off the vent!

here's Kaia this morning when I woke up (nurse Jackie put the cute hat that auntie Jen bought on her head)


And here's Kaia now! She's catchin' flies.

Oh, she's a happy girl with no tube down her throat! We had a giggling session. She smiled and smiled!




What a great day! I mean, she woke up.....wait....I woke up this morning to Kaia still sleeping. That NEVER happens. Kaia doesn't sleep much. But she was zonked, and she slept almost the whole day! I think she was saving the energy so she could successfully come off of the vent. Let me say it again, she NEVER sleeps and she slept. It allowed me time to go get a shower, then the tests started. We had a nice break when Kate came to visit. She brought a bag of goodies from whole foods, and I think that was the healthiest food I've/we've eaten in a month. Thank you Kate! What a great surprise. The food was delicious! We got to visit for about 10 minutes or so before the next test started. Kaia had a few exams/ultrasounds/cameras in her lungs...to see if her lung function would support her. She passed all of them, so out came the tube. She's now 6 hours extubated and is still doing well. She's got a lot of secretions that need to be suctioned until she learns to cough. But for a girl who's been intubated most of her life, she's doing really well. Let's all hope and pray that her feeds stay in her belly and don't get thrown up and seep into her lungs again. she threw up last night when her tube was still in, so we now have her on zantac for her reflux issues, so hopefully she will keep it down. Unfortunately, we can't explore the reasons for her reflux because there's only one formula that she can have right now due to her chyle issue. So, we can't change her diet and eliminate dairy to cure it or anything. Once this chyle stops, she can go back to breastmilk. We were told 3 months today. I believe she will have the chest tube in for most of that time too, so she can drain that fluid, since it almost drowned her during her last extubation.

So, all in all, it's been a great day! What a great change of emotion. I went from crying because I thought we would lose her, to crying because I was so excited that she seems to have improved. I don't think we'll sleep much tonight, as we'll be sleeping with no earplugs so we can hear her cough or choke or whatever on her feeds, if she does spit them up. Getting through tonight will be nerve wracking, but we definitely both felt that today was the right day to extubate her, and I have faith that she will be okay. She told me to tell you all that she loves you and owes all of her success to God and you all!

xoxo!

family visit

Sunday was a special day for Kaia. Her Great Grandmother and Great Aunt Jodi came out to visit her, along with Pap and Gram. Kaia was still on the ventilator, which wasn't ideal for meeting a Great Grandma who's been wanting to get her hands on a great grand baby for a long long time, but at least they got to meet! Our little girl was a bit swollen still and didn't look herself, but everyone still said she was beautiful. We had a nice visit. Aunt Jodi and I finished off almost a whole big bag of popcorn (thanks for all the snacks Jackie!). Yum. Then we went to little italy (a hop away from the hospital) for a nice lunch. It was really nice having visitors! Next time, Kaia will be able to be held. Horray! Anyway, I had a couple of pictures from the day and wanted to post them. Here they are! Look at Kaia stare at her Great Aunt Jodi. So cute.

Kaia and Gram

Kaia with Great Gram

4 generations of Parker

sorry for the absence

It's been a rough rough rough weekend in the PICU here at rainbow. Three kids died, that I know of. There has been a little baby in the room next to us that was on ECMO (that's the machine kaia was on that pumped her blood for her) for a week now. He had a procedure done on him today. I saw a wooden cart come flying down the hallway and park in front of his door. When the nurses in our room saw the cart, they ran next door. All i could hear was the sound of flatlining alarms going off and mass amounts of syringes being filled with medicines...probably adrenaline. Next thing I saw were doctors leaving and machines being taken out of the room. Within 20 minutes, the room was empty. I sat down to breastpump, and I heard shrieking. I instantly knew it was the mother. I jolted up from pumping and found eric and asked who that was. He said it was some kid crying but i knew that sound could only come from a mother who had just lost her child. I was right. I said to our nurse "it sounds like a torture chamber in here today". And she said "believe it or not, that came from outside the unit." And I said "it was the mother, wasn't it." She shook her head yes. I heard her screaming, loud and clear, like it was in our room but she was way down the hall and in the waiting area outside the picu doors. I feel horrible. I feel like vomiting. I can't eat. I can't go outside. I can't leave Kaia.

Yesterday, I saw the family that was with their child a few doors down, crying out in the waiting area. I had been talking with that mother over the last several days. When i saw them out there crying, I knew they lost their child too. Today, that room is empty.

The third child was probably 15 years old. She'd been on ecmo since we've been here. Her room is empty too. The empty rooms are so eerie. I've not thought about the kids who have passed while in here until this weekend, as we were around three that had passed. It's strange to think their little souls drifted off with us next door. It's a horrible feeling that is so strange and surreal. I can't explain it, nor do i want to. I just know that I don't want to be that mother that I heard today. That would be me, if anything happens to Kaia.

So, the breathing tube never came out. We are dumbfounded. Apprehension has been a big issue of mine while in here, and I've learned to trust my gut instinct at this point. Every time I've felt some certain way when it comes to Kaia, I've been right. That first time she came off the tube, she was 3 days extubated and it was father's day.....eric and i had just started feeling comfortable going home thinking we were on the easy end of things. But that sunday, I had an anxiety attack of sorts about going home. I had not cried much in a week, but i was bawling and couldn't leave Kaia. I eventually told myself I was just being paranoid and left. 3 hours later, kaia crashed due to an arrest and had to be resuscitated. The second time they took her off the tube, I knew it wasn't the right time because something else was going on with her that nobody was paying attention to. Eric and I saw it, and we spoke up, but nobody listened. The tube came out and went back in a half hour later. We almost lost her again. The tube was supposed to come out over the weekend, but we said no. It was pushed to today and today she has had fits of heavy breathing of 80-120 breaths a minute for hours and hours. FINALLY, someone else was in here too to see it. We had been seeing this for over a week and nobody listened. Today, they listened. They now see that she does have a third (and hopefully final) issue going on with her that needs discovered before she can progress to getting out of here. Her heart looks fine at this point. That leaking of the chyle fluid from her thorasic duct has lessened (which made them want to take her off the tube again because that fluid was "the issue last extubation"). But there is a third thing now. I won't go into what that might be because there are so many options they gave us. But, we will find out. I know it.

Let me back up on this chyle fluid. I mentioned in my last post that there is a duct that they said they can nick during surgery and it will leak fluid. Apparently, this has happened to Kaia. It is not super common, but it isn't super unusual either. Last time they took the tube out of her throat, she grunted the whole time and had a really hard time breathing on her own. They re-intubated her and then x-rayed her and found the chyle fluid all around her lungs. Now, she gets x-rays every day. She always has had fluid, but they drained 80 mls out at that point and the tube is still draining (now at a slower pace), for a total of over 250 MLs so far. I can't go into the chyle issue too much, as I haven't had much time to research it. But, the thorasic duct can be damaged in surgery. In infants, it's so small that you can't even tell where it is, thus it being easy to damage during surgery. It can be damaged due to moving tissue around during surgery or nicking it with a surgical tool or even just the trauma from surgery itself. Once damaged, it cannot heal unless you remove all fats from the diet. So, kaia is on a strict diet (no breastmilk for now) of no undigested fats. all the fats in her formula are pre-digested. Don't ask me how...i really don't want to know. But, it's really slowed the leak. The hope is that the leak will heal on its own. Most of the time, it does. Some of the time, this diet has to be followed forever and can be fatal. Let's hope that she (for once) falls in the "most of the time" category.

That's all I have for today. We are scheduled round the clock, day in and day out (an nights too) for procedures, tests, doctors talks, x-rays, etc daily. I'm really sorry for all I haven't gotten back to. We barely find time to eat with all that we have going on with her on a day to day basis. We rarely shower, which is sick, but it takes a back seat to kaia's needs. I really hope and pray it slows down. We usually get to sleep from midnight until 4am, when her day starts with the daily x-ray and then her normal tests and procedures that she gets each morning. I'd say we average 4 hours of sleep per night. The rest of the day is spent pumping, trying to find time to eat, talking to docs and updating this blog. Day in and day out...that is literally all we do. I can't believe June is almost over and we still haven't done a single thing outside. I miss everyone and everything! I miss our home. I miss the lake. I miss our friends. I miss cooking (and eating healthy food!). I miss my cats (sometimes). But, most of all, I miss holding our daughter and hope that one day, we can get her to see the outside world.

it just gets worse

The breathing tube came out yesterday for about a half hour before it went back in. It was hard to get it back in, as her throat has had it shoved in there three times so far. It took three more tries to get it in this time. Now I see blood in the tube. She was grunting the whole time it was out, a sign of distress in children. She turned pale white and was breathing so hard. That made them put it back in. An x-ray showed a bunch of fluid surrounding her lungs. We are not sure if the fluid game after they took the tube out or before. But it squished her lungs and made it hard to breath. They put an emergency chest tube in (put a hole in the side of her to drain the fluid...i'd talked about the possibility of this in a previous post). The chest tube has drained over 100 ml of fluid so far and it keeps coming. Her body is producing it and leaking it around her lung walls.

There are 3 different things that can cause this to happen. I forget the first two because they don't think those are it. The third think is a duct that they can nick during surgery that cannot be fixed. This is the worst case scenario.

I didn't post last night because I couldn't see straight. I've never cried so hard in my life. I wanted to curl up and die on the floor. I couldn't stand or sit or walk or breath. This nightmare is never ending. I don't want to, nor know how to do this anymore. I have nothing left. Every day is one step forward and three steps back. It looks like she will not make it through. They keep telling me to not think that yet. I'm not sure how to think otherwise. We need a miracle now. That is what can save her. I do know that I don't know how to live past this.

nerves nerves nerves

are getting to me! i'm so nervous for her tube to come out. It's supposed to happen today. Little Kaia has so many issues, that nobody is sure if the tube is helping her or hurting her. She has congestive heart failure, and nobody knows what's causing it. Her lung keeps opening up and then recollapsing. It's collapsed again...not totally, but it is somewhat. They might have to move the second surgery up a bit to compensate for a narrowing of a vessel that is not allowing blood to flow freely. Her heart is working so fast and hard that it sometimes just slows way down and her breathing goes way up. These things could fix themselves once off the breathing tube...or they could get worse. As one doc said it today "this is where the 'art' part of medicine takes over for 'science'....because we just don't have difinitive answers". GREAT! Thanks for that pick me up, doc. I've decided to not worry about it. She is in God's hands, and there is nothing I can do to change her fate. All I can do is love her to pieces and soak in as much Kaia as I can get each day. It's kind of hard when she sleeps all day and is up all night when mommy sleeps. But...

Anyway, I really came on here (not to give an update for the day yet...we are not ready) to thank a very special couple of everyday angels. Eric ran home to feed cats and water plants and pick up mail. I was pleasantly surprised at a package. I mean, who doesn't love packages? I opened it to find a people mag (my fave!) a national enquirer (eric's new fave!) and a book of crossword puzzles (my new pastime as I'm pumping every 2.5 hours). Included in that package was a beautiful card with a generous donation that we will put in our newfound "kaia fund" (a little fund of money we're setting aside for her ever growing mound of billions and billions of hospital bills). It really is unfortunate to be dealing with this tragedy, only to be faced with endless bills coming in every day. But to see someone support us like that made me break down and cry. I was so touched. I'm not sure if those peeps want called out or not, but too bad! So, Shannon, Jenn, Becky, Brian & Kim....your thoughtfulness was a huge light in our day yesterday. I don't know how to thank you properly, other than to publicly thank you and say that I hope you get repaid tenfold. I believe in karma, and you gots some good stuff coming your way! Much love to all of you. We are blessed!

I'll be back with a tube update later....if I'm awake. We have barely slept the last few days (okay....month....but the last few days have been especially bad). So, if I'm sleeping then i'll do it asap tomorrow am!

sleepy gal!

Look at this kid.


She's been like this all day. Sleeping away! Finally. She was awake for like 24 hours straight. Eric was up with her all night until about 6:30 am, when his body got too tired to watch over her anymore. She was up the entire time.

Let me just tell you a little something about miss Kaia. We took our nightly walk outside for about an hour (something i like to do to keep me sane through this) and came back to our little girl watching "madagascar".
Look at this:



I clearly disapprove. But....


Now, she wasn't just watching the movie, she was TOTALLY ENTHRALLED with it. Like.....staring intently and watching every move the animals made. the nurse put it on for her (there goes my "no tv" rule, but rules go out the window when necessary, as moms know) and she LOVED it. I'm sure she's not a tv addict or anything, but she was definitely entertained. How entertained? Well, I actually thought that she might have brain damage because i couldn't get her to look away. All i could think was "is this autism?". But, she just liked it. I put my head in front of the tv so she couldn't see and she immediately started crying. But, we turned the tv so she couldn't see it and got her attention on us again. She was a super happy child last night. It was so good to see! It made me feel great and more positive.

Now for more good news: her lung is open again. I am not getting my hopes up this time, as it's happened before. But, she seems much happier which tells me she's feeling better inside, which tells me that things inside are getting better. And here's more good news, they think she's coming off the breathing tube again tomorrow. I'm very excited for this and very scared at the same time. I mean, i hate her on it. BUT, it does protect her airway and keeps her from aspirating again and potentially having an arrest again. She can't live on it forever though, so we just have to have faith in her to be able to do this and not relapse! Please put the energy and focus on this over the next few days! We feel it over here! I promise you! And I can't wait to introduce everyone to the fruit of all of their prayers and positive energy. she's a beautiful little peach.

There's no more updates for today. But I do want to share the cutest thing ever. Kaia LOVES to suck, but she can't fit a pacifier into her mouth with the breathing tube in. So, we put it at her lips and she licks it like a puppy. It's so adorable. And, lately, I've been scrubbing my finger and letting her suck on it. She LOVES it. She stares at me and stares at me the whole time as she sucks on it. It's as close as I can come to breastfeeding. I have to say that I've heard many moms complain about breastfeeding and the time it takes and all that. But I wish those women knew how lucky they are to have a choice! I produce mass amounts of milk and have nobody to feed it to. Well...she gets it but at 7ml/hour. I will be dumping gallons of it down the drain unless they take my donation (yes, you can donate breastmilk). Anyway, back to the subject. Kaia loves to suck on my finger and the look she gives me melts me and makes me realize that, though our bonding might be unconventional, it is still there. It is what I live for. It's the most important thing in the world to me. And I thank her for allowing those precious moments with me when all else around her is so irritating, stressful and painful. Here's a pic of her sucking my finger (she has a rash from the arrest on sunday night...ignore it. she's less puffy, rashless and she pulled that IV out of her neck cuz she hated it. so, she looks better now, but the pic is still adorable).

another day

well, i'm posting early tonight because nothing is going to change today. Nothing was weened off of her. Nothing was turned down. Nothing has changed. She hasn't slept a wink today, and she finally just dozed off. I had to turn away the respiratory therapist so Kaia could sleep. She'll be back in 20 minutes. 20 minutes? That's all they're letting her sleep? I've successfully kept the nurses from giving her morphine all day. She's doing fine on tylenol and some tweaks in her position and clean diapers (she HATES soiled diapers...will NOT tolerate!). She had an echo on her heart today that showed a narrowing of a vessel that is not allowing a steady flow of blood to her lungs. They're gonna watch it closely to see if it's a problem. Let's hope it's not, because we can't do another surgery right now. Heck no.

I had a meeting with all of her doctors today. There were 7 of them from all areas of the spectrum. I voiced all of our concerns about the excessive X-rays (like 3/day) and they are going to do one big one each day instead of all these separate ones. She's had over 100 at this point. I'm worried about radiation in her little body. I put the nix on morphine and other heavy hitting drugs that she doesn't need. And I requested more and better communication. they were all super helpful and supportive of our wishes.

Looks like we will be here for several more weeks though. We were originally supposed to be out probably today, but by friday. Now we are here for way longer since her arrest the other night. Please pray for a speedy recovery so we can cut our stay down to a week or two! I can't stand it here. It's so depressing.

thank you all for all the supportive comments and for reading. I am still amazed by how many people care what happens to her, when not many of you have ever met her. She's a precious little wonder, and I am amazed by her strength and tolerance.

at a loss

Kaia's lung collapsed again last night. It just won't stay open. Nobody knows why/how/etc. I'm feel defeated. I want to be in hibernation until this is all over. How are we supposed to take anymore? She can't get off the breathing tube until it opens and stays open for good. We thought yesterday was that day, but then it collapsed again. She's making no improvements right now. It's almost like she's given up. You can see it in her face. She looks defeated too. Her eyes look so empty. And it makes it really hard to look at her without losing it. I can't take this anymore. I'm getting angry at God, and that is not right. But, if he's in control, then why and how could you allow this to happen to her? Please help her. Can't anyone just fix her?

little sprout

that's kaia's name for the day. So far, she's got: butterfly, little bean, little lion, lady bug and little sprout. I make up a new one every few days. She's resting right now...something she hasn't gotten much of due to the number of doctors testing everything on her person and respiratory therapists working to open her collapsed lung again. I swear, every time she is just falling asleep, they have to do her vibes again. Vibes are the respiratory therapists coming in, turning up her tidal volume on the resp. machine and basically massaging her chest with a vibrator wand and then suctioning out her lungs. Kaia likes all the parts except the suctioning. It makes her feel like she's not breathing and she freaks out. Then we have a crying fit that takes time to settle down. then she'll settle and they have to do it again. Poor babes hasn't slept all day, it seems.

She's had a helluva time peeing today too. She's very swollen again...just when she was back to her normal size she had to go and aspirate, almost die and then swell up again. She's now on lasix again, which helps her pee and shed that water weight. It also makes her shed her electrolytes, so they then have to pump her with extra potassium and some other junk.

So, she's had a collapsed lung again. That right one just doesn't want to stay open. But they were able to get it back open today, which is great. It's been collapsed for days now. But she does have two pockets of fluid at the bottom of each lung that they are watching. Those have to go down or they will put drains through her side to drain them. Hopefully that won't happen! I won't let it.

They are watching her labs to make sure her kidneys are still working. She's on so many drugs and isn't peeing, so they were worried that her kidneys might start to fail. Her liver is swollen right now, but that is because of her heart failure sunday night/monday morning. It should go down once the lasix kicks in more.

She has a bladder infection, which is not helping her peeing problem. She's on antibiotics for that. I've also heard "UTI", so i think it spread to her urinary tract. Hmmm, what else? I think that's enough for today. I'm whooped and had a huge bout of crying today. So, I'm feeling very emptied right now of emotion and I have very tired eyes.

Eric brought up a good point today that, though we aren't able to be home and do normal parenting with a healthy child (which, i hope that everyone with healthy children knows how lucky they are), we are learning how we have to be parents by monitoring her so closely while in the hospital. Our job right now, as parents, is to be the eyes that are the only ones on her 24/7 and report what we see. After noticing some inconsistencies with her care and some questionable actions that could have potentially saved her from aspirating the other night, we have to know her the best that we can and know her reactions to certain things and not be scared to report them. That is our role. We are being normal parents...and this is our normal. I love him.

Love you all! xoxo

something is wrong with the universe

I am pissed off at the world today. Hasn't the universe dealt our baby girl enough already? Yesterday, I didn't post because we had a pretty horrible day here. Kaia was throwing up all her feeds. She was fussy all day and just miserable. We stayed at the hospital till 11:45 because i just didn't feel right leaving her. Against my better judgement, I did leave. At 2:34 am, we got a phone call that Kaia had crashed. She stopped breathing and her heartrate dropped. They had to resuscitate her. It took 20 minutes to bring her back to life. She almost didn't make it. She's stable now, but is back on the breathing tube. We were supposed to get out of ICU today. Instead, we just extended our stay for God knows how long. Their best guess at this point is pneumonia. They checked her heart and the function looks good. They think she might have aspirated her feeds into her lungs and got an infection. Nothing is 100% right now....including her brain function. Since she essentially died, the oxygen wasn't getting to her brain. So, we will have to wait days to see if she suffers from any brain damage from the incident. We didn't sleep last night and are pretty destroyed. We feel like giving up. It's just been so much and so emotional. We really don't know how we are going to get through this. Our spirits are really down. It's hard to be upbeat when you see your baby lying like a vegetable in a hospital bed and back on the breathing tubes. When the hell is my chance to have a normal experience as a mother? When do i get to hold my baby whenever I want to? When can she see outside? or our house? or....anything, for that matter? Why does this keep happening where we get our hopes up and then almost lose her again and again? I hate the universe today. It's cruel and unfair. She's so tiny and has been through so much! She's gotten so much blood and shed so much too. She has bruises all over her body from them trying to fit central IV lines into her tiny veins and missing. She's got vomit all through her hair from them having to pump her stomach last night. We love her so much and I really have no idea how eric drove us here last night as we were shaking violently from head to toe, thinking she was going to die before we got here. This is NOT HOW IT'S SUPPOSED TO BE! I just feel like swearing and throwing things!
and to top it off, my mother finds out if her cancer is stage 3 or stage 4 today.
Please pray everyone. Please pray for my family, their health, and that we keep it together when it all looks so bleak. Thank you.

slow flow

Hello all. We spent another lovely day here at Rainbow with Kaia. I held her for 3 hours today. She was super fussy (before i held her) and the nurse thought she needed more morphine. She doesn't need it for pain anymore, but she's been showing signs of withdrawal (very common when they've been on it for over a week), including unconsoleable fits of crying/refusing pacifier/hot sweats/etc. But I asked that i hold her instead of them giving her another dose of the junk. And she was perfectly peaceful. I'm convinced that she's weened off the stuff and just needs held more. The nurses don't hold her. Anyway, she's been morphine free all day now and is just fine. We are trying to feed her out of a "bottle", which is actually a syringe with a nipple attached. It flows slower than a bottle so she has to work a little harder, which will get her ready for the breast. This has been a very slow going thing for her to pick up. She hates eating (wonder where she gets that...). She tastes milk and tries to spit it out. She loves her pacifier and i think she's wondering why the big pacifier is squirting in her mouth. Anyway, we can't leave this hospital until she learns to eat, which is looking like it could take a week. Let's switch up the prayers to "Dear God, please let Kaia like mom's milk and drink the heck out of it!". :)
So, cheers to the bottle, everyone!

breathe easy

Kaia girl came off her respirator this morning! yay!!!! She sounds like a little roaring lion. Her poor little voice box is shot from the tube, and she has lots of phlem. Normal stuff. Coming off the vent means we get to hold her again! She still has tons of wires and stuff, so, we can't pic her up, but we can hold her. You can see that she is more blue than she was pre-op. This is because of the way they had to reshape her heart to get blood to her body. She is only 75-85% oxygenated, which makes her blue because unoxygenated blood is blue, not red. After the second surgery, she will be at 85-90% and after her final surgery, she will be at 95%....so, in 3.5 years, her color will be back to the more olive tones she had in her earlier baby pics.
She is getting the IV tube pulled out of her belly button, as I type. And she is NOT getting that evil PICC line that they kept messing up. The originally had to give it to her because two of the meds she was on could not go through the same line. But she is off both of them today. So, take THAT you evil PICC lady! Kaia didn't like you and neither did we. (She really was a witch, so i don't feel bad disliking her). She will be out of ICU by the end of the weekend (which means monday). Stay tuned for further details. I think that is all she will have done today. Horray!

Day 9 is full of blah

First of all, Kaia is doing really well. I will start with that. It's just another day of no real changes, and that is always a bit disappointing, even though she's doing well. She's down to 16 breaths/min on the respirator. Their goal was 15 before she came off, so there is a chance she will come off of it tomorrow. That is great news! The bad news for today is they've tried twice now to get that PICC line in. That's the line that goes through the inner elbow, into a vein and is fished all the way to her heart. The first time they tried, they couldn't get it in the vein. So, they tried the other arm and they got it. They finished the procedure, but then (in checking to make sure it was in the vein via x-ray & ultrasound) they realized they had fished it through her artery instead of her vein. So, they had to take it out. Had they left it in, it could have caused arterial spasms and rupturing, etc. Mom was pretty pissed off that they got it wrong, but what can I do now? They are going to try again tomorrow. They need to get this line in before they can increase her feeds and before they can get other stuff out of her. The IVs are all going through her belly button line now and that is supposed to be only used for a week, but they've been using it for 2.5 weeks now. So, it is really important that that PICC line goes in and goes in correctly tomorrow. BUT, now kaia's arms are all bruised up and super sensitive. She's not a happy baby right now. It's really sad for me to watch. I wanted to punch the doc that put the line in wrong, but I held my composure. So, we have no pics or anything today. She's a little less puffy than yesterday, which is awesome. She's starting to look like our baby again. Here's to hoping she comes off the respirator tomorrow! Friday will be a huge day! She gets her staples out, the PICC line in and the respirator off. So, we will be really busy around here. Stay tuned!

Day 8 post-op

Well, here's our little puffer fish in all of her swollen glory. Believe it or not, she was more swollen yesterday. Our baby has a really defined chin, normally. All that skin is water logged. So, she actually didn't get any feeds yesterday (due to the swelling). But they do have her on 5ml/hour of breastmilk now. So, we are hoping that she gets some of this swelling off. Everything is waiting on that. Originally, they thought they would be able to get her breathing tube out today, but now they are saying end of the weekend. That swelling is all around her chest and stomach and neck, inside and outside. So, her lungs are swollen too, along with her airways. She's been like this for days and is having a rough time getting smaller! We are getting impatient. I'm dying for that tube to come out of her mouth. Once that happens, it's only "a day or two" until we can go home (which usually means 3-4 days). Anyway, you can see her staples in this pic. The doctor will take those out tomorrow and replace with tape. He likes to staple to allow for more airflow for healing. He takes them out in 3 days after putting them in so they don't leave track marks. She will remain gauze free from now on. She got two more drain tubes taken out of her chest today, leaving only one. So, we are left with one drain tube, one respirator tube down her throat, one tube (feeding) down her nose, one art line in her right wrist, one IV line going into her belly button, an arterial line going through her chest to her heart, one pulse/ox detector on her foot, one temperature monitor on her side, and three heartrate/bloodpressure/etc electrodes. That is a helluva lot LESS than she started with. Mom and Dad are happy, but we are getting really antsy to get that breathing tube out! Tomorrow, they will replace the line that goes into her belly button (that feed her all her IV meds) with a PICC line that goes into a vein in her arm and follows that vein all the way to her heart. I guess they need her belly button to heal and it's not ideal to have IVs going in there like that when she's on feeds. That is all i know for now. Thanks for reading today!

Can I get some food food?

Kaia gets to eat today, yay! They're going to start her off really slow with 1 milliliter/hour, but at least she gets something! she hasn't eaten since June 1st. Somehow, she weighs 8lbs though. I think it's fluid retention from all the IVs. She came in here at 6lbs and hasn't eaten since. I am very excited for her to finally get my milk! I've been working so hard on pumping every 2.5-3 hours for her, and we now have a stockyard full of milk for her. She should be getting off her breathing tube in the next couple days or so. We are hoping to be out of here by late next week. Hospital living is really getting to us. There is no privacy now. We did have a nice little "sleep room" just for us while she was on ECMO. But, now we have to live in her room with her and all the beeps and all the nurses and doctors and respiratory specialists and stock pilers and cardiologists and and and and. So, pray for getting off of those breathing tubes. the sooner she does that, the sooner we can go home where we belong. It's going to be so great to finally be able to live a somewhat normal life with her at home...like a normal family with a newborn. We were robbed of that experience all these weeks, and it's finally going to be our turn! We are truly just grateful that she is still here with us and thriving. I think we would live in the hospital forever if that is what it took. More news later.

Picture pages, picture pages!

While Kaia is getting her chest stitched/stapled closed, Eric and I passed the time by downloading and then uploading tons of pics! They go from pregnancy, to our due date, to her birth date, to her stay here at rainbow. The last ones were taken yesterday with her bunny that one of the nurses gave her. She hugs it and sleeps with it always. It's her little buddy. I'm not sure where the best place to upload images is, but I have a photobucket account, so i put them there. If anyone has any other suggestions, let me know and i'll think about posting them elsewhere instead.
Here's the link! http://photobucket.com/kaiabirth

Kaia's our tough girl!

Well, after surgery, her heart was proving too slow and weak to support her. The doctors thought she would have to be on life support for a week, instead of the initial 1-3 days they had prepped us for. That was a huge blow. BUT, Kaia decided one day that she needed to kick some medical butt and turned a big corner and they took her off of her blood pumping machine yesterday! Her little heart is doing all her work for her and she looks great! She's going to be a little blue in color until after her final surgery at age 4 because her blood isn't fully oxygenated, so she has a lot of blue blood running through her. But, she is a little doll and is fighting hard and strong! She will be on a breathing machine for another 5 days or so, until her lungs get a little better. They collapsed from surgery and the lack of use. So, the machine is making her breathe big deep breaths and she is inflating just as suspected. I suspect we will get to hold her in a week or two. Momma can't wait! Her chest is still open. They leave it open so the swelling doesn't put pressure on her heart or lungs. But they are closing it tomorrow and she will get one more tube removed. So, we went from 6 tubes (shown above....the two thick blood ones were attached to her blood machine that was pumping for her) and will be down to 3 by tomorrow. yay! Keep the prayers coming as every minute is a struggle for her. She is on tons of morphine to keep her comfy, but when she wakes up, she looks freaked out and it's really heartbreaking! I know she just wants held. It's so ironic that I went from being an "all natural birth with nooooo meds so the baby didn't have any medicine in her blood" to having a child who relies totally on medicine to keep her alive right now. I guess the medical industry has tried me and won. I'm a believer. Without modern medicine, my baby girl would NOT be here today. I've decided that nobody can call her "angel" because angels are people that have died that watch over you. And she is very much alive and can't wait to be hugged by everyone!

oh kaia belle

Hello everyone. As most of you know, our baby girl Kaia Belle (Kay-ah) was born with a heart defect called hypoplastic left heart syndrome. I can't go into details right now as to what that is, but there is info on the web if you are interested. We are very lucky that a night shift pediatrician at St John's Westshore heard a "heart murmor" and sent Kaia to Rainbow to have it looked at. Had we gone home with her with this condition would have been fatal. We truly believe that God has watched out for her from the time and way she had to be born to the time and way they found out about the defect and will continue to watch over her her entire life.

Eric and I are extremely touched and overwhelmed by the outpouring of support, emotion, help, prayers, love of family, friends and complete strangers. Because of all of you, we are holding strong. I never could have imagined the numbers of people we have praying for us right now. It has to be in the thousands. It's incredible to know that people who don't even know her love her so much. We know that Kaia will make it. The doctors called her the "poster child for hypoplast kids" because she is staying so stable and gaining strength to make it through surgery. Her surgery is tuesday. After the initial surgery, she will have two others. One will be at 5 months or so and one at 3-4 years old. With the final surgery, her heart should work at 95% of a normal/healthy human heart. So, that is hopeful! She will be under cardiac care her entire life, as she will have two chambers doing the work of four.

This certainly was a shock to Eric and I. I think we didn't breathe for days after we got the news. Any parent knows how scary and heartbreaking it would be to see your newborn baby go through something so traumatic. All we want is to hold her when she cries, and the most we really can do is cup her head and hold her little fingers. We love her so so much....more than we could have ever anticipated, and we really want to thank everyone for their loving support. Please keep in mind that the most critical days will be the first week AFTER her surgery, when her body is weaning off the life support machines and learning how to work on its own. So, please keep the prayers coming, even after tuesday! And, if you can find the time, please read the email below about the Kandles for Kaia campaign my cousin Karen started. (thanks Karen!). We love this idea and will visualize all of the candles lit for her on tuesday as she's being operated on.

Just wanted to update everyone. We love you. We will share pictures when we have time to download them. ;)
Keep the positive vibes flowing!