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!