Aili Rae

8/3/11

2011-08-03T18:48:00.001-07:00

Aili is doing great! I think she had a great day. Clay had a doctors appt so he had to leave at lunch time. We brought him to his appt and stuff, so Aili stayed at the hospital by herself. When we got back around dinner time, she was happily sitting/playing with a nurse. I guess she basically spent the whole day with them. Everyone loves her and thinks she's adorable! They gave her a bath, washed her hair, dressed her up & gave her pig tails. She looked super cute! She did ask where Daddy was all day, but she did good & was happy.

Her wound is looking better. We didn't get to see it ourselves, but they changed her dressing today and said it looked better than on Monday. She has been on two iv antibiotics this whole time. One is zosyn & I don't know the name of the other. They changed the second one to something else, but I think that was part of their original plan.

8/2/11

2011-08-02T20:24:00.000-07:00

Aili is doing great. Her infection is called pseudomonas. It will require her to be on IV antibiotics for 7 days. We started the antibiotics on Monday night, so we should hopefully be done and allowed to come home early next week. They will just have to keep an eye on her and see if these antibiotics are working and doing their job! So far they seem to be. She doesn't have any fever and her white blood cell count is normal. I think they may take her dressing off tomorrow and see how her wound is looking. Right now it is covered with ionic silver that helps keep it clean, because it's antimicrobial and also keeps the area moist (in a good way). Then it is covered in a breathable bandage.

She seems to be in pretty good spirits, but of course would like to come home! Clay has been staying with her and I have been at home with the kids. All the kids and I went up with Clay tonight and ate dinner with Aili. I made Stromboli for us, which was great. After we ate and hung out a little, the rest of us came home.

The sucky thing is Aili is at the age, where since Clay is in the room she won't really nap or sleep like/when she should. I know she didn't nap today and when I called right before 11 pm tonight, she was still awake. She normally takes a nap after lunch everyday and then goes to bed at 8 pm.

Anyways, she seems to be doing great for the most part.

Back in the hospital

2011-08-01T14:17:00.001-07:00

Well we went to her second post op appt. The top of her incision is infected. It's infected with something that isn't usually in wounds, but usually found in like UTI's & respiratory infections. They can only do IV antibiotics, because the only pill approved is for patients over 18. We were told to expect to be here for the week.

The Fontan - My Amazing Girl!

2011-07-27T21:06:00.000-07:00

Aili Rae had her Fontan on Monday the 18th. We had to show up at 6 am. She went into surgery around 8:30 and was done by about 11:30. She did amazing! She was extubated that night!! On the 20th we got moved out of the CICU and into the HKU (Heart Kidney Unit, the hospitals step down unit). Then we went home on the 22nd!!! I have to say that Aili is AMAZING! I've never heard of anyone going home from a Fontan that fast! She was only at the hospital 4.5 days and that 1/2 a day was us waiting for a pharmacy to deliver her meds. She is healing great! We have our first follow up appt on Friday.

Right out of surgery....

Feeling OK...resting & petting her new panda!

Out of the CICU!!

On our way home :)

Feel free to pass this around! I hope that it can give others hope for their little ones!

A year ago today

2009-12-08T23:17:00.001-08:00

A year ago today you had your first open heart surgery. I remember waiting the 13 days from your birth to today, wondering every day when your surgery would happen. It seemed everyday someone else was sicker and needed to come first, which was good that you weren't as bad off yet the anticipation still built. Then the day finally came. You were in the OR for 12 hours. 12 HOURS!!! 12 hours of wondering, waiting, questioning. Finally you were out and we could see you. You came out on ECMO though, a hear-lung machine. Last year we sat at the hospital waiting, this year we spent the day together running errands. A year makes such a difference. You are doing so well and doing so much!

A year ago....

Now...

Happy First Birthday Aili!!

2009-11-28T20:26:00.003-08:00

Aili is ONE!! YAY! We have made it through an amazing year : ) Here are a few pictures of her birthday....

Swallow study & Feeding therapy

2009-11-14T12:37:00.000-08:00

We had a swallow study a while back and it went OK. She still needs to be on 'nectar' thick liquids. They said she still has a very high possibility of aspirating and we have to watch her very carefully. When they did the nectar thick barium, she didn't aspirate, but there was liquid left there, that she could aspirate. (sorry that probably makes NO sense....haha!). They then tried 'honey' thickness barium, which she aspirated really badly. She turned red, her eyes watered and she choked/coughed. They did have to use a different nipple with the honey thick, so that may have been part of the problem. So for now we stick with the nectar thick and watch her carefully. Her feeding is still pretty slow going, but she is starting to eat more solids and the therapist said I am doing everything just like I should. So we will just keep at it. At least she doesn't still have a NG tube!! We got her weighed the other day at WIC and she weighed 16.5 lbs. She's still such a mini compared to everyone her age, but she is still growing at her own rate. I think she was like 26 or 27 inches...I always forget that part! We will keep her on formula (at 27 cal. per ounce) after a year and continue on working on solid food. Here is a picture of the cutie.....

Gearing up for Aili's Birthday!

2009-10-22T21:44:00.000-07:00

So we are getting ready for Aili's first birthday! What a special birthday?! It's amazing to think this time last year I was majorly pregnant and going to tons of appts. It seems like we went to a million appts. too. I remember having at least 3 appts. every week for weeks! Anyways, so I have been coming up with ideas for Aili's party. We have a theme, a cake set-up & party favors. Her birthday is November 25th, but we will be having her party on Thanksgiving, that is when everyone is able to get together. Clay is coming back from Iraq for his R&R for this : ). We are all getting excited. I am trying to get Aili ready to eat some birthday cake too. Well I need to clean my house...

Professional Pictures

2009-10-10T17:16:00.001-07:00

We got some professional pictures done the other day. They were FREE : ) and done so we could send some to our soldier (Clay : ) ). We are all doing wonderful. Clay will be home for R&R in Nov. and Aili will be 1 on Nov. 25th!! Can you believe it??? Anyways, so here they are...

Newborn Swag - My new store

2009-09-08T10:45:00.000-07:00

I have opened a store!! It is named Newborn Swag, and I sell things I have made. Feel free to check it out and pass it along to friends. Thanks!!

NewbornSwag.blogspot.com

NewbornSwag.etsy.com

http://www.facebook.com/home.php#/pages/Newborn-Swag/130091108258?ref=ts

Just tonight

2009-09-07T00:57:00.000-07:00

When your baby is going through the things that Aili has, you just kinda push your feelings to the side and stay strong so your baby can. When Aili is in the hospital I don't feel panicked, because I trust the doctors and nurses and because I need to stay strong for everyone.

Then months later I think about it. It's all I can think about. Nights like tonight are when I feel panicked. I panic about what could have happened and what has happened to many other families. I grieve for those families. I am thankful for my baby. These nights are when I want to break down & cry. I can't help but think about what she looked like, how she couldn't do anything, what she must have felt & thought.

So although Aili is doing great I still worry. She is my baby and I love her. We can always use the prayers of friends, family & strangers and so can so many other families dealing with the same issues.

My new Hair : )

2009-08-28T23:59:00.000-07:00

Crawling : )

2009-08-28T23:27:00.001-07:00

I know it has been a LONG time since I have updated, so here is a video of Aili crawling. I think she has been secretly crawling behind our backs, but I finally got to see her do some good crawling on August 27, 2009. Here is a video of it.... (I will update more later!)

RIP Dear Geordyn

2009-07-22T22:58:00.000-07:00

As some of you know there was a little boy that was born about 2 weeks after Aili. He also had hypoplastic left hear syndrome. I had once asked for prayers for him & his family. His family also lives on Fort Lewis & the kids had their surgeries at Seattle Childrens, because of that I got to meet them and get to know them. Sadly Geordyn lost his fight and passed away on July 17, 2009. I am once again asking for prayers for his family & friends.

Here is a memorial website for Geordyn. http://www.geordyn-mercado.virtual-memorials.com This way you can look at him, see his family, read about them, & maybe leave them a message.

Thank you!

A quote

2009-06-16T22:26:00.000-07:00

This is a quote I found on a friend's blog. I just had to put it on here, so I could remember it for later. It is so true. So far I have done pretty good with keeping up with every little thing, but it is much more difficult to catch and remember every little moment when you have more than one....

"The first child got me shiny new, like a new pair of shoes, but he got blisters, too," writes columnist Anna Quindlen. "The second child got me worn, yes, but comfortable."

More to come later.

Home Again!

2009-06-04T16:29:00.000-07:00

We are home again! We got home on Monday night. So Aili was only in the hospital for 6 days!! WOW! She is such a strong girl! She is doing great and healing well. She is pretty much back to her normal self, she rolls sometimes, hangs out & plays. She has been pretty darn cranky lately. We're not sure if she is in pain or what. I don't think she is in pain, because the hospital gave her pain meds on Sunday night and hadn't needed to since. I have given her tylenol a few times, to see if that helps. Well we are super bust as usual! I will post some pictures soon when I have a free minute!

Nothing too interesting...

2009-05-30T01:04:00.000-07:00

to report. Aili is still doing great. There weren't really any changes from yesterday to today. She was less swollen today and less cranky because of it. It takes the body a few days to a week to adjust to how the heart is now. Because of that usually the upper half of the body swells, which can causes headaches. So she is doing good and is much happier. The occupational therapist (OT) came in today to see how Aili is feeding. She is doing great with that; suck, swallow, breathe : ). She wasn't as vigorous as usual, but that is to be expected after surgery. So the OT is going to come by tomorrow and feed with her again to see how she is doing.

Clay had to go down to Fort Lewis today to do some paper work, so the kids and I hung out at the hospital all day. Tealia & Jim (Andy's Dad) came by and visited with us, which was nice. Otherwise we just kind of hung out, played outside, did school work, etc.

Here is a picture of Aili from today...

Out of the CICU : )

2009-05-28T22:49:00.000-07:00

Aili was moved out of the CICU and onto the regular floor. We now reside in room 4004 on G4 (or for all you people who have no clue what I'm talking about, that's Giraffe 4. 4th floor Giraffe elevator.) I like how our hospital is set up. I really think all hospital's should be like a children's hospital is. They are so colorful and inviting, unlike the normal bland and boring hospitals. Ours has different sections to help everyone find their way around, the Whale section, Train section & Giraffe section. There may be more, but those are the ones I know of. There are wonderful pictures, murals and animal statues throughout, which are bound to brighten any ones day! I will have to post some pictures of it. Anyways, moving on. So Aili's chest tubes were taken out and she was moved to the regular floor. She is doing great and just hanging out. Resting so she can recover. Even at 6 months old she knows what she wants and what she doesn't want. Right away our nurse in the CICU, Zane, said she didn't like the breathing tube and NG tube. We knew she wouldn't because she hated the NG tube before. I think that is why she did so well when they pulled it so soon after surgery. She didn't want it & knew she didn't need it. Now she is working on getting the cannula our of her nose too. Every time she can she tries to pull it out. I wrote on our dry erase board some tips for the nurses so they would know what Aili likes & what she is used to. Like how she likes there to be noise, she is much too used to the TV & Taryn playing in the background for it to be quiet. So for the most part she is just relaxing up there : ). She does still have the cannula for some extra oxygen, but I think that is all she has.

Here are some pictures of hearts (just drawings)...

What a regular heart looks like...

One version of an HLHS heart looks like...

Aili's heart after the first surgery, the Norwood...

Aili's heart now after the Glenn...

Aili was a little more swollen today though. She still looked really good.

Aili's new room...

A room with a view...

I still need to get pictures of the T-shirts we made. My favorite has to be Aili's. It is nice and simple, but looks so nice. Hopefully she doesn't get sick of my new love of things with hearts though : )

There is a wonderful girl everyone should know about. Her name is Jamie. She is the kids "Aunt", in other words my Mom's boyfriends daughter. Anyways, she really loves the kids. She has done so much for Aili & Taryn and for anyone affected with heart disease. She has been raising money for a charity in Aili's honor & it is great!

Today she left a message that we found when we arrived at the hospital...

Amazing
Intelligent
Loveable
Imaginable
Super

Hero
Energetic
Amazing
Rugrat
Tough

It was really nice to get : ).

All these things that people do for us are so great. We really appreciate it. But I think it will be even cooler for Aili when she gets older. She will be able to look back at the pictures, read this blog, & hear from stories from us, about all of the wonderful things people have done and all of the amazing things she has fought through to get where she is going.

So thank you all again, not just from us, but from Aili too!

I also would like to ask for some extra prayers for a friend of ours. I won't go into details or give any names for privacy purposes though. It would be nice if everyone could pray for a little boy that has the same thing as Aili. He is just about the same age as her & also lives on Fort Lewis.

May 27th update

2009-05-28T00:00:00.000-07:00

Aili is doing great. She has been eating today and doing very good with it, about 2 ounces every 2 hours (which is normal for her). She isn't on any extra meds or painkillers. I think they have been giving her just some Tylenol or something like that, but no morphine : ). We slept late today and ended up going in to the hospital in the after noon. Yesterday was such a long day and by the end of it, it was past 1 am when we all got to sleep! Everyone had a pretty good day though. Taryn could have used a nap, but was still pretty well behaved. I managed to get a lot of school work done with Connor. So we got the hospital and hung out with Aili for a few hours. She woke up occasionally and looked around at us. She seemed to really like watching Taryn and Daddy play together : ). Then we went down to the coffee shop to get a drink & to the gift shop to look around. The kids of course found about a million things they wanted, none of which they got...lol! Then we went to the sibling play room, where the UW Huskies were : ). They were there to make T-shirts with the kids. So we made some with their kicker Eric Folk. We had a great time. Here are some pictures from today & I will put some more up of the T-shirts tomorrow!

I have to say we have some great friends & family!! I want to thank everyone for all that they do. All of the prayers & positive thoughts are wonderful, along with the words of encouragement. They mean a lot to us! I would also like the thank Carol for feeding our crazy cats for us & getting the mail, and Toni for watching our sweet baby girl Phoebe!!

Also Thank you SO much Virginia for the wonderful stuffed animal for Aili, it really brightened all of our day!! I know that lots of people are thinking of us, but it was a nice reminder and very unexpected!!! Here is a picture of Aili with the card & cute lion : )

Surgery is done & pictures...

2009-05-27T11:27:00.000-07:00

Our surgeon met with us after the surgery was done at around 8:30. He said everything went great!! We had to wait until they had her all set up in her room in the CICU (cardiac intensive care unit). Getting her all set up can take a long time! Our surgeon thought it should be about 30-40 minutes, it ended up being 2.5 hours. So we finally got in to see her at about 11pm. She looked really good, at least compared to the first surgery. She is doing great. They already took her off the ventilator today and are getting ready to feed her right now! They are thinking she will go to the floor (as in out of the ICU) tomorrow. That's about all for now! Here are some pictures from yesterday. I will put one of her chest & tubes, so beware (her chest is closed, so it's not too bad!)

The Glenn Procedure

2009-05-26T20:06:00.000-07:00

Aili is in surgery right now. We are at the hospital waiting for her to be finished. We packed up practically the whole house yesterday and drove up to Seattle. The Ronald McDonald House didn't have any room but medicaid (para transit) is paying for a hotel. Aili qualified for medicaid because she was in the hospital for more than 30 consecutive days. Anyways, we got up here pretty late. We got to our room which was really small. it just barely had enough room for the 2 full size beds, so Clay was smart enough to tell me to go ask the guys if they had anything bigger available. They did so we got it and para transit would still pay for it. Now we have a room with two queen beds and plenty of room for all our luggage and Taryn's playpen. Plus it has a full kitchen in the room (plates, utensils, stove, mini fridge, microwave, dishwasher, sink)!!! So we are happy with it!

We had to stop feeding Aili last night/this morning at 4 am. She took it pretty well, but wasn't the happiest. We showed up at the hospital at 11 am today & we were told that they had to push the surgery time back because the case before us was taking longer than expected. Although it sucked to have poor Aili not get to eat for even longer we understood that those things happen and know the other parents must have been stressed out! With Aili's first surgery instead of the normal maybe 4-5 hours she was back there for 12! So they told us to come back 1pm. We went and got a bite to eat and ran a few errands, like the bank & got some diapers from the hotel, and then we came back. We signed back in and got her stats. I wiped her down with a special wipe & got her dressed in her hospital gown, which she looks adorable in! So we waited in that room for a long time. During that time we talked to the surgeon, some nurses & the anesthesiologists. It wasn't too bad of a wait, the kids stayed entertained with some toys we brought & a movie in the room. Aili was just tired & hungry, which she finally fell asleep and got a little cat nap in. They came and got Aili at about 3:30. Then they started to prep work, anesthesia getting IV's in, etc. They paged us at 5:30pm to let us know they had begun the actual surgery. They just recently paged us at about 7:30pm and said she was off of the bypass machine and they were doing good. So I guess they are just finishing up the surgery and will let us know.

While we waited we got some coffee downstairs, played in the playroom, got some dinner at the cafeteria, brought Aili's stuff to her room & now we are in the Family room on the computers (updating the blog, paying a bill, etc.).

So I will update again when I get a chance : ) Hopefully I can post some pictures on the next post!

Pictures again....

2009-05-08T21:43:00.000-07:00

Here is Aili holding her bottle....
The 'reptile man' came to Connor's school.... Taryn with the snake...

Connor & his friend Dustin with the snake...

Connor, Dustin & Taryn...

Taryn & Aili....

A sleep over...

Connor trying to put 'bunny ears' on Dustin...

The next day we went to the reptile Zoo...

Surgery

2009-05-08T12:16:00.000-07:00

Aili had another cardio cath. recently and everything looked pretty good. There is some scar tissue where the sano shunt and the pulmonary artery connect. Also the stint holding the other end of the sano shunt is broken, but I guess it is still holding it open.

We just scheduled her second open heart surgery. It will be on May 26th. They will be doing the Glenn Operation (http://www.med.yale.edu/intmed/cardio/chd/surgery_glenn/index.html).

Clay will be home soon to be here for the surgery and time in the hospital. Then sometime after we get home he will have to go back.

Aili rolls BOTH ways now : )

2009-04-30T19:32:00.000-07:00

Here is a video of Aili rolling from her tummy to her back for the first time. Of course she did it when I barely had the camera on her, but she did it!!

Just today...

2009-04-29T22:51:00.001-07:00

Since Aili rolled over yesterday she has been doing it every chance she can : ). Although every time she rolls over she gets mad that she is on her stomach...lol.

But today was a good day. Connor has been good at school. He had a half day and after homework was done, his room was clean & we go home from running errands, he played outside all afternoon. Taryn is good too. Her talking is amazing me, everyday she says something and I have to do a double take to make sure I'm not crazy. Tonight, without me saying we had any with dinner, she looked over and saw some biscuits and asked for one. She is so smart.

And I leave you with a picture of her in her new diaper : ) I tell her I want a picture of her booty and she runs over to the couch and lays down so I can get one...lol.

Taryn wants ham for breakfast...

2009-04-29T08:52:00.000-07:00

Taryn likes ham....

Aili's Cardio Cath.

2009-04-28T21:54:00.000-07:00

Aili had a cardio cath surgery on Friday the 24th. It went really well and we were able to come home that afternoon rather than staying the night. The doctor said he didn't see anything too bad. A little scar tissue where the sano shunt connects to the pulmonary artery. He guessed surgery would be in a month or two, but he will discuss his findings with the surgeons & other doctors on May 4th. So we should know more sometime after that. Here is a picture of Aili in her hospital gown....she is so cute & SUPER mad because she couldn't eat after 4:30 am!!

Aili rolls!

2009-04-28T20:26:00.000-07:00

Aili rolled over today!! What a big girl : ) She is now 5 months old which is normal for a baby to roll from their back to their tummy. She hasn't rolled from her tummy to her back yet, but she never has any tummy time, she doesn't like it and turns really purple.

A bunch of pictures

2009-04-19T13:03:00.000-07:00

So here are a bunch of pictures...

One of Taryn's new diapers...this is a Gdiaper, it's the Earth Day one & we got it since Daddy makes maps : )

Sittin' on the pot :)
Taryn playing in her new sprinkler

We went to meet Dora...Taryn refused to sit with her...so this is the best picture we got : (
The Easter Bunny came : )

Visiting the Easter Bunny...

Easter Egg Hunt!
My first ham : )

At the zoo.....

Appt. with cardiologist

2009-04-02T23:25:00.000-07:00

We had an appt. with Dr. Puntel yesterday (April 1st). Everything went great. Aili weighs in at 10 pounds 2 ounces! He did an Echo and everything looked great. We have noticed that her hands and feet have looked a little blue-r lately, but that is to be expected with her gaining weight. We said we would schedule an appt. with Seattle Children's for an Echo & appt. with their cardiologist and then from there we will schedule her next cardio cath. That appt. is set for April 23rd @ 1:30 pm. After we schedule and do her cardio cath they will decide when we should do her next surgery, which Dr. Puntel is prjecting to be between 6-9 months of age.

So she is doing great. SHe's eating well and gaining weight!

Here is a video I found on youtube that shows an open heart surgery on an HLHS baby at 9 days old. This is NOT Aili, but it is what she had done (at least for the most part). Caution it may be graphic to some!

http://www.youtube.com/watch?v=d2_A-k3DmII

ENT & 4 month Appt.

2009-03-27T21:33:00.001-07:00

On Thursday we went to the ENT & they did a scope down Aili's throat to check her vocal cords. They said her cords look fine & that's not why she has been aspirating.

We had Aili's 4 month check-up with her regular pediatrician today (Friday). She weighed in at 9 lbs. 15 ozs.!!!! He said if she had finished her bottle she would have been 10 lbs. Everything else looked great. She got her 4 month shots too. Her doctor said he fully beleives that when we see her cardiologist next Wednesday he will set up the cardio cath. & from there will be surgery.

Thats about all for now!

Deployments, Goals, & Such

2009-03-22T11:25:00.000-07:00

We had an appt. for Aili on March 13th & she weighed 9 lbs 4 ozs. So she is getting big : )!! The plan is to do her surgery between 4 & 6 months of age, but she needs to be over 10 lbs, which seems to be fast approaching! She will be 4 months old on March 25th! We also had her swallow study on March 6th. They said that she looked best drinking the 'nectar' thick fluid, so she is still drinking from a bottle. She is truly a very smart girl and she is growing so much. She coos & talks all the time. She smiles and giggles too. This last week she started to blow some bubbles. She has been drooling too and we think that maybe instead of being colic-y she has been etting some teeth, because Clay & I noticed some white bumps where her upper K9's would be. Only time will tell if they truly are teeth though. She has been grabbing things with her hands and loves to look at them. She even seems like she may roll over...she has gotten on her side but not all the way over.

Clay deployed last week and finally made it to Iraq safely. I was waiting to say anything till after he got there for everyones safety. Before Clay left, we video taped him reading stories to the kids. They seem to enjoy them. Connor watches his at night & Taryn watches hers a lot...every night and sometimes a few times a day too. Of course Aili is in the room so she gets to hear daddy's voice. We made a video for Clay to bring with him too, with the kids playing and stuff. We also got the kids some special things with Daddy's picture on them. We got them from hugahero.com. Connor picked a dog tag with Daddy's picture on it, Taryn got a Daddy doll & Aili got a Photo tag blanket. We are still waiting on those to show up though. We have been keeping busy and doing projects. Yesterday we played with playdoh & today we finger painted. Tealia stayed here for the week and it was nice to have someone to hang out with!! I have some goals for while Clay is gone.

1. Make our house clean & organized
2. Make the girls baby books
3. Sell stuff we don't need
4. Make a schedule

And I'm sure I will come up with more.

I also have some plans for us while Daddy is away. I'm thinking that every weekend or every other weekend, we will have a 'Daddy Day'. For Daddy day we will go eat lunch somewhere Daddy would like (i.e. McDonalds, Burger King, etc.), then we will go and pick up some small things to send to him and lastley we will come home and either write him letters, draw him something or make him something. Then on Monday I can send the package to him. I also thought of putting a dollar in a jar for each kid every day, then when Daddy comes home they can have a special day with Daddy with the money...like Chuckie Cheese, Pizza & a movie, etc. Anyways, I got these ideas and some others from the hugahero site.

Also we went bowling before CLay left. It was the kids' first time bowling and they loved it!! Connor, Clay & I all got a strike on the same frame and Taryn got a few spares!

And I have already learned something new since Clay has been gone!

Some Pictures : )

2009-03-01T22:45:00.000-08:00

Just a few pictures

A dog, a Ball, & Aili

2009-03-01T22:04:00.000-08:00

We got a new dog, named Phoebe. She is a whippet, which is kind of like a little grey hound. She is very smart so far. She is doing wonderfully with potty training and learning 'tricks'. She loves to play with the kids and tries her hardest to get the cats to play with her too. Oh and Phoebe was born on the exact same day as Aili.

Click

Here

for more pictures of Phoebe.

On the 27th we went to a military ball. They called it the Courage Ball and it was because Clay will be deploying. He should be leaving in about 2 weeks or so. They don't give you an exact date, just kinda a time frame, then they let you know like 8 hours before. This keeps everyone safer, so things don't leak out on the internet or elsewhere.

Click

Here

for more pictures from the ball.

And now for Aili, she is doing great. Last post I put the wrong weight down. She is currently at 8 pounds 9 ounces ( I had interpreted it wrong). Anyways, she gained 6 ounces last week, which is great!! She has been eating great, still eating from the bottle.

We also took some family pictures today.

Click

Here

to see more family pictures.

Weight Gain and NG Tube

2009-02-13T18:19:00.000-08:00

At our appt. this week Aili was 3.7 kilos, which is 8 pounds 14 ounces...so 3 POUNDS up from her birth weight : ). She is looking fatter and doing good. She had been spitting up during/after her feeds, so the doctor said that if she spit up for 3 or more of her feeds to try taking the tube out and see how she does with the bottle. So yesterday morning on the 12th, we took the tube out and she did great all day and night. She did good today too. She has only spit up once since we took it out, where to day before taking it out she spit up 4 of the 5 feeds (she slept through the other one). So for now no tube and we a re still gaining weight! I made her a shirt for tomorrow, so I will put some pictures up!

# of Frozen Bottles

2009-02-04T19:42:00.000-08:00

In case anyone was interested...there was 738 of those frozen bottles. Those were all from while Aili was in the hospital for about 6 weeks.

Doctor Appt. & Pictures

2009-02-04T19:25:00.000-08:00

We had another appointment for Aili today. She gained weight again. She was 3.55 kilos...so 7.8 pounds. Everything else was good too. We are going up on her night feeds. Now she will get 27 ml per hour over night.

Clay after nose surgery....

Aili in her pretty new outfit with her new blanket : )

Taryn in some big girl panties : )

Food & Nose Jobs

2009-02-02T12:04:00.000-08:00

Well last week Aili had gained weight again, which was great!! She weighed in at 6 lbs. 15 ozs., so up 6 ounces since we started the breast milk. She also still didn't have any fluid build up, so the doctor gave to OK to switch to all* breast milk.

*Breast milk is only 20 calories per ounce (no matter what you eat!), and Aili needs to have 30 calories per ounce, so we do have to put a little formula in the breast milk. 4 ounces of breast milk with 1 scoop of formula.

Anyways, so she is doing great.

Back when Clay was in training he broke his nose. He didn't go to the doctor right away, so by the time he did it was healed and not a problem. They just told him that if it started to bother him or his septum deviated too much then they would fix it. Well his septum finally got bad enough (about 2 years after the break). So on the 29th he had septorhinoplasty (aka a nose job! : ) ). He is doing pretty good. He is in pain of course, swollen and has some beautiful black eyes. I will post a picture later, bu first I have to find some.

Clay's mom was here for a few days and just left this morning. That's about all for us right now though.

Swallow Study

2009-01-22T22:00:00.000-08:00

I brought Aili in for her swallow study today. They use something called barium and put it in her formula (http://www.emedicinehealth.com/barium_swallow/article_em.htm). They tried the formula as 'nectar' thick and it showed that she was aspirating a little. So then we tried 'honey' thick with a larger nipple. It was really hard for her to get any formula out. Even with this thickness she still aspirated some. So they said that we need to do all of her feeds through the NG tube for another month. Our next swallow study will be on March 6th (the day after Clay's birthday). We are supposed to have her suck on her paci while she is 'feeding' so that she will associate sucking with her stomach getting full. This will also help strengthen her sucking. The speech therapist also said that I could pump and that after I am done pumping I can put Aili to my breast which will also help her get batter at sucking.

So another month at least of NG feeds and lugging around equiptment.

First Bath

2009-01-22T16:00:00.000-08:00

Yes I know she is already 8 weeks old and just got her first 'real' bath....but it finally happened. While in the hospital she had special antibacterial wipe down type baths and since she's been home it's been similar with sponge baths waiting for the cord to dry up enough and her scars to be OK. So last night on 1/21/09 Clay & I gave Aili her first real bath. It was pretty funny because she actually liked being in the water. She was mad before getting in the water and got mad when we took her out though. Here are some pictures....

More on coming home

2009-01-22T10:38:00.000-08:00

We had our first check up on Tuesday the 6th. That went good. Aili had been spitting up and kinda gagging. The doctor thought it might have been her reflux so we up'd that medicine and she has been fine since. Then we had another check up on the 13th. She had lost weight which wasn't a huge deal, but she should be gaining. To try and fix that we up'd her nighttime feeds from 15 ml an hour for 8 hours to 20 ml. At that appt. we also tried giving her a bottle with a preemie nipple of just water. She did really well so Dr. Puntel said to do that a few times a day for a few days, then formula a couple times a day for a few days too, then we could try at each feeding. So we did the water a few times, but she would get SO mad when we would take it away. Since we couldn't just let her have water for a feed, we decided to just try the formula. She did great and so we just went straight to letting her try at each feed. Some feeds she would eat only 10 ml from the bottle and the rest through her tube, but some she would down the whole bottle, which is at least 45 ml but sometimes we would give up to 60 ml.

45 ml = 1.5 ounces

60 ml = 2 ounces

We had another appt. on the 20th and she didn't gain any weight, she stayed about the same. She is 2.95 kilos right now, which is 6 lbs 9 ozs. I'm amazed that she is almost 2 months old (on the 25th) and she still weighs less that Taryn did at birth (7 lbs. 6 ozs.). Anyways, since she still didn't gain any weight we up'd her night feed to 25 ml. Clay and I thought that maybe she isn't gaining because the formula she is on only has certain fats, because the ones in regular formula and in breast milk made her have fluid build up in her chest. So we asked if we could start giving her some breast milk again. He said that we could start with 2 feeds during the day and we will check tomorrow, which is Friday, to make sure that fluid isn't building up. She should be fine though, since it has been 4 weeks since we started the formula, so her chylothorax should have

cleared up (http://en.wikipedia.org/wiki/Chylothorax).

We also have brought her to a Speech Therapist twice since we have been home. We go to her for feeding. She said Aili was doing a great job, but she sounded like she was swallowing a little late, which could cause her to aspirate. So we tried a thickener for her food. That seemed to help for a little while, but after a few days she sounded the same. She makes a gulping noise when she does this. I guess by swallowing late the formula kinda pools in the back of her throat, if it's just pooled back there then she could breath it in. So we go in today for a swallow study. For this they give her different consistencies of fluid (regular, nectar thick, & honey thick) to see how she is swallowing and what would be best for her. I think they actually video tape it somehow. After they are done with the study we will get to see the video too.

Well here are some pictures....

First time being held after her surgery. She hadn't been held in almost 3 weeks!!

In her wedge for her reflux. She sleeps in this. Also the blue straps are what I was talking about in an earlier post. She had manage to pull the top one up in over her face, which made her monitor alarm!

On our way to buy a double stroller off of craigslist...it was practically a blizzard.

First picture at home :)

Taryn being a good Big sister and helping Aili with her paci.

Grumpy Taryn with Uncle Andy & Aili

Tealia & Andy with Aili

Farmer Taryn

How much milk???

2009-01-22T10:10:00.000-08:00

So I have a little game for everyone. I have been pumping since Aili was born...I have of course been saving the milk. Well when I left the hospital there was 7 plastic hospital bags and 2 paper bags full of the plastic 2-2.5 ounce bottles (some not completely full though). So I thought people might like to guess how many we had coming home from the hospital. Here are some pictures and I will post the answer later in a new post.

Just getting started (by the way we bought that freezer just for milk and it is a 8.8 cubic foot freezer...almost completely full)

All of the bags

New Years

2009-01-21T21:12:00.000-08:00

Well I was pregnant for my Birthday this last year (2008), which just so happened to be my 21st Birthday. I have been waiting about 6 months to finally be able to go out and use my ID. So for New Years Eve our Friends Andy & Tealia come out and we went out. We basically just went to an Irish bar had a drink and talked. So I ordered a Washington Apple and I also had a small glass of Champagne at 12. Here are a few pictures : )

Christmas

2009-01-21T20:49:00.001-08:00

Sorry I haven't posted in such a long time...we have been busy, but now here are some updates....

Christmas was great. We spent Christmas Eve at the Ronald McDonald House. There was supposed to be a Christmas Cruise, but that fell through because of the weather, which had been CRAZY with lots of snow and ice!! So instead they still had a really nice dinner at the House. So we had dinner there and got a few things for the kids and ourselves. They handed out Santa hats, beanie babies for the kids, disposable cameras, special necklaces, and mini radios. Places had donated the items, like the cameras were from Bank of America and had there logo on it. They also had a few other things that were brought in. Both kids got one of the toy Chevron cars (the gas station) and Taryn got a stuffed Panda. They also both got $5 gift cards to McDonald's which we just recently used to get some Happy Meals : ). Anyways, Santa was supposed to come, but was running late because of the weather. Connor kept saying stuff about how he wouldn't be the real Santa and we told him you don't know that. Well part of the cruise is the committee buys each kid presents ($150 towards each child you have....I know CRAZY!!!). So after dinner and meeting Santa we went back to our room and there were presents for the kids, so we told Connor that must have been why Santa was late. They were ALL excited. Connor got a star wars video game for his DS, a star wars transformer and some clothes. Taryn got a play kitchen, some cats and some clothes. And BEST of all Aili got a motion sensor monitor (it will alarm if she stops breathing) and some clothes!!!! We were SOOO thankful for all of that, especially the monitor, which by the way we have been using and has gone off once when she got this strap on her wedge over her face! So after we did those presents we packed up, said hi to Aili and went back to Fort Lewis for the night. We spent the night down here and opened presents in the morning. The kids got a few presents from some family members and from people Clay works with, but the majority came from our 'Adoptive Family.' Fort Lewis has a program that you can enroll in if you qualify. We enrolled and our family was 'adopted' right away. We were adopted by the Washington State Liquor Control Board. We are SOOOO thankful for everyone that helped us out for Christmas. We made sure to take lots of pictures for everyone and the kids' faces were priceless. Connor got tons of Science related stuff, which he is loving and Taryn was in Kitty Cat heaven!!

I promise to everyone that I am working on Thank You's. I was just able to buy some cards and I am going to begin writing them as soon as I can. There have been lots of people that have helped us behind the scenes though. many people that Clay works with sent us meals, canned foods, and even chipped in some money to help out. I want to Thank them also!!! Everyone has been such a tremendous help and has really helped with keeping us as stress free as possible!

Anyways, here are some pictures from Christmas....

So how did we get SO many presents??? Well if you look at the left side of the tree, I think almost everyone one of those is from Connor's Great Grandparents. They thought that Connor wouldn't be getting a Christmas because of all that was going on this year and went ahead and sent him at least 20 presents!!! So we came home to this huge box full of gifts for him....boy were we surprised. They were also nice enough to send Taryn and Aili a present too, which we thought was very nice since they aren't related in anyway to the girls.

Opening their stockings

We are home : )

2009-01-05T18:54:00.000-08:00

Well we were able to come home on Friday. Aili is doing great. She is still being fed through a NG tube. She has 5 feeds throughout the day and then a continuous one throughout the night. She will be 6 weeks tomorrow. We have our first follow up appt. on Wednesday at 10 am. Everyone else is doing really good too. Connor went back to school today and Taryn is liking having a baby in the house. I have been pumping this whole time and we had to buy a freezer just for the milk.

No more Chest Tube : )

2008-12-29T08:56:00.000-08:00

Yesterday Aili had her chest tube taken out : ) They did an x-ray a while later to check and see how everything looked and it was great!! She did great all day! I don't think she even spit up. She is on a higher calorie formula and had 14cc's an hour through her NG tube. On Friday we started dipping her paci in the formula and then giving it to her. She seems to be getting better at it and tries to suck. The nurse thought that since she has gotten better and seems so interested that she will be ready for the binky trainer or even a bottle today! So we will see when we go in. It seems like she is getting better everyday. We are hoping to go home soon. I think all Aili has to do is get off of her morphine and get feeding down then we are home free. They will do another x-ray today to check for fluid to make sure she is doing good without the chest tube. That is all for now and I will update more later :)

Lots of pictures!!!

2008-12-27T03:24:00.000-08:00

I promised more pictures, so here are lots!!!

Sledding...

Some video of us sledding!

Connor

Clay

Clay & Taryn

Kiersten

YAY, YAY, YAY!!!!!

2008-12-26T10:18:00.000-08:00

So yesterday on Christmas they took Aili off of the ventilator, changed her diuretic to a non-continuous one, and also changed one of her heart medicines to a non-continuous one too. So that was a great Christmas present! Well they just paged us to tell us that they are moving her out of the CICU and to the regular floor!!! YAY!!! She is healing and improving : )

2008-12-23T00:15:00.000-08:00

Aili is doing good as usual. Her stats are good :). The only thing that has changed is they had started her on breast milk. Well then the fluid that is in her chest turned a milky color, indicating that her lymph nodes were leaking this other fluid. I guess that means that the pressure in her chest is causing extra pressure on one of her veins. Because of that pressure she can't process the fat in breast milk. (Or something like that...we don't understand it fully). So they started her on some kind of special formula that doesn't have that kind of fat in it. I was pretty upset about that at first and it does still bug me, but I can't do anything about it. She will be able to have breast milk in time, but for now the formula is better for her.

They have been slowly lowering some of her things. Like they lowered her morphine today by a little. And every couple of days they have lowered her ventilator a little.

Tonight she did throw up twice within a few minutes. They think it may have been because they had just finished moving her around, which may have upset her or it could be because they changed her from breast milk to formula to another formula within the last 2 days. So they are just watching her to see what caused it, so they can change it. One of her stats did go down after it. It was one that indicates how deep her breathes are...they went from a 4-6 to a 1-3. But after a little while to calm down and a little suctioning she went right back to normal and she is doing fine.

So overall everything is going good and we are still making progress. I will post some pictures later like I already promised!

A video for a laugh!

2008-12-21T21:08:00.000-08:00

I will update a little later...but today we went sledding with the kids. I will post more pictures and videos, but this one is too funny....

and now I leave you with my Mom...

Improvement!

2008-12-20T12:32:00.000-08:00

Friday (12/19)

Aili is doing really great!! We went in and saw her and then we went down to Fort Lewis to get the kids and my Mom. They will be up here until at least Christmas Day...then we will all go back down to open presents. Anyways, once we finally got back and got to go to the hospital, Aili was doing great. They took out here drainage tubes, which means she doesn't have too much fluid in there. She still needs to get some off, but she is doing great. Also they started feedings yesterday!!!!!!!!! YEA!! She is only getting 1 cc an hour in a continuous feed through her nose (a feeding tube). Also ALL of her stats were great...her heart rate was in the 150's : ). So she is doing great.

We are about to go to the hospital now, so I will update later today!

Aili's Chest is CLOSED!

2008-12-18T10:05:00.000-08:00

So yesterday (12/17/08) they closed Aili's chest. They had originally told us at 9 am they might, but of course they didn't do it then. So when we showed up the nurse let us know that it looked like they would do it at 1 pm. So we hung out for a bit, asked the nurse questions, and went and ate some food. The nurse told us that all of Aili's levels were great, which was one reason they wanted to close her up. You could also see that the patch over her chest was getting close to leaking, which wouldn't be good because then bacteria could get in...so it was good they were going to close her up. The nurse did say that on her x-ray from that morning it showed the upper left part of the lung was partially collapsed. They said it was probably from extra fluid in there and once they went in, cleaned up, closed her and cleaned out her drainage tube she should be good. So after eating we went back to talk to anesthesia and then they took her back. As soon as they started getting all of her cords and stuff ready to roll her away she just started crying and crying. Since she is on the ventilator, you can't hear her cry, but you can see her trying her hardest. She was bright red and looked just like she was crying. We walked back with her as far as we could. She was only gone a little over an hour. She came back and was doing great. We stayed with her for a few minutes to make sure she was settled and doing well. Then we went to do some Christmas shopping with our friend Corrin, that we met at the hospital. She works there and we usually go talk to her every night before we leave. So we did some Christmas shopping and got something to eat. We went back later and she was still doing pretty good. Her heart rate had been pretty high though...like 170's-low 180's. So they were giving her extra fluid to help with that. They also gave her some extra morphine to see if that would help. I was tired so I fell asleep on the little couch thing and Clay played on the computer. I guess while I was sleeping her stats started beeping. The nurse jumped up and went over to her. Clay said that her O2 stat was really low...like 18%. So two of the nurses suctioned out some 'secretions' from her breathing tube/lungs. The nurse told Clay it was from the extra fluid. She was doing fine after that though. And the nurse kept frequently listening to her lungs to make sure it wasn't happening again.

Here are some pictures of her....the first are before she had her chest closed (12/16)...she was so awake and looking around : ). Then there are some after they closed it up (12/17).

2008-12-16T16:39:00.000-08:00

Aili is doing great today. She is off of the NO. She is still producing good urine, which is bringing down the swelling. They are looking at closing her chest tomorrow. All of her levels were good today. One of her levels that could indicate kidney problems, even went down!! So everything is looking great. Also the geneticist called me today to tell us that all of her tests came back normal...meaning that all of Aili's problems shouldn't be connected to anything genetic. She did say that we would probably go see them or someone at Madigan in about 6 months to check and see how she is growing.

Here is a picture of a Christmas Stocking that I made for the kids. I am starting the second one now and Clay is making one too!

Getting closer to chest closure!

2008-12-15T18:08:00.000-08:00

Clay & are I feeling a little under the weather today, so we didn't get to visit Aili. We think we ate something bad yesterday, but are waiting it out to make sure. Anyways, I did go in for about an hour, because I had to get more bottles. Aili was doing good. They put in one more tube to help drain some extra fluid. They found some extra fluid in her right side of the chest. After they put the tube in and checked it later, all of the fluid was gone. She is peeing out about twice what they are giving her, which is helping the extra fluid in her body get out. There had been NO blood in her urine today, which we are VERY happy about, since there had been some yesterday. All of her levels were great today. So everything is looking good. The nurse said they may close her chest tomorrow and one of the cardiac doctors told me in a day or two....so maybe Wednesday.

2008-12-14T16:18:00.000-08:00

Yesterday we came in and saw Aili for a little bit. She was doing good. Then we went home and saw Taryn, Connor & my Mom. We decorated the Christmas tree and ate dinner together. I hadn't seen the kids in 2 weeks, because they had been sick. Clay had gone down there a few times though. Anyways, we had a nice time and the kids enjoyed seeing us. Here are some pictures!

Aili is doing well today. She is a little more swollen today than yesterday. She also had some blood in her urine today. So they are watching those things. They want her to get the extra fluid off, but they also can't give her too much lasix (a med. to make her urinate more), because that can hurt her kidneys. So it's a fine line of what they can give her. So for now they are working on that. Otherwise she is doing great. They are weaning her off of Nitric Oxide and she is doing well with that.

Aili's off ECMO!!!

2008-12-12T18:28:00.000-08:00

OK I will start from yesterday (12/11/08). They did a trial off of ECMO in the morning. She did really well. It was about a 30 minute trial. In the middle of the day they did a second trial for about an hour, which wasn't as good. They weren't sure why, so they got an x-ray, to make sure she didn't have a collapsed lung, since her O2 stats weren't as good. The x-ray came back fine. So they did a third trial which was in between the two. Her stats for that one were in the 70's. Since it had been so back and forth that day they decided to keep her on the ECMO for the rest of the day and do another heart cath. today.

So today they did the heart cath. and found that her sano tube was a little narrowed at the end closest to the heart. So they fixed that and then did another trial. She did great so they took her off ECMO. She just got back to her room and her stats are in the 80's!!! We are really happy with the progress.

Here is Aili off of ECMO!!

Updates for 12/9 &12/10

2008-12-10T18:13:00.000-08:00

Update 12/9
They are going to try and wean her off the ECMO tonight/tomorrow. They are going to start at midnight and slowly work off of it. They will be doing an Echocardiogram in the morning. And depending on how she does when coming off of the ECMO they will do a Heart Catheterization. I will update when I know how that goes. Let's hope and pray that we can continue to move forward and get closer to coming home.

12/10
They slowly weaned her off of the ECMO this morning. She did pretty good and she stayed off of it for an hour. Her stats went down some, but with some medicines they went back to where they wanted them. They decided to leave her on ECMO for the rest of today and will most likely take her off of it tomorrow morning. They will wean her again tonight and then do a trial again in the morning.

Otherwise she did great today and we are just waiting for tomorrow...one day at a time!

Aili is out of surgery!

2008-12-10T18:12:00.000-08:00

Aili is out of surgery. She is doing pretty well. She had a little complication. I'm not sure if I will explain this right, because I'm not even sure if I understand it right. Her oxygen levels were too low after they finished with the main part of the surgery. Also her blood pressure wasn't where they wanted it to be. So they put her on a ECMO machine (http://en.wikipedia.org/wiki/Extracorporeal_membrane_oxygenation). They think her levels were too low because her lungs had too much oxygen before her surgery which resulted in her vessels constricting and causing low levels. So they have her on this machine to help increase her oxygen levels. She is doing really well on it and in general right now though. They have actually turned it down a lot and turned down her ventilator too. Hopefully she will only be on it a few days and her lungs will be fine. If she doesn't get better there may be another cause, and they will have to do other stuff to figure out what it is.
The doctor said that her heart is good and there was no problems there. So we are just waiting and seeing. Thanks for all of the prayers & positive thoughts!
If anyone wants to see pictures of her I can email them to you. But they are pretty scary, which is why they aren't posted for everyone to see.

Stuff from before Surgery

2008-12-10T17:53:00.000-08:00

Aili was on the CPAP for a day or two. I think they lowered the PGE again during that time and her stats improved a lot. She came off of the CPAP. Then her stats got too good, so she had to be put in what they call the 'dog house'. Which is like a plastic tent and they pump Nitrogen into it to lower the oxygen. By doing that they can keep her stats between 75-85%.

On the night she came in they did an x-ray. I'm not sure for what...I think it is just a normal thing. Anyways, on that they noticed that she is missing a set of ribs. It is her floating ones. We found out about this a few days later though, when the nurses were trading off and exchanging information. We also found out that she has a heart murmur, but that is normal for any baby with this heart problem. On the x-ray it also showed that she has a slight curve in her spine. It is right about where her heart is and from the looks of the x-ray it is caused by one of her vertebraes. That vertebrae is sort of shaped like a wedge that would hold a door open...so it causes her spine to curve. They told us that usually they just watch it as a child grows and they can either do nothing, if it isn't too bad/doesn't cause problems, they can put her in a brace or even surgery if it is bad enough.

Since they had done a few echocardiograms after her birth, they saw that the left side was larger than they originally thought. It was still small, but not as small as they thought. Because of this they weren't sure if they should do the single open heart surgery, where she would have two working ventricles or go the route of the three open heart surgeries that results in a single ventricle heart. To help them determine which would be better for Aili, they did a procedure called a Heart Catheterization. (http://en.wikipedia.org/wiki/Cardiac_catheterization). While they did this they accidentally poked a hole in one of her atriums. This really upset Clay and I. The doctors assured us that they kept her back there for longer and watched on ultrasound to make sure she wasn't bleeding and causing a fluid build up around the heart. They also did another echo about 4 hours later to double check for fluid around the heart. Everything checked out OK!

They used the information from that procedure to determine that it would still be best to go ahead with the three open heart surgeries. So we were scheduled for Monday December 8th in the morning. On Sunday the surgeon came in and explained what he planned to do, the benefits, risks, what to expect, etc. He was really thorough.

Aili's Birth Story

2008-12-10T16:39:00.000-08:00

We left our house at about 10 am on Monday morning (Nov. 24th) , so we could get to UW by noon. We stopped and got some burgers and then went on in. They checked us in at 12 and brought us back to our room. They must have had a lot of patients because things moved very slow!! I don't think I even got an IV until 2 or 3. So they got us in there and got my IV in and checked me to see what I was. I was only about a fingertip dilated and still pretty high. So they decided to give me misoprostol to ripen my cervix. They gave me my first dose at around 4, then checked me at 8-ish, almost 9 I think, and gave me a second dose. They couldn't give me a third dose because I was having too many contractions. That was at around 1 am, so I just tried to sleep. Some of the contractions were a little painful, but mostly like period cramping. In the morning Clay (my husband) left to go back home to get my Mom. They checked me in the morning at maybe 10-ish and I was at 4 cms with about a cm of cervix left (I'm guessing that is the thickness). I asked them around then if there was a wait for the anesthesiologist, because there was with Taryn and I wanted to make sure and get one...lol. With Taryn I got my epidural at about 6 cms and then they broke my water. So my nurse went to check. My contractions were becoming more painful, but I didn't think they were too bad. I mean I was breathing and focusing through them, but they weren't to the point of when I got my epi last time. The anesthesiologist came in and talked to me (he must have been a student, because he had to have another lady in the room for when they would actually do it). So they start getting things set up. By now my contractions are REALLY painful!!!! I was squirming and breathing really hard, etc. They get the lady in there so she can supervise him. He gives me some numbing medication where he will stick me and then begins to try and get the needle in the right spot. I'm telling them where I feel pain from the needle and they are adjusting it. Then the lady gets a call and just walks out...so he has to stop. None of us knew why she just walked out. By now Clay & my Mom have showed up. The nurse tried to go get her, but wasn't sure where she had gone. I was really having a hard time and even crying...although the crying was both from physical and mental pain. I was upset that Clay & my Mom had taken sooo long, plus I was starting to worry about Aili (nothing was wrong, just for the future). I think the anesthesiologist thought I was being a baby about it. He was still really nice, but last they had heard I was at 4 cms, and here I am moaning and crying through contractions. Clay told me to breath through them and I snapped at him like "I AM!!" My mom said right then she knew I had to be between 8-10 cms, because that's when women start yelling, etc. During a contraction I felt a little gush, but wasn't sure if it may have just been discharge. I told my nurse but she said it wasn't that wet down there. (I was sitting this whole time waiting for that lady to come back). A contraction or two later I felt some more. Finally the anesthesiologist went to look for her. When he left Clay asked if I wanted him to go yell at someone. I told him no and the nurse said she already did! LOL...she said it was inappropriate for that lady to just walk out. I had another contraction with LOTS more water and I felt like I needed to have a BM SOOOO bad!!! I told them that I either needed that or the baby was coming. Then all of a sudden I just started yelling, "She's coming!! I can't NOT push!!!!" SO they laid me down and called/pushed every emergency button they could. One because there was only my Mom, Clay, my nurse and now the two anesthesiologist in the room, so no doctors for me, but also none of the doctors for Aili!!! I think I freaked EVERYONE out! They rushed everyone in right away and I pushed Aili out in two contractions...with out any pain meds. I was of course screaming and yelling and crying and telling everyone I CAN'T do this. But turns out you have no choice!! LOL. Clay barely got to cut the cord...they were in such a rush I was saying let him cut it let him cut it...and he jumped in real fast to cut it. Aili cried when she came out, but was a little purple and didn't breath as much as she should have (no oxygen needed though), so her APGARS were 7 & 9. They cleaned her up and checked her out, then let me have a minute with her, then she was brought to the NICU.

She weighed 5 lbs 14 ozs and was 18.5 inches long.

She was later transported to Seattle Childrens and I was released 6 hours after delivery. I guess if you have no pain meds and because of our situation, they find it better for the whole family to be together ASAP.

Aili is doing pretty good. She was doing REALLY good at first with her O2 stats...like high 80's even in the low 90's at times. When a baby has a heart defect like this they look for it to be between 75 & 85%. She had one episode where it got lower on the transport over though. One of the medicines she is taking is called Prostaglandin, which keeps her PDA open in her heart to allow more mixture of the red and blue blood. There are some side effects though, like low O2 stats and crankiness. The nurse and doctors had said it feels like having the flu. So her O2 stats have been falling quite a bit. She had a nose canula yesterday, with room air. Her stats keep going down pretty often, so they lowered that medicine and it helped for a while. Then since she started doing it again...like shallow breathing and apnea...they have put her on a CPAP machine. The doctors did another Eco on her heart to check something (I'm not sure what it's called though). But if it is too narrow then they will go in through a vein in her leg and use like a balloon to make it bigger. So we are waiting on that to know what their plan is. Her first real surgery should be next week.

Sorry this is SO long and probably doesn't make much sense. SO i went from like 4 cms to 10 cms in an hour or two and we are both doing pretty good : )!

Aili's Story - The Beginning

2008-12-10T16:16:00.000-08:00

I found out I was pregnant on March 31st, 2008. Both my husband and I were very excited. We were also pretty nervous because I had a miscarriage in February. Things went great, we had our first appts. and had an early ultrasound to confirm that everything looked good. Everything progressed great and we were getting ready for our 20 week ultrasound. We went to it and got to see our beautiful baby moving around. We found out it was a girl. The ultrasound tech told us he was having trouble getting pictures of the left side of the heart. He did most of the pictures and then went and asked the doctor if he needed more. We tried again to get some more pictures and then we were allowed to leave. We never thought anything was wrong. We just thought she was in an awkward position and the tech had trouble getting the pictures he needed. I guess I should have figured out that 2 hours was a really long time for an ultrasound. Well the next day I got a phone call from my doctor telling me that they needed a more in depth ultrasound because they still didn't get the pictures they needed. He hadn't personally seen the report so he wasn't sure exactly why they wanted us to come in. We got an appt. pretty quickly. We were scheduled for an ultrasound and an echocardiogram (a more detailed ultrasound of the heart). At this appt. we found out that our new daughter had 3 problems with her heart. We were told she had Transposition of the Greater Arteries, Hypoplastic Left Heart Syndrome, and a Ventricle Septal Defect.

http://www.webdeb.com/lauren/tga.htm
http://www.cincinnatichildrens.org/health/heart-encyclopedia/anomalies/transposition.htm
http://en.wikipedia.org/wiki/Ventricular_septal_defect
http://en.wikipedia.org/wiki/Hypoplastic_left_heart_syndrome

We were very upset about this, of course. We talked with a lot of doctors that day, who helped explain what it all meant and what would probably happen. At first they told us that yes the left side of the heart was small, but they didn't think it was 'too' small and that hopefully they would just be able to switch the arteries and fix the hole in her heart. This would mean most likely only one open heart surgery. The hospital that we go to doesn't have doctors that do open heart surgeries though, so we started having some of our care at Seattle Children's Hospital. We went there for an echocardiogram, so that they could see the anatomy for themselves. While at that appt. we were told that the left side was in fact too small. This meant that instead of one open heart surgery should would now have 3. The first one occurs when the baby is around a week old, the second is done at 3-6 months of age and the last one is done around 3-5 years old. The first one is called the Norwood procedure, the second one if called the Glenn and the last one is called the Fontan.

We continued on with my pregnancy just like any normal one for the most part. I wasn't restricted or anything. We just had more appts. I had to go in for a growth ultrasound every 4 weeks. Near the end of my pregnancy I started having NST's (Non-stress tests), which is basically where they monitor you and the baby to make sure they baby isn't under stress. Lots of women have these and for lots of different reasons...some for the mother and some for the baby. In the beginning of November we met with one of the surgeons at Children's, and he explained what they would do and how they would do it. I also saw an OBGYN at The University of Washington Medical Center. We decided that I would deliver there, by being induced so that they baby would be closer to the Children's Hospital. Everything went great for the rest of my pregnancy and I was scheduled to be induced on November 24th.