Tuesday, November 25, 2008
Nov 24th...
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.
Stay tuned!
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.
Stay tuned!
Saturday..
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!
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!
Thursday, November 20, 2008
Update finally...sorry!
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.
Nic
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.
Nic
Monday, November 17, 2008
I am a butterfly...
Right now I wait, right now I grow,
But soon I will show.
Show the world what a beautiful transformation I have made,
Soon all the memories of my struggle will fade.
Right now I will be strong,
For the journey I am making is long.
But in time you will see,
The perfection which my mom calls “me”.
Right now I cannot fly,
But each time you see me, your heart is set on high.
In such a short time I will morph into an unstoppable force, a delicate being full of love and life,
In such a short time we will all but forget these days of strife.
My will is great; my strength is shining inside,
I face each new day, each new set back in stride.
Right now I am in my cocoon; right now I grow,
But soon I will show.
Show the world what a beautiful butterfly I have grown into,
And I will make it home to you.
I love you Lakai, love Mom.
But soon I will show.
Show the world what a beautiful transformation I have made,
Soon all the memories of my struggle will fade.
Right now I will be strong,
For the journey I am making is long.
But in time you will see,
The perfection which my mom calls “me”.
Right now I cannot fly,
But each time you see me, your heart is set on high.
In such a short time I will morph into an unstoppable force, a delicate being full of love and life,
In such a short time we will all but forget these days of strife.
My will is great; my strength is shining inside,
I face each new day, each new set back in stride.
Right now I am in my cocoon; right now I grow,
But soon I will show.
Show the world what a beautiful butterfly I have grown into,
And I will make it home to you.
I love you Lakai, love Mom.
Nov 15th & 16th Updates...
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 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
Saturday, November 15, 2008
Little Monkey Lakai
Nov 14 Update..
So I have come to the conclusion that there is no real information or stats on 24 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 24 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.
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 3 -
There is no updates right now, which is always good news. He is off the blue light therapy now and his colour looks awesome. He has not had his first feeding yet because his blood sugar was a bit high earlier, but it was back to normal by the end of afternoon. So hopefully soon there will be a first feeding.
Thanks Sam for offering to help with Huck, but they are both fine. And we have tons of support being offered for caring for them both. But of course I will let you know if we did need help.
I do have a feeling the strength I feel currently will be going down drastically once we have to leave the hospital with out Lakai. It will be so hard to not be just upstairs and able to just see him whenever we want. I know the next few months will be wonderful as he grows stronger and healthier each day, but it will be hard to not be right there.
Tonight when I saw him there was a soon-to-be-mom at his incubator looking at him..which at first scared me a little because I couldn't figure out why there was a strange nurse and woman looking at my son..but then the nurse informed me that the lady was about to give birth to a baby the same age as Lakai. And it made me calm down..new moms hey?
But they kept saying how beautiful he was..like I didn't already know. And how perfect he looked. Which he does.
The picture above? Does not do him justice, he looks far better in person. Once I can I will get his first actual photos scanned and posted on here for everyone to see.
He is flawless.
Nov 4-5th Updates...
In the last two days since that first update, Lakai has developed a PDA which is currently being treated with medication and being "watched" to see the outcome. But it is responding well to medication alone right now.
And today we learned that he has a Grade IV IHV on the lower side of the severity scale, but has one none the less. There is some bleeding found in the brain and its in front left side. The doctors of course gave us the worst case scenario, that he may have developmental issues...or physical issues like muscle control. But she did not feel like this would affect his survival and or there was any reason to discontinue support...not that we would (unless he faced a life of serve problems/pain).
Frankly for me, there is just no options. He is my son, I know he is strong and if he finds he cant always be strong, I am more than capable of being strong for both of us. The doctor can tell me all the stats she wants, he is not a stat or number....he will make up his own mind.
I don't know why but I am not scared that Lakai will not make it or will not come through this all the best possible person he can be. Whomever that may be.
I have been struggling a little with feeling like we are alone in this. I have tons of support from my husband, my family and friends. Even Lakai..bless his heart. He hung on to my finger today after we learned about his bleed, stronger than he ever has. It was like he was letting me know "Hey Mom, don't listen to anyone or anything but your heart. I'm going to be ok..".
I am listening to my heart... =)
Nov 6th Update....
We have had some positives today such as his PDA appears to be closed, but they did warn us that it could open again. He also does have a cut on his head that was looked at by a plastic surgeon but they think it will heal on its own.
He looks awesome. And frankly there isn't much change..but what there was, was all positive.
He was off his funky blue light today, which showed what nice colouring his skin has..nice a pink.
The doctor also told us even with the IVH he is doing so well in general. She said she was shocked that he had such a badly graded bleed because the rest of his health issues are minor.
I, on the other hand might be starting to run down a little..I feel very weak and tired. I don't think I am eating very well, which I know I have to fix. Between worrying and pumping, I feel pretty much terrible!
But I will start trying to take better care of myself since I know I have to be strong for Lakai.
They also have upped his feeding of 1cc of breast milk every four hours..to every two!
The doctor did say that even though he does have a Grade IV bleed its not on the serious side and that means its very doubtful he would be strongly affected by it. He could face learning disabilities or possible muscle control issues, but those are what can happen with there being also brain damage/injury.
She said we will have a better idea of what could be in 2-6 weeks. She also said that babys brains do amazing things and the outcome is really not something you can predict.
They can give us an "idea" but Lakai will pretty much decide the rest.
I don't know what to really make of it all beyond the fact that any baby can or could have these issues..
I cannot wait to hold him! Its honestly the toughest thing in the world. I can't wait to start kangaroo care.
Also our favorite nurse who just started at the hospital is actually able to do primary care, so thats a huge plus for us because we really like her and feel comfortable with her.
I don't have much else to update you guys with right now. Except Lakai peed all over the doctor and his incubator today as well....there is no mistaking he is all boy!
Nov 7 -
I don't have much to update health wise regarding Lakai..he is still doing so well. And despite being so small, its amazing to us that there are just so many other babies (some premature and some full term) who are so much sicker than he is. Its hard to not feel blessed.
I did get some awesome news that any day now, I should be able to HOLD HIM! I cannot wait. I hope I can keep myself together.
I well up just thinking about it!
Anyways..here are some updated pictures. I know its tough to see any baby or anyone full of wires and tubes, I had such a hard time before him looking at preemies. But trust me he is doing awesome and is strong!
Nov 8 -
Well today there is no huge changes, he is up to 4cc's of breast milk though which is good because he has lost SO much weight. Over 100 grams. =( But that is very common for preemies and he should start gaining soon. I cannot wait, because he is small enough!!
He still has blood sugar issues caused mostly from the fact they are trying to up his IV fluids and its just too much for his system.
His lines in his cord are still in because he is getting insulin so we are unable to hold him until those come out and he is taken off the ventilator and put onto a breathing machine called a CPAC.
I bought some blankets for him tonight so he can start having his own linens at the hospital and we can bring them home to wash..more something for me to do. Plus we can bring them home for the dogs smell and get use too. I also plan to tuck them in my shirt to rub some of my scent off on them....only after I shower first though...no germs!
I guess no news, is good news...
I wish it was February!
Nov 9 -
So today was full of ups and downs, as life in the NICU seems to be every day...
Lakai has put on 100 grams of weight thankfully. And was taken off his insulin for his high blood sugar levels, for now. His IV fluids are up to where the doctor wanted them to be, so that is also good and could mean he will not need insulin again.
He is now getting between 4 to 5 cc's of breast milk every two hours, the goal is to get him up to 9cc's every two hours. Well the goal in my mind is to get him breast feeding, but that's probably months and months away.
We also found his heart issues (PDA) is open and closing, so tomorrow they are going to do a repeat heart echo (ultrasound) and if it is open, then they will be performing surgery to clamp and close the PDA. I know the doctor has told us its a simple surgery that they do every day and that they do it about once a day on babies. But not my baby. And its a bit scary to think he will forever have a metal clamp in his heart.
He is also having another head ultrasound tomorrow to see where his bleeding is at, the doctor pushed it forward for us because Tuesday is a holiday. So we will see where we stand with the IHV bleed.
So today was a good and bad day.
And tomorrow is a very busy and important day.
I just wanted to take a second to thank my mom and dad, who undoubtly have been our biggest support system through out this. They have been driving us back and forth to the hospital whenever we want. Getting food into us. To even getting us boxes for our up coming move just next weekend.
Thank you so much Mom and Dad!
Also thank you very much to Ruth, the necklace was beautiful and I will wear it close to my heart. And the scrapbook is awesome, we cannot wait to fill full of baby pictures of lovely Lakai.
And last but never least thank you to everyone who has shown their support and love through out this!
Nov 10 & 11th -
This update was in my comments for the Nov 9th update..but just in case...Yesterday was suppose to be a busy day..but instead it was more hurry up and wait. Which is ok..I guess. But I won't lie it gets frustrating. Lakai is getting his surgery but it looks like it will be tomorrow. I have read ALL about it and now feel some what "comfortable" with it happening. Though I will never get use to the idea my baby is being operated on.
He has gained a little more weight today which is good.
He also had a second blood transfusion today which went well. But he also had a "brady" while we were at the hospital but I assume that will have something to do with his PDA.
I have to laugh a little because I found another quirk he and I share..beyond having ticklish feet..Lakai also really dislikes being on his left side. Which I cannot stand either.
Kyle learned how to clean his mouth and moisturize his lips today, which promptly made him start to suck and stick out his tongue.
I cannot wait till he gains some more weight. And gets the lines out of his umbilical cord (well stump now) so I can hold him. Its such an emotional seesaw when one nurse tells you one thing and another tells you another.
Even the doctors do it. I understand why..but it can be frustrating none the less. I totally appreicate the job they are doing, thats for sure!
Nov 11th Update.........
Today was a hard day, for everyone..especially for Lakai. He had his PDA surgery today which went very well. Thankfully! Thank you to Dr. Campbell who performed the surgery. And our nurse Jenny who is awesome and very good about making sure we not only have updates but we know exactly what is going on. I think we are going to ask her to be another one of our primary nurses. She's very good at her job, very careful and caring with Lakai, calling him "our" baby.
Lakai's surgery was about an hour tops, if that. Though I won't lie it felt as if the world stood still once the nurse said "this is where we say goodbye to the parents" just outside the surgery room doors.
Before the surgery Lakai was sucking away on his hand, which I confess I put to his mouth for him a couple of times. He seems to find a lot of comfort in doing it, though later in life I might regret that choice; but for now, whatever he needs to find comfort in ok with me.
He was very active before the surgery which was nice to see, because afterward he was so sedated that it made me pain a lot inside seeing him so still.
His blood sugar is back up again, but Jenny attributed that to the fact they had to stop feedings before the surgery and increased his IV fluids instead. So he was put back on insulin for now. He should start feeding again within a day or two, if not sooner. The way he eats already, it should be sooner. From what I have researched about preemies, 4cc's of breast milk for a 10 day old preemie is quiet a lot.
Both sides of his family love food..so it makes sense!
It was so hard to leave him tonight, mostly because he was not awake from the sedation yet and I wanted to see him more awake before we left. I am not sure what I am going to do when it comes time for me to return to work, I wish I didn't have too. But the fact we are about to sign the papers on our first apartment tomorrow, I have to go back because it wasn't planned for me to be off this soon and I cannot just dump the mortgage payments all on Kyle.
I am sure we will make something work. I am hoping once I can start holding him and later on breast feeding him...I will be able to be off work. Because once I can do one or both of those, it's going to take a tow truck or gale force winds to sweep through the NICU before I will leave. I am not about to miss my bonding experiences with him. That's for sure!
So other than that, that is our update for today.
Thank you everyone for the well wishes and positive thoughts regarding his big surgery today. It worked!
Keep it up please!!
Love Nic, Kyle & Lakai
Jaeden and Huckleberry too!
xoxox
There is no updates right now, which is always good news. He is off the blue light therapy now and his colour looks awesome. He has not had his first feeding yet because his blood sugar was a bit high earlier, but it was back to normal by the end of afternoon. So hopefully soon there will be a first feeding.
Thanks Sam for offering to help with Huck, but they are both fine. And we have tons of support being offered for caring for them both. But of course I will let you know if we did need help.
I do have a feeling the strength I feel currently will be going down drastically once we have to leave the hospital with out Lakai. It will be so hard to not be just upstairs and able to just see him whenever we want. I know the next few months will be wonderful as he grows stronger and healthier each day, but it will be hard to not be right there.
Tonight when I saw him there was a soon-to-be-mom at his incubator looking at him..which at first scared me a little because I couldn't figure out why there was a strange nurse and woman looking at my son..but then the nurse informed me that the lady was about to give birth to a baby the same age as Lakai. And it made me calm down..new moms hey?
But they kept saying how beautiful he was..like I didn't already know. And how perfect he looked. Which he does.
The picture above? Does not do him justice, he looks far better in person. Once I can I will get his first actual photos scanned and posted on here for everyone to see.
He is flawless.
Nov 4-5th Updates...
In the last two days since that first update, Lakai has developed a PDA which is currently being treated with medication and being "watched" to see the outcome. But it is responding well to medication alone right now.
And today we learned that he has a Grade IV IHV on the lower side of the severity scale, but has one none the less. There is some bleeding found in the brain and its in front left side. The doctors of course gave us the worst case scenario, that he may have developmental issues...or physical issues like muscle control. But she did not feel like this would affect his survival and or there was any reason to discontinue support...not that we would (unless he faced a life of serve problems/pain).
Frankly for me, there is just no options. He is my son, I know he is strong and if he finds he cant always be strong, I am more than capable of being strong for both of us. The doctor can tell me all the stats she wants, he is not a stat or number....he will make up his own mind.
I don't know why but I am not scared that Lakai will not make it or will not come through this all the best possible person he can be. Whomever that may be.
I have been struggling a little with feeling like we are alone in this. I have tons of support from my husband, my family and friends. Even Lakai..bless his heart. He hung on to my finger today after we learned about his bleed, stronger than he ever has. It was like he was letting me know "Hey Mom, don't listen to anyone or anything but your heart. I'm going to be ok..".
I am listening to my heart... =)
Nov 6th Update....
We have had some positives today such as his PDA appears to be closed, but they did warn us that it could open again. He also does have a cut on his head that was looked at by a plastic surgeon but they think it will heal on its own.
He looks awesome. And frankly there isn't much change..but what there was, was all positive.
He was off his funky blue light today, which showed what nice colouring his skin has..nice a pink.
The doctor also told us even with the IVH he is doing so well in general. She said she was shocked that he had such a badly graded bleed because the rest of his health issues are minor.
I, on the other hand might be starting to run down a little..I feel very weak and tired. I don't think I am eating very well, which I know I have to fix. Between worrying and pumping, I feel pretty much terrible!
But I will start trying to take better care of myself since I know I have to be strong for Lakai.
They also have upped his feeding of 1cc of breast milk every four hours..to every two!
The doctor did say that even though he does have a Grade IV bleed its not on the serious side and that means its very doubtful he would be strongly affected by it. He could face learning disabilities or possible muscle control issues, but those are what can happen with there being also brain damage/injury.
She said we will have a better idea of what could be in 2-6 weeks. She also said that babys brains do amazing things and the outcome is really not something you can predict.
They can give us an "idea" but Lakai will pretty much decide the rest.
I don't know what to really make of it all beyond the fact that any baby can or could have these issues..
I cannot wait to hold him! Its honestly the toughest thing in the world. I can't wait to start kangaroo care.
Also our favorite nurse who just started at the hospital is actually able to do primary care, so thats a huge plus for us because we really like her and feel comfortable with her.
I don't have much else to update you guys with right now. Except Lakai peed all over the doctor and his incubator today as well....there is no mistaking he is all boy!
Nov 7 -
I don't have much to update health wise regarding Lakai..he is still doing so well. And despite being so small, its amazing to us that there are just so many other babies (some premature and some full term) who are so much sicker than he is. Its hard to not feel blessed.
I did get some awesome news that any day now, I should be able to HOLD HIM! I cannot wait. I hope I can keep myself together.
I well up just thinking about it!
Anyways..here are some updated pictures. I know its tough to see any baby or anyone full of wires and tubes, I had such a hard time before him looking at preemies. But trust me he is doing awesome and is strong!
Nov 8 -
Well today there is no huge changes, he is up to 4cc's of breast milk though which is good because he has lost SO much weight. Over 100 grams. =( But that is very common for preemies and he should start gaining soon. I cannot wait, because he is small enough!!
He still has blood sugar issues caused mostly from the fact they are trying to up his IV fluids and its just too much for his system.
His lines in his cord are still in because he is getting insulin so we are unable to hold him until those come out and he is taken off the ventilator and put onto a breathing machine called a CPAC.
I bought some blankets for him tonight so he can start having his own linens at the hospital and we can bring them home to wash..more something for me to do. Plus we can bring them home for the dogs smell and get use too. I also plan to tuck them in my shirt to rub some of my scent off on them....only after I shower first though...no germs!
I guess no news, is good news...
I wish it was February!
Nov 9 -
So today was full of ups and downs, as life in the NICU seems to be every day...
Lakai has put on 100 grams of weight thankfully. And was taken off his insulin for his high blood sugar levels, for now. His IV fluids are up to where the doctor wanted them to be, so that is also good and could mean he will not need insulin again.
He is now getting between 4 to 5 cc's of breast milk every two hours, the goal is to get him up to 9cc's every two hours. Well the goal in my mind is to get him breast feeding, but that's probably months and months away.
We also found his heart issues (PDA) is open and closing, so tomorrow they are going to do a repeat heart echo (ultrasound) and if it is open, then they will be performing surgery to clamp and close the PDA. I know the doctor has told us its a simple surgery that they do every day and that they do it about once a day on babies. But not my baby. And its a bit scary to think he will forever have a metal clamp in his heart.
He is also having another head ultrasound tomorrow to see where his bleeding is at, the doctor pushed it forward for us because Tuesday is a holiday. So we will see where we stand with the IHV bleed.
So today was a good and bad day.
And tomorrow is a very busy and important day.
I just wanted to take a second to thank my mom and dad, who undoubtly have been our biggest support system through out this. They have been driving us back and forth to the hospital whenever we want. Getting food into us. To even getting us boxes for our up coming move just next weekend.
Thank you so much Mom and Dad!
Also thank you very much to Ruth, the necklace was beautiful and I will wear it close to my heart. And the scrapbook is awesome, we cannot wait to fill full of baby pictures of lovely Lakai.
And last but never least thank you to everyone who has shown their support and love through out this!
Nov 10 & 11th -
This update was in my comments for the Nov 9th update..but just in case...Yesterday was suppose to be a busy day..but instead it was more hurry up and wait. Which is ok..I guess. But I won't lie it gets frustrating. Lakai is getting his surgery but it looks like it will be tomorrow. I have read ALL about it and now feel some what "comfortable" with it happening. Though I will never get use to the idea my baby is being operated on.
He has gained a little more weight today which is good.
He also had a second blood transfusion today which went well. But he also had a "brady" while we were at the hospital but I assume that will have something to do with his PDA.
I have to laugh a little because I found another quirk he and I share..beyond having ticklish feet..Lakai also really dislikes being on his left side. Which I cannot stand either.
Kyle learned how to clean his mouth and moisturize his lips today, which promptly made him start to suck and stick out his tongue.
I cannot wait till he gains some more weight. And gets the lines out of his umbilical cord (well stump now) so I can hold him. Its such an emotional seesaw when one nurse tells you one thing and another tells you another.
Even the doctors do it. I understand why..but it can be frustrating none the less. I totally appreicate the job they are doing, thats for sure!
Nov 11th Update.........
Today was a hard day, for everyone..especially for Lakai. He had his PDA surgery today which went very well. Thankfully! Thank you to Dr. Campbell who performed the surgery. And our nurse Jenny who is awesome and very good about making sure we not only have updates but we know exactly what is going on. I think we are going to ask her to be another one of our primary nurses. She's very good at her job, very careful and caring with Lakai, calling him "our" baby.
Lakai's surgery was about an hour tops, if that. Though I won't lie it felt as if the world stood still once the nurse said "this is where we say goodbye to the parents" just outside the surgery room doors.
Before the surgery Lakai was sucking away on his hand, which I confess I put to his mouth for him a couple of times. He seems to find a lot of comfort in doing it, though later in life I might regret that choice; but for now, whatever he needs to find comfort in ok with me.
He was very active before the surgery which was nice to see, because afterward he was so sedated that it made me pain a lot inside seeing him so still.
His blood sugar is back up again, but Jenny attributed that to the fact they had to stop feedings before the surgery and increased his IV fluids instead. So he was put back on insulin for now. He should start feeding again within a day or two, if not sooner. The way he eats already, it should be sooner. From what I have researched about preemies, 4cc's of breast milk for a 10 day old preemie is quiet a lot.
Both sides of his family love food..so it makes sense!
It was so hard to leave him tonight, mostly because he was not awake from the sedation yet and I wanted to see him more awake before we left. I am not sure what I am going to do when it comes time for me to return to work, I wish I didn't have too. But the fact we are about to sign the papers on our first apartment tomorrow, I have to go back because it wasn't planned for me to be off this soon and I cannot just dump the mortgage payments all on Kyle.
I am sure we will make something work. I am hoping once I can start holding him and later on breast feeding him...I will be able to be off work. Because once I can do one or both of those, it's going to take a tow truck or gale force winds to sweep through the NICU before I will leave. I am not about to miss my bonding experiences with him. That's for sure!
So other than that, that is our update for today.
Thank you everyone for the well wishes and positive thoughts regarding his big surgery today. It worked!
Keep it up please!!
Love Nic, Kyle & Lakai
Jaeden and Huckleberry too!
xoxox
Wednesday, November 5, 2008
Lakai Hamilton Kraft
Well first of all I just want to introduce my son to the world! Lakai Hamilton Kraft was born at 1:50am on November 2, 2008 at the Children's Hospital in Vancouver. He is only 24 weeks and 3 days old..well now 4 days old! Or should I say officially he is a 3 days old!
He came into this world early for reasons that are still some what unknown, but the main thing is he is fighting every single minute, growing stronger and stronger.
He weighs 1.63lbs right now and is in great condition aside from some minor things, such as a small now healing cut on his head from the very short birthing process and a bruise on his nose from the same.
I will mention now he was a very easy delivery in most respects, except that they had to induce me which made the labor come on a little faster and stronger than I was prepared for! But it didn't take him very much time to make his way into this world!
Currently he is on a breathing tube and in an incubator but he is actually doing most of his own breathing which is amazing for a premie of his age. He was getting caffine to sitmulate his breathing, but they stopped today because he is doing so well. There is even talk already of taking out his breathing tube! But that might wait and that's fine considering it is helping him and I do not want them doing anything that will stress him out.
He is also sporting some very cool bandage sunglasses right now because he is under a blue light for jaundice, which is very normal in premies. As the doctor says its "basic house keeping".
He did recieve a blood tranfusion last night but that is also some what basic housekeeping for a premie since they have to take so much blood from testing and because he is not creating his own blood yet, that he become ememic.
It went perfectly though...of course!
The doctors also say he is and I quote "a dream to work with because he is so easy to care for and has really no health issues beyond being premature". He does have a little bit of a temper like his dad though!
I have to admit beyond the temper thing, right now he is most like myself. He is stubborn, head strong, willful, strong, tough and sets his own rules to how he plans things to go for himself! Did I just admit I am all those things?
Plus he has black hair like me and my nose...even my toes actually.
He will most likely have to remain here until his due date of Feb 18th, 2009. But I have a very strong good feeling he won't stay a day or second longer than he wants too. He just isn't interested in being the average premie, he wants to show everyone what he is made of.
He is most certainly a little fighter!
Oh, about his name...Lakai is a combo of NicoLA and KYle..if you have not already figured it out. And Hamilton is my mom's maiden name and since she has always been the most supportive Grandma to him even before he was born and more so after we could not think of a better way to honor that and her.
Thank you so much Mom for everything you have done and all the love and support you have given me, Kyle and Lakai!
Thank you also to Ruth for being there through the labor and helping me focus on what I needed to get done. I really don't know what I would have done without you because I was for sure flying blindly...having not yet gone to birthing classes...and or prenatal!
And there is truly no way I could not thank the nurses, Angela and Ahmen for helping us through everything. And Dr. Shand and everything other single doctor and nurse at Children Hospital. It would be impossible to name everyone...there are just so many wonderful caring people who have helped us. An especially deep heartful thank you to the nurses in the NICU, everytime we go into to see Lakai you update us and tell us how wonderful our little warrior is doing. We know everytime we walk out the door to return to the hospital room that we are leaving Lakai in the best hands possible. THANK YOU!
I have to say its funny how I feel about everything. I mean you just never know what your reaction would be in this type of situation maybe because you never see it happening to you...or there is just no way to judge without it actually happening. But I am not scared or even that worried. I know in my heart Lakai is a fighter and he is strong like his mom and dad! And he will be just fine and no one will ever tell him otherwise.
I will admit it can be emotionally trying when I see other moms on the ward where I am staying holding their babies when I cannot hold him. But that day will come sooner than later, sooner than anyone will expect too!
Love Nic, Kyle and our little warrior Lakai Hamilton Kraft!
He came into this world early for reasons that are still some what unknown, but the main thing is he is fighting every single minute, growing stronger and stronger.
He weighs 1.63lbs right now and is in great condition aside from some minor things, such as a small now healing cut on his head from the very short birthing process and a bruise on his nose from the same.
I will mention now he was a very easy delivery in most respects, except that they had to induce me which made the labor come on a little faster and stronger than I was prepared for! But it didn't take him very much time to make his way into this world!
Currently he is on a breathing tube and in an incubator but he is actually doing most of his own breathing which is amazing for a premie of his age. He was getting caffine to sitmulate his breathing, but they stopped today because he is doing so well. There is even talk already of taking out his breathing tube! But that might wait and that's fine considering it is helping him and I do not want them doing anything that will stress him out.
He is also sporting some very cool bandage sunglasses right now because he is under a blue light for jaundice, which is very normal in premies. As the doctor says its "basic house keeping".
He did recieve a blood tranfusion last night but that is also some what basic housekeeping for a premie since they have to take so much blood from testing and because he is not creating his own blood yet, that he become ememic.
It went perfectly though...of course!
The doctors also say he is and I quote "a dream to work with because he is so easy to care for and has really no health issues beyond being premature". He does have a little bit of a temper like his dad though!
I have to admit beyond the temper thing, right now he is most like myself. He is stubborn, head strong, willful, strong, tough and sets his own rules to how he plans things to go for himself! Did I just admit I am all those things?
Plus he has black hair like me and my nose...even my toes actually.
He will most likely have to remain here until his due date of Feb 18th, 2009. But I have a very strong good feeling he won't stay a day or second longer than he wants too. He just isn't interested in being the average premie, he wants to show everyone what he is made of.
He is most certainly a little fighter!
Oh, about his name...Lakai is a combo of NicoLA and KYle..if you have not already figured it out. And Hamilton is my mom's maiden name and since she has always been the most supportive Grandma to him even before he was born and more so after we could not think of a better way to honor that and her.
Thank you so much Mom for everything you have done and all the love and support you have given me, Kyle and Lakai!
Thank you also to Ruth for being there through the labor and helping me focus on what I needed to get done. I really don't know what I would have done without you because I was for sure flying blindly...having not yet gone to birthing classes...and or prenatal!
And there is truly no way I could not thank the nurses, Angela and Ahmen for helping us through everything. And Dr. Shand and everything other single doctor and nurse at Children Hospital. It would be impossible to name everyone...there are just so many wonderful caring people who have helped us. An especially deep heartful thank you to the nurses in the NICU, everytime we go into to see Lakai you update us and tell us how wonderful our little warrior is doing. We know everytime we walk out the door to return to the hospital room that we are leaving Lakai in the best hands possible. THANK YOU!
I have to say its funny how I feel about everything. I mean you just never know what your reaction would be in this type of situation maybe because you never see it happening to you...or there is just no way to judge without it actually happening. But I am not scared or even that worried. I know in my heart Lakai is a fighter and he is strong like his mom and dad! And he will be just fine and no one will ever tell him otherwise.
I will admit it can be emotionally trying when I see other moms on the ward where I am staying holding their babies when I cannot hold him. But that day will come sooner than later, sooner than anyone will expect too!
Love Nic, Kyle and our little warrior Lakai Hamilton Kraft!
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