard that before, numerous times. But here's to hoping Xmas will come early for us and we will finally get to hold our son.
SORRY! I did not mean to scare anyone or have you worry that something awful happened to us. Lakai and I are both doing well. I have posted over from FB my updates..if you want to read them all or just skip to the end..hehe ..since it's a LOT of reading! Either way we are good. Lakai has had some up's and down's but currently he is stable and doing well.
I will try to come over here more often, I am just so beat by the time I get home I sometimes to forget to do everything. I just finally set up my PC today so I could get off the crappy laptop. And I still have boxes galore to unpack from our move..so you can see how busy I am!
I hope everyone is well.
Sorry again =)
Nov 13 -
So today was not a good day...
When we first arrived at the NICU Lakai was surrounded by a lot of nurses preparing to change out his ventilator tube because there was a leak in the old one. It took three doctors to get the second tube down his throat and after it finally went in they had to xray his chest to make sure it was in properly. Which it wasn't, it needed to come out an inch but was otherwise fine.
His lungs are also starting to change there is some signs of chronic lung disease which could mean once he is released from the hospital he could need to be on oxygen for a while or a lot time..
And the worst part? His head ultrasound came back and it sounds like or there is for sure a bleed on the left and right side now...one being a Grade III and the other a Grade IV.
The doctor says its too early to have the neurologist be involved with it. But if there dilation then we will have to talk to them. They are pushing us to remove his life support and let him pass away naturally now.
Basically I don't overly understand and I am not 100% sure I want too. Because it sounds like there is an even higher risk of disabilities now.
I am just going through this totally scared at the moment.
It's really hard to muddle through my feelings and put any certainly on them. I feel like I am loosing ground on my positivity. But I have to remain strong for Lakai.
I am really longing to hold him now because everyday that goes by it's harder and harder. It's very hard to bond through plastic..even though yes I adore and love him...holding him will be a whole different level of bond.
I never thought having a baby would turn out like this. =(
On some positive side, he has gained weight. His birth weight was 710g and he is currently 785g. So thats good. They plan to start his feedings tonight, starting out at 1cc every four hours. Which is a set back feeding wise, but that is because of the fact he just had surgery.
Hopefully it will increase soon.
And get up the 9cc it should be at.
His morphine was also lowered. And he is recovering nicely from his PDA surgery.
He is my sunshine. I just love him so much.
Nov 14 -
So I have come to the conclusion that there is no real information or stats on 23 weekers...the doctor told us today that there is not many 24 weekers, because so sadly enough most parents decide to not offer ICU support to their 23 weekers. I am not going to get into a huge moral debate and express my feelings about this...other than...I really cannot understand why if there is a chance, why you would not take it.
Anyways...
I feel much better today.
The doctor said that with this other bleed, though it was not seen on the first ultrasound; it is not causing her or the other doctors concern for more chance of disabilities or worse. And that the Grade IV was starting to resolve itself slowly but surely. He will have another ultrasound done in 1-2 weeks and a MRI very soon. We have agreed to let him take part in an MRI study which is better for him because he can stay in an incubator for the MRI while other babies not taking part have to go without their incubators.
Again the doctor said that remarkable things take place within the infant brain..and there is just not very much known about preemie brains or IVH bleeds.
Frankly, I think its case to case basis.
I can tell you this much, my little man and I already have our own things...like when I touch his hand, I stroke his palm very carefully and he squeezes my hand repeatedly. Or I gently tickle his tip toes and then put my hand out for him to kick. And to comfort him I tuck his arms across his chest and hold them there, which sounds restrictive but babies love to be swaddled!
I cannot wait to carry him around every where in a sling.
Nov 22 -
So our little handsome man is stable, doing awesome, gaining weight...and is pretty much perfect.
According to his nurses and doctors...."All he needs to do is gain weight, eat and grow"
I mentioned in our last update that he has "changes" in his lungs but it could or could not be "chronic lung disease" or a basic infection that is presenting itself like chronic disease.
I do like the doctors at Children's Hospital however I do feel like we are all learning about Lakai and ALL 24 weeker preemies as we go. Which is fine, and gives me even new sense of hope..because there are discoveries to be made....ideas to be broken...
And come on people, if anyone's baby is going to bust through things..it will be ours!
Our little warrior.
Our perfect little man.
Nov 15 -
So yesterday when I called the morning nurse to get our morning update on Lakai's overnight and current condition, she told me that he had a temperature and they thought a possible infection. But they had taken blood, urine and saliva samples for testing. And had started him antibiotics before the results came back, just in case.
He was also getting a blood transfusion due to his red blood cells being low.
On the upside, he was off his insulin and getting 2cc's of breast milk every two hours.
And other than the infection he was stable and doing well.
But in bigger news...When he was born his eyes were fused shut, but yesterday?! He opened them for the first time! His Grandma and Dad saw him do it first, which of course made his proud Daddy cry like a baby...his words not mine! But as soon as I was done in the "pump room" I saw his beautiful eyes for the time...open! It was so amazing, I had a hard time holding back the tears then. But later when I was alone with Lakai, he opened them again and I quickly opened his cocoon to hold his hand and talk to him...I swear he was trying to focus on where the voice was coming from!
I couldn't hold the tears back then.
Nov 16th -
Today was a good day..Lakai's temperature was back to normal and there were no other signs of the infection (which he did have). He is stable and doing great!
He is up to 4cc's at his feedings..so I hope the herbs Im taking will help increase my supply, I have a feeling once he really gets going he will be an eating machine!
Lakai currently weighs..776 grams! 66 more than when he was born! Way to go little mouse!!
They have taken out the line to his umbilical cord which means I could possibly get to hold him in the next few days, but as much as I want to hold him (at this point I would be willing to sell my husband..for the chance..hehe) I also want to make sure he is stable enough for it to happen.
Ruth and his Grandpa were there to visit today. Which was very nice.
This was only the second time Ruth has seen him, because she was sick. So its great she's now better and able to see little Lakai again.
When Kyle just called for our nightly update from the night nurse, she told him he was stable and doing well. However, his blood sugar was up to 9 again...which really worries me because now that his line in the cord is gone. If they need to restart insulin they will need to put an arterial line in or poke him every two hours. I hope that the increased feedings will help to regulate his blood sugar.
I know I have said it before but I cannot express how lucky I feel to have such wonderful support from everyone on here, our families, our friends and most of all my parents!
Tomorrow we are moving into our new apartment. I cannot wait to start painting and decoration Lakai's room. He is going to have the best room any baby could ever ask for!!
Ok...I also cannot wait to start painting the whole house. I have never had a place where I could paint whatever colours I wanted..so it's VERY exciting!
Thanks everyone for the support and love! Nicola, Kyle and Lakai!
x0x0x0x0
So the last few days have been very hectic, mostly Monday was the really busy day we moved all day long. And never made it to see Lakai, which was terrible. I cried most of the night because we had not gone and yet I was still moving in to our new place and couldn't just up and leave. Especially because we had the rental truck..and Eli helping us move. Thank you Eli!
And my mom who got us a great new bed set. Its stunning!
Nov 18th & 19th -
There has not been very much change lately. I suppose no big news is good news. But there are some changes that are happening which are not great and yet they are very typical of micro preemies. He has some negative changes happening in his lungs. He has had "very abnormal" chest xrays which tell that there is some very early indications of chronic lung disease. He is very heavily ventilated and sedated with morphine because of the need for ventilation. He was up to the 70's for oxygen and now is in the 40's so he is jumping all over the place.
He also does not like noise or being handled, so they have decided today to move him and another micro preemie, Emma (23 weeker) into a private room together, away from the very loud and busy main NICU.
Other than that he has been gaining weight, but there was a small loss of 8g's and when every gram helps..that matters.
His infection seems to be doing better and he is almost done his antibiotics.
There is not much else going on right now..
I will keep you guys updated. Sorry for the delay, but we only have one computer set up currently.
Well the last few days have been fairly quiet, Lakai's ventilator was switched to a high frequency oscillating ventilator yesterday.
High Frequency Oscillatory Ventilation (HFOV)
High Frequency Oscillatory Ventilation is characterized by high respiratory rates up to 15 hertz (900 breaths per minute). The rates used vary widely depending upon patient type and disease condition. In HFOV the pressure oscillates around the constant distending pressure (equivalent to the PEEP). Thus gas is pushed into the lung during inspiration, and then pulled out during expiration. HFOV generates very low tidal volumes that are generally less than the dead space of the lung. Tidal volume is dependent on endotrachial tube size, power and hertz. Different mechanisms of gas transfer come into play in HFOV compared to normal mechanical ventilation. It is often used in patients who have hypoxia refractory to normal mechanical ventilation: severe ARDS, ALI and other oxygenation issues that cannot be corrected with conventional ventilation. In some neonatal patients HFOV may be used as the first-line ventilator due to the high susceptibility of the premature infant to lung injury from conventional ventilation.
I must admit I do not like seeing him being shaken like that, even though it is for his own good. I suppose it just looks more agitating then anything else. Which he is. They had to increase his morphine because he is fighting his ventilator. Which would be helpful if he was more ready to come off of it and to be placed on CPAP but currently his lungs are still too premature.
However that being said, there is already some talk about weaning him off the ventilator and making the switch sooner than later.
It's not really funny (yet sort of is) but last night when Kyle called about him, the doctor was telling him that Lakai has a temper and when he is mad he holds his breath. GREAT! He is having enough problems with his breathing...and he is going to hold his breath on top of things because he is pissed off?!
That's my son...(note: I never did that when I was little and didn't get my way...I don't recall at least).
My son. Two words I never thought I would say..he truly is a dream come true, no matter what path he took to get here.
I can't imagine loving him anymore than I do and yet I know there is a world more coming, like a flooding dam about to burst...and it's going to burst the second I get to finally hold him.
I cannot properly explain the amount of agony I feel just sitting there peaking through his little incubator cover, staring at him and then watching the monitors just case my spying on him is stressing him out. Because sometimes too much stimulation from light, sounds and even touching makes his stats going all over the place. Which is not good.
It's an impossible thing to watch your son struggle for life (and yes, he is showing the world what he is made of...) he is still so tiny and fragile and as his mom I just want to hold him. And yet I can't.
It is not natural.
Anyone who is reading this with kids...I know I don't have to tell you this, but cherish the chances you get to hug your kids. Do it more often, do it for me while I cannot hug mine. =)
Chase them down if you have too.
Other than the new ventilator, there isn't much health wise going on with Baby Batman in his new bat cave.
They have taken out his arterial line because it was not being used. They have stopped giving him this yellow IV fluid, which the name is totally escaping me at 2:52 am....Don't ask why I am still up. He was getting Lasix to reduce the fluid in his lungs caused by the BPD.
Which scares me because all my experience with Lasix comes from being around horses, and racehorses..and I have heard some terrible side effects that come from this drug in horses. The doctor did assure me it was not the same in preemies.
His blood sugar is slowly coming down. And he has remained off Insulin for a couple of days solid now, thankfully!!
He is so active, I can't believe it sometimes. He is always moving, kicking, stretching and sometimes having what look like tiny temper tantrums.
He already has quite the little personality forming, he has defendant likes and dislikes..he likes being on his right side over his left, he likes to hold on to things (like his tube, IV, blanket, fingers, anything he can cling too...), he likes to be clean (no dirty diapers) and he lets you know, he likes the peace and quiet, he likes the darkness, he likes to feel confined and he seems to like eating.
Since he is up to his full feeds of 10cc's of breast milk every two hours.
He also likes to hold his breath when things do not go his way. He loves his hands/arms up by his face.
He dislikes well the opposite of most of the things above..clearly!
I must admit I was checking out his hair today, which is getting longer and longer...I think he may have quite the do' by the time he comes home. But anyways...I think his hair might lighter than everyone first thought, while it still looks fairly dark..both Kyle and I noticed that it's lighter than before. Maybe because it is growing..
Another thing is, his eyebrows are fairly light...almost darkish red. I think I may have a red head on my hands after all...Even though I said for so long and so strongly that I did not want a redhead, frankly he can have pink hair with split pea green tips and stripes for all I care now.
I suppose I should go to sleep since it's 3am and I am just starting to get sleepy.
That was a long update for not having very much to update about. I guess I just needed to type.
Thank you to everyone for all the kind wishes, positive thoughts, love and support.
Nic, Kyle, Lakai, Jaeden and Huck.
xo xo xo
I love you Lakai!
Nov 24 -
Well there is not that much going on. How does that happen when you have a premature baby in the NICU?
I am not really sure however I am certainly not going to ask that question more then that once.
Lakai is has been stable and just doing his thing for the last couple of days. He is nearly TWO pounds, he is a couple of grams shy right now..but I think by the end of the week, if not sooner he will be there. He is on pump continuous feeds as of yesterday because he was having issues keeping his EBM (breast milk) down and had thrown up twice. But has not since they switched the method of feeding him.
He has had all but one IV removed and is now getting morphine orally instead of through the IV line. The doctors were talking about starting to cut back on that today, which is good news.
The RT also said that they have weaned him slightly from his HFOV and they may switch him back to normal vent in the next few days. In order to challenge him to breath more on his own.
I really would like to see his morphine cut back, or stopped...because it supresses breathing but I also do not want to see him in pain or should I say peeved because of the vent. It's a catch 22 situation. You need to keep him calm and there are not that many ways to go about this, but the method to do this..affects his breathing.
You just cannot win.
I am a little excited that they are talking about switching him back to normal vent because the nurse said that could mean we could hold him. Which would be WONDERFUL since I have not yet. And as of Sunday this week...he is a MONTH old. Can you tell how frustrated I am getting?
I, of course do not want to push him either. But studies have shown that babies who get skin to skin contact tend to have reduced stress, less destats and better breathing. Hello..let me hold my son. =)
I do not have much else to report right now.
Nov 26 -
Well Lakai's head ultrasound was suppose to be done on Monday...but it was finally performed today and there was good news. And some sort of upsetting news...
Let me explain.
As some of you may remember I previously mentioned that Lakai had a bilaterial bleed, a Grade III on his left side and a Grade IV on the right side. It seems that "brain" doctor that we met with today did not see a Grade III bleed at all and thinks there could possibly be a tiny amount of old blood from the right side that may have leaked on to the left side. But there is no Grade III bleed on the left side.
That is my upsetting news because I am clearly some what upset that we have both been so worried about the fact our baby had two very serious bleeds. But I suppose the bottom line is, he only has the Grade IV bleed.
And while it is a serious bleed, it is doing very well. It is starting to resolve itself and while right now we cannot know the outcome, if there will be any resulting damage to the brain because of the blood. We do know that he is not having any dialation or "water on the brain". Both are very good things.
He is just so strong and such a little fighter, I am not sure some times where he gets it from.
I should also mention that the leaking blood does not increase Lakai's chances of having some problems when he is older. Which is good for him. =)
I do not know what else to type at this point, mostly because typing on this old laptop is VERY annoying because the keys stick. And it makes typing almost impossible.
Everything else with Lakai is stable and normal. He is off all his IV's and is at full feedings, with no issues from that.
He is getting some supplements to help him gain weight and grow bigger!
So that is about it for now.
Nov 28 -
Happy Friday everyone!
I do not have a whole lot to write about today. We are struggling with some common preemie issues right now the two biggest being: BPD (chronic lung diease) and poor growth, which is fairly common combined with BPD.
Gen: You asked some questions on my last note, which I did not ignore...I just did not have the answers then for you. I have some now, hopefully I can remember them all! His oxygen is 40% and he having quiet a few destats the last two days *sigh* But its partially because he is so active. By active I mean a bit of a holy terror! He can lift up his bum when he is on his tummy (which is now his favorite position) by pushing his legs into his bed.
So because of his activities his morphine which was dropped yesterday is now back to what it was before. *SIGH*
Regarding switching him to CPAP (I think you asked that?!) the most they are currently toying with is switching him back to the vent he was on before. But not for a few weeks.
He can be on vent for however long he needs but typically if they are not able to start turning it down in say two - three weeks from the last "wean" then that would be when they would start to worry.
So my favorite doctorJenny said that they have been giving him a bit of a rest this week. And they will start to wean him a little next week.
She also said that there is a very small chance that the tube could have some affect on his vocal cords, but at most it would be that his voice could end up hoarse. But aren't husky voices in men typically a good thing? Trying to see the bright side of everything, you have too...or else it will drive you CRAZY!
They do not typically do trechs in preemies unless its a VERY last resort.
I think that was all your questions...ask again if it wasn't because I made a list of them and asked Jenny today. =)
Back to our regular programming....
He is officially 2 grams over 2lbs, at a whopping 909grams! YAY! I thought that was good, but the doctors are a little considered because his growth has flattened out the last week or so. They have added some extra calories via formula and other supplements in order to fatten him up.
I can already see some difference. He feels much more solid when I touch him.
OH how could I forget?! So yesterday when I was spying on him in his little home, I noticed with the way the light was shining in, that he may in fact have some red to his hair. It looks black but the light was either showing some red...or playing tricks with my mind. I guess only time will tell.
=)
Nov 30 -
Lakai is a month old today...way to go our little warrior.
It has not been an easy month by any means, frankly I am not sure some times how we all made it here. We have had ups and downs...and our current state, just steady and even. Lakai is doing well, stable and growing but his lungs sadly are not showing very much improvement. Which is normal for a preemie so small and early but it is still frustrating. His oxygen is up to 50% today and he is not destating anymore.
I am hoping this is just a period of set back, that the doctor warned us about when we were in the "honeymoon" period when his lungs were still doing well.
I want to write more but I am utterly beat, I can hardly focus right now. I will try again tomorrow.
I hope everyone had a great weekend.
Dec 1 (all up to date now...) -
Today feels like a gray and bleak day, maybe it's just me or maybe it's just this weather. Gotta love Vancouver! Though I must admit the fog last night was very cool, you could only see the very tops of the buildings downtown poking over the thick heavy layer of fog. The Lions Gate bridge looked a little like pointy cupcakes complete with cherries on the top, poking out of thick fluffy icing like fog.
Lakai is off his HFOV vent and back on regular vent, which is so weird and yet great. Weird because yesterday they were talking like it was WEEKS away, not a mere 24 hours. Things really do change moment to moment in the NICU.
*Note if I miss letters or have bad spelling in this note forgive me, this old laptop of Kyle's is craptastic and the keyboard is shot. I could set up my PC but that just seems to make too much sense!
So lil' monkey Lakai (I have to stop calling him that, he is covered in lanugo (fine hair) but thats perfectly normal for preemies..even some term babies but he is not a monkey...=) ) is pretty much even still. Stable, growing...he is up over 1000 grams but it is a little water weight as well. His sodium is high, but thats again..normal.
How can I use the word normal so much when talking about Lakai and this situation? There is very little normal about it.
I watched him today getting his blood gases done, something that happens a couples times a day..and it's a poke with a needle to his heel. And I could barely watch, you could see him crying even though because of his vent tube you cannot hear him. And it just broke my heart and made me think about how very unnatural this all is. I have been keeping myself going by pretending that what is being done to him is sort of a mechanical version of a womb, but after seeing the heel poke...I was reminded how truly unlike a real womb it is. If he was still inside of me, he wouldn't be on morphine, hooking up to a vent and wouldn't have to suffer things like needles and blood transfusions.
Its impossible to not be angry with your body and yourself in some ways when this happens to you. You can hear and possible agree that "its not your fault" but it was me that was sick. And it was my body that caused all this to happen. Its very hard to not feel guilty, especially when your baby is suffering as a result of it all. I do not mean to sound sorry for myself, because I am sure there are women out there reading this who possibly couldn't have kids or maybe like myself suffered a miscarriage..you feel the same way I am sure. I'm sorry.
I should stray from this subject, I have a feeling it's one that I could dwell on which is not healthy or good for anyone. And it's pretty much a moot point now.
I had to laugh a little today, I bought Lakai burp cloths to be used as little blankets..because they were using face cloths before and they are too rough for my liking. But today he was wrapped up in one like a little burrito. For most babies it may cover their bums for him it's a complete head to toe blanket! Even though he is now 2lbs..he is still so small.
His blood work finally came back and the temperature he had a few nights ago, turned out to be nothing. No infection, thankfully!!
He still remains off his IV's and insulin. He is still getting supplements in his feeds though, but he needs the calories in order to grow big and strong!
Other than that, like the last few updates there is not too much to report!
No news..is good news.....
You have no idea how true those words have become this past month!
24 days till Christmas people....
PS The nurse today mentioned that we MAY be able to hold him as soon as tomorrow...I won't hold my breath though because we have heard that before, numerous times. But here's to hoping Xmas will come early for us and we will finally get to hold our son.
LuluBee
Mummy to Alex
- Joined
- May 30, 2008
- Messages
- 2,067
- Reaction score
- 0
Thank you so much for sharing all your updates with us honey, it was so wonderful reading about your little warrior and had me in tears several times, he is truly a magnificent little fighter and he must get that from his Mum becasue you are incredible to stay so strong during all this - way to go
I am sure he will continue to grow and get stronger by the day and I'll be praying your Christmas comes early and you get that precious snuggle with little Lakai.
You're all in our thoughts always
x_Rainbow_x
Well-Known Member
- Joined
- May 9, 2008
- Messages
- 11,130
- Reaction score
- 4
you are a very strong and inspirational woman. i wish you, your family and little lakai all the best, and i hope you can hold your little warrior very soon.
xxx
xxx
polo_princess
⥠Brookes Mummy â¥
- Joined
- Dec 22, 2007
- Messages
- 34,954
- Reaction score
- 0
Thanks for the update, had been wondering how you both were
pennysbored
Well-Known Member
- Joined
- Jul 13, 2008
- Messages
- 2,319
- Reaction score
- 0
I should be helping her keep updated. We are facebook friends, I always know what she is up to...she's a busy lady, and yeah, what a strong woman, huh?
Remind me! I still have baby brain!
Remind me! I still have baby brain!
kateqpr
Well-Known Member
- Joined
- Nov 14, 2007
- Messages
- 1,497
- Reaction score
- 0
So glad to hear he's still doing well and progressing. It must be so mentally and emotionally exhausting for you all, but try to look past Christmas and New Year to a point when he'll finally be home with you in his new room!! That time will come and you'll look back on this as a story to tell him when he's older!
Sending lots of love and positivity, from one grey glooming city (London) to another. It sooo doesn't help does it?!
X
Sending lots of love and positivity, from one grey glooming city (London) to another. It sooo doesn't help does it?!
X
nkbapbt
Double Preemie Momma
- Joined
- Dec 25, 2007
- Messages
- 3,751
- Reaction score
- 0
Thanks for the updates....sorry if I pestered a bit but I lost a little girl at 24wks and it was something close to my heart and I was desperate to know he was ok.
You were not pestering! Trust me. Its so nice to be worried about..it shows how much people care. Im so sorry about your little girl, I cannot imagine your pain. =(
Im so sorry.
nkbapbt
Double Preemie Momma
- Joined
- Dec 25, 2007
- Messages
- 3,751
- Reaction score
- 0
I promise I will try to do it more often now that I have my big ole' PC set up! But you rock for offering...if you see/notice me slip please feel free and SO thanked if you do update for us!
GUESS WHAT?
I held Lakai for almost THREE hours for the very first time today! OMG! It was utter heaven. HEAVEN!
I was super nervous at first, wow..he is so small..and I was scared of the tube and so on. But we did so well. He did destat twice, but it was because he needed to be suctioned. I could tell the second he started needing it done, besides hearing the difference in his "voice" (breathing and sounds) I could just tell.
But he was so calm he was on the lowest oxygen yet for most of the cuddle. Skin to skin...heaven!!
I had to utterly shut off my cry reflex...I wanted to so bad. But it kept coming like a blubbering type cry so I fought it back because I did not want to 1. soak him huge elephant sized tears 2. shake him around because I couldn't catch my breath 3...have a running nose!!
I am a little upset at my hubby though...he was taking pics, or trying too. And kept saying the camera was almost of out batteries but it wasn't, he just had it set wrong and the pics came out super dark and you cannot see anything. =(
I hate that! But I cant be too mad.
Kyle has been sick so he has to wait a few more days before he can hold him...so I cannot be too upset.
I feel like a groupie who just hugged their idol...I dont want to shower because it will wash off his smell, touch...feeling.
So cool! So happy!
nkbapbt
Double Preemie Momma
- Joined
- Dec 25, 2007
- Messages
- 3,751
- Reaction score
- 0
The top two are the newest photos and the bottom one is when he was 11 days old..and had a tube change.
https://photos-a.ak.fbcdn.net/photos-ak-snc1/v400/101/77/523391637/n523391637_1505624_8280.jpg
https://www.facebook.com/photos.php?id=523391637#/photo.php?pid=1486884&id=523391637
https://photos-a.ak.fbcdn.net/photos-ak-snc1/v376/101/77/523391637/n523391637_1462616_3181.jpg
https://photos-a.ak.fbcdn.net/photos-ak-snc1/v400/101/77/523391637/n523391637_1505624_8280.jpg
https://www.facebook.com/photos.php?id=523391637#/photo.php?pid=1486884&id=523391637
https://photos-a.ak.fbcdn.net/photos-ak-snc1/v376/101/77/523391637/n523391637_1462616_3181.jpg
Similar threads
Users who are viewing this thread
Members online
No members online now.
Latest posts
-
-
-
-
-
General chatter while we wait (and commentary on the "pull out method") (2 Viewers)- Latest: josephine3