Friday, August 26, 2011

Thursday, August 25, 2011

Welcome Home

Kai has been home since Monday afternoon and he has really been enjoying himself!
Got super cozy in his carseat and did great on the hour drive home with Henny and Gramma. 


He did end up coming home with the NG tube (feeding tube through his nose) but it was lose and we took it out later that night to see how he would do without it. At first he was doing just fine, then each feeding he kept taking less and less until he was averaging just under half a feeding each time. So yesterday when I took him to the Pediatricians for his first check up, we decided to put the tube back in, and of course he took his next feeding in full, like a champ, but that didn't mean I could take the tube back out...
Other than that he had a nice check up and we will go back again next week as well as other specialists appointments to follow.

He really loves to be held since he spent so much time lying in a crib. It's just amazing to have him home where he belongs and back with his family. It's weird sitting here on my couch holding him when just a few short months ago I was confined to the couch on bed rest with him totally miserable. And now I could sit here all day with him holding him and sharing my life with him again.

To say the least he's been a typical "newborn" since coming home. All he's been up to is sleeping, eating (a little), rocking in swing, and getting diapers changed. I actually went for a walk with him yesterday as well andI look forward to many more. 


Sunday, August 21, 2011

105 Days later...

After 15 grueling weeks, Kai Leo is FINALLY COMING HOME! Tomorrow! We couldn't be anymore more excited.
He has passed his hearing test and car seat test (90 minutes) yesterday and has even improved on his bottle feeding taking about 75% by bottle now at 66mL.
Kirra prepared herself last night by practicing infant CPR as well...



She did really well following instructions! She will be my big helper and a great big sister!

And of course, Kai's room is ready for him as well. I think my nesting is finally complete...
Adam built entire dresser!
(from IKEA of course)
Kirra's old moon next to the shelves to give him a little glow at night along with the 
sea turtle on the dresser that lights up stars on the ceiling from Gramma!

Personalized sail boat from Henny & Nano
Pirate's treasure chest hand painted by Eric Robinson (a.k.a Uncle Zipper)

Crib from best Aunt Jenny (Sam Jr.'s old crib)
Beautiful blue blanket made by Nancy Gordon

 I will try my best to keep the updates coming once he's home since he will only be having family members visiting for the first couple of weeks while his immune system adjusts.
Thanks everyone! Kai appreciates ALL your continuing love and support :)
Love,
Ash


Friday, August 19, 2011

Plans changed again

Yesterday we were given another change of plans and good news! Kai does not need surgery! The surgeons did not find an inguinal hernia (although still has umbilica hernia which does not need repai) he just has a slightly puffy pouch to say the least, which should go down over time.
With all his good overall health and absence of any type of episode,they want to try to get him home by this Monday! Yay! We're so excited!

They have stopped his respiratory treatments as they were just a 3-day trial and so all he'll be coming home with is a feeding tube,multivitamin,iron, and Prilosec for reflux!

He's getting circumcised right now and he's been doing really well today.
Do we're checking stuff off his list of things to be done for discharge and we're hoping for everything to go smoothly.

Thursday, August 18, 2011

Kai had another eye exam this morning and everything still looks good according to the doctor!

Surgeons still never came last night to check out the hernia, but nurses and Dr.Sunshine seem to think there is no hernia!

I'll be visiting him later today with more updates!

Wednesday, August 17, 2011

Not quite there yet

Change of plans...looks like the hernia found in Kai's groin is no longer there or at least never was there. The surgeons were suppose to come down and look at him today, but still have not and they will decide what's really going on with that area. The doctor yesterday said that there may be a hole in the muscle tissue, but his intestines are not coming through so might not require surgery at all! We'll keep our fingers crossed and prayers flowing.

He also had his heart ultrasound today and his PDA is not closed all the way still. We'll know more on this tomorrow, but from what I remember it can stay that way if it's not affecting his health and will not need surgery either.

Since he's been back on his respiratory treatments (Xopenex & Polmicort) he seems awake and alert again as we he seemed very fatigued before. They will continue the treatment for a couple more days and see how he does, but other than that his chest xray from yesterday looks good!

He's unfortunately regressed a little with the bottle feeds and breast feeding and we're thinking maybe the respiratory treatments will help him get back on track. He was taking about 80% through bottle and the rest gavage and now he's at about 20-30% bottle. He just seems to get really tired and non interested after a little while, but in my opinion the good news is that he actually takes a bottle and can suck, swallow, and breath all in one. Some preemies have difficulties with just that so I think he can make it through this phase and push on to full bottle feeds before he comes home!

Speaking of coming home, like I said before, we were looking at this Friday or Sunday as our discharge date, but it seems with all that's up in the air, they seem to think his discharge date will be more like 2-4 weeks from now (42-44 weeks gestation) simply because he was such an early preemie and was so sick before. They'd really like to see him come home worry free and no feeding tube! Us too! :)

So looks like I may head back over to Ronald McDonald House so I can stay with Kai throughout the entire day and actually help him with feeds and give him really good TLC!

That is all for now, but I'll keep the updates for his health and discharge date.


More Videos

40 weeks
7lb. 5oz.
video
Great motor skills!!!



video
Finally starting to fall asleep 

Sunday, August 14, 2011

Due Date...

Today is Kai's official due date, August 14th. The date that has been ingrained in my head since I found out I was pregnant with Kai. He's been in the hospital for 98 days and has exceeded everyone's expectations since Day 1. Since finding out about his brain bleed the first week of life (Friday the 13th is actually when we found out) Kai has been nothing but a "normal" newborn baby in my eyes.

He's had some road blocks along the way with breathing issues and eye surgery of course, but today he acts like he's fresh from the womb and everything else was all a dream. He's had the best help along the way and because of that he will continue to thrive and ultimately be "just fine". I tell him every time I see him, "You're okay huh, you're just fine, Bubba".

From this point on Kai's due date is considered a type of birth date in a way called his "adjusted age". So he's actually 3 months old now doctors will still use his adjusted age to compare with developmental milestones. So today will be day 1, it's weird, but I get it and one day it will all be a wash and he'll be just 3 or just 4, no extra age.

We are still waiting to hear back from the surgeons when they can schedule his surgery for his hernia. They've already looked at him and are hoping to get it done this Wednesday or Thursday and if all goes well with recovery come home Friday! We're really excited about his homecoming and his room is almost all ready to go.

We also had a nice little "care conference" with the Attending doctor the other day to recap all of Kai's past and present issues. He told us that the MRI Kai finally had showed exactly what he had expected, that there was just small bits of Iron left over from the bleed on both sides of the brain as it was just a bleed and not an active bleed and did not develop hydrocephalus from it. The left ventricle looked slightly bigger than the right and had shown a small amount of tissue to be affected. So he said that the part of tissue that was affected was the area that controls lower limbs so he may develop tightness in his right leg and we just have to watch his muscle tone with the development therapist and physical therapist. Other than that, we still have no way of knowing if Kai will have any other difficulties such as CP (Cerebral Palsy) or anything else due to the bleed.

The doctor talked about his lungs and that he did not need another chest xray and believes they are doing fine so they stopped the inhaled treatment he was getting and said all he needs to do is grow and get taller and obviously should have no problem doing that! The notes in the computer from the eye doctor say that everything is looking good and he is happy with the results. I still have yet to talk directly to the eye doctor as he is extremely busy and I should be hearing from him soon. He has been desat free, but has a few Bradycardia episodes here and there and I'm not sure what that means, if he'll need to come home with an Apnea monitor or not.

All-in-all, Kai has been doing really well and seems to be a happy baby, really! Next time I'm with him all day I will count how many times he smiles and post it! It's impressively a lot!

We also had a quick family visit this morning and of course Kirra insisted on holding him again. She actually does really well and is very sweet with him. He weighed in at 7lbs too! Getting nice and heavy for his big sister.


Kai 
14 weeks old



Saturday, August 13, 2011

Thursday, August 11, 2011

Day 95

Gestational Age:39 weeks
Birth Age: 13 weeks
Weight: 6lbs. 13oz.

Kai is going strong in the IICN. He's about ready to come home soon especially since his due date is right around the corner (Sunday). However he has a hernia on his groin that is very common in preemies that requires surgery. While he's undergoing that surgery they might fix his umbilica hernia as well.
With all that, he still needs to be circumsized so all of this will push his discharge date out to possibly the 21st.

He's still taking about half of his feeds from bottle and I'm going to try to be at the hospital more often to nurse since he's been doing well with that also.
Currently he gets 60mL's of milk and will either take about 30mL's from the bottle consecutively or take the whole 60 every other feed. So if he can't take all of his feeds before he is discharged he might have to go home with feeding tube & we'll have to learn how to do gavage feedings.

His development therapist has been checking in on him recently as well and likes what she sees. His muscles are not too tight and has good range of motion and she also showed me how to do tummy time with him to help strengthen his head and neck. They'll keep assessing him before he leaves and he'll also see a specialist once he's home.


Thursday, August 4, 2011

Day 88




Kai had another great day! Kirra, Alli, and I showed up just before his feeding time and it was perfect timing for Kirra to hold him. It was so sweet and she was such a good girl and wonderful big sister! They lasted a good amount of time with each other too!

The nurse showed me how to give him a bath and he seemed to really enjoy it, he was pretty dirty believe it or not. We were suppose to practice the bottle at his feeding today, but instead we tried nursing for the first time and he did so good! He did a lot better than I expected! The best part was he was sating 100% the entire time and had no extra oxygen. In fact, they took him off the nasal canula shortly after! He may or may not need to use it again, but for now he's really been progressing and without any desats so they decided to free up his face of one extra tube! All he has now is a feeding tube through his nose.

Other than today going well, he is offered the bottle at every feeding if he is interested (every 3 hours). He's been doing really well with that and starting to get the hang of it, all he needs is practice. He doesn't get much milk but it's the training that counts.

The eye doctor has been checking in on him and says his eyes are looking good. I have only heard that report from the nurse and have yet a chance to talk directly to the doctor about what that really means and how many more exams he'll need before he can come home.

All in all, he is progressing and seems to be getting healthier, and that's all that is important right now!

Thank you all for the support and prayers once again!

video

Tuesday, August 2, 2011

Out with the old INN with the new

Kai has been transferred out of the NICU and into the IICN a.k.a. the "Inn" since last night! Its so quiet and relaxing in here,finally!
He has been really stable and making good progress with gaining weight and tolerating all his feeds.
The monitors have been quiet, maybe 1 desat per shift. Still has reflux issues and a herniated belly button, but hopefully he'll grow out of both.
The doctor ordered the MRI today and also thinks he shows normal baby behavior which is very promising!
I'll keep his status updated but I was just really excited that we're one step closer-he's 38 weeks gestation today!
Due Date: August 14th