Thursday, January 29, 2009

Updates

Nurdin and Zumrat
I have been to the hospital to visit them every day since surgery, except Sunday. Sometimes the visits are short, but they are always rewarding. I have come to really love these ladies, and of course the sweet baby. Nurdin is doing great! Today he had no chest tubes and only .25 L of oxygen. His mom is able to hold him now and he is nursing again. They are thinking he will be discharged this weekend sometime. Yay God!

Me and Zumrat

Me and Nurdin (4 days post-op)

Gulnaz (the interpreter), Zumrat and Nurdin one week post-op

Hearts of Hope
We had our very first board meeting last Saturday. We had a delicious breakfast and got some things down on the calendar and shared ideas about future speakers. We also had our monthly support group meeting on Tuesday. We had the most beautiful cupcakes in honor of CHD Awareness Week coming up in February. We also had a marriage and family therapist specializing in families with special needs children who spoke about the impact having a medically fragile child can have on the family, and some strategies on how to deal with it.


Kids
We got Drew signed up for T-ball, but it took a few tries! The first time we were in the wrong league and they are very serious about that! We had to have his birth certificate, a photo ID and three bills as proof of residency to sign him up. You wouldn't want the teams stacked in T-ball. ;) We won't find out what team he's on or when practices/games are until the end of February. We also signed Ava up for her very first dance class at the same church where she attends preschool. It was so adorable to watch her at "tap-jazz" that I posted the video below.

This isn't what Ava wore to dance class, but wouldn't it be funny if she did? It is what she wanted to wear to school that day.

I'm leaving tomorrow to head to So Cal for a good friend's baby shower. I am going alone and am actually looking forward to the break that it will provide. I have had two weeks full of meetings and appointments and am ready to read a book on the plane, relax with my friends and enjoy two days of only being responsible for myself. I just hope Dan won't be too overworked without me!

Ava's First Dance Class

video

This is a long video and is mostly intended for the grandparents. But it IS super cute!

On Monday I brought Ava to her first dance class. For about the first 45 minutes she didn't want to participate and just watched the class. But at the end she got really into it! She loved wearing her pink leotard and tutu and when we were in the car on the way there she said "Mommy, we forgot my crown!" So cute! I can't wait til next week!

Sunday, January 25, 2009

Christmas All Year

First, an update on Noordin:
He's been doing very well. Dr. M closed his chest on Friday. I was able to see him yesterday and he looks much pinker now! He was extubated this morning and is doing well so far. Mom has been able to get some rest and I've enjoyed visiting with her every day. I don't know if I'm going to make it over there today though, but told her I'd be there tomorrow.

Christmas All Year
Today we're excited to participate as a family in something my friend Kristina is organizing. We've been noticing that there are many opportunities to serve around Christmas time, but after the holiday season people are less inclined to participate. The need is still there though, so Kristina came up with Christmas All Year. Each month on the 25th we are going to do something to serve the community. It won't necessarily always be the same thing, but this month we are going to continue with what she started in November and bring food to the homeless in downtown Sacramento. We will meet at her house and make and assemble 200 lunches, then deliver them to those who need them. I think this is a great way to continue to care for those in our community and thought some of you reading this might be inspired to do something similar.

Friday, January 23, 2009

Zumrat and Noordin


The past few days I have had the privilege and honor of walking through heart surgery with a mother and her 9 month old baby. Their story is incredible. The number of people who came together so that this could happen is amazing. You see, this little family is from Krygyzstan, and they don't do this type of surgery there. This sweet little baby would have only survived another six months if he didn't get this life-saving surgery. I met Zumrat on Wednesday when Valerie and I visited the hospital. It was a long day for them, they had pre-op and a tour of the unit and had to check into the Sharing Place. We had to talk through an interpreter because she doesn't speak any English. She was so appreciative to have us there and of the few things we are providing (meals, phone cards, gift bag...). We told her about our children and their surgeries and she asked us some questions. And when it was time to leave we hugged and she said "I will remember this and appreciate you forever." It was at that moment that I remembered what is important and what isn't. When I decided that I could change my schedule for Thursday so that I could wait with them during Noordin's surgery.

And I am truly puzzled. My own son has undergone three separate open-heart surgeries. Shouldn't I have learned this lesson by now? Why do I have to keep learning it? I am a slow learner I guess.

So yesterday I arrived at the hospital at 11:00 and waited with them until surgery was over. Zumrat was worried, but noticeably calm. I asked how she had been doing. She said that she had cried a lot when they took Noordin away (always the hardest part) but that she felt peaceful because we were all there waiting with her. She asked us all to write a note in the little notebook I had given her. I gave her magazines so she could look at the pictures, and Valerie brought sandwiches for everyone. Finally, Dr. M came in to tell us that surgery was over. He said the procedure went well and that Noordin's heart looked great. But there was one problem.

You could feel everyone's heart in the room sink. His lungs were having trouble adjusting to the new blood flow and they had to leave his chest open. He would also have to stay on the ventilator for 3-4 days instead of coming off of it later that evening, as they had anticipated. As a heart mom myself, I know that this is not that uncommon, it happened to Drew and he is perfectly fine now. But I also know that anything that doesn't go as expected during your baby's heart surgery is terrifying. And Zumrat was very scared and crying. We hugged her and tried to share some of our experiences with her. She got to go in and see Noordin for a short while (they still had to get him stabilized in the room) and then came out with us again. She was understandably upset and so we took her for a walk.

As we were getting ready to leave we shared some more hugs and she again expressed her gratitude to us. But I feel truly blessed to have shared this experience with her, to witness her strength and courage traveling so far from home without her husband and daughter, in a country where she does not speak the language, her dedication to do anything that needs to be done to save her baby. What an honor.

Tuesday, January 20, 2009

A Historic Day

Today was a historic day for our country. It's all over the news, all over facebook. I can't escape it! And even though I don't usually discuss politics, mostly because I don't like to argue, I have to admit that I am not as excited as everyone else. Or at least, I haven't been up to this point. But watching the inauguration this morning was pretty amazing. How cool is it that we live in a country where the transfer of power has been peaceful 44 times in a row? The image of President Bush and President-elect Obama emerging from the White House together was a powerful one. And even though I didn't vote for Obama, I am rooting for him and for our country. I hope that the change, the hope, that everyone is talking about takes hold.

But today was also a historic day in our house.

Today I registered Drew for kindergarten. This is a huge milestone in his life. Other mothers may be tearful because they will miss the baby stages, or because the time flies and their kids grow up so fast. Or they may be excited to have the break that kindergarten provides. I feel those things too. But I also feel that my time has gone by too fast. It was taken up with hospitalizations, and doctor appointments, surgeries and catheterizations, medications and therapies. I also feel triumphant. We have made it to 5. In the world of heart defects, this represents yet another milestone. The survival rate increases once a child reaches the age of 5. And here we are! We beat the odds, we made it. And the future is looking incredibly...normal. That is change I can believe in.

Saturday, January 17, 2009

Too Busy?

Phew! I am exhausted! We are really back into the swing of things, now that all our commitments have resumed after the holiday break. You should see what my calendar looks like! It's a little bit crazy. Here's our weekly schedule:

Monday: preschool for Drew, gravity class at the gym for me and Ava. I usually make a second trip to the gym during Ava's nap and bring Drew so I can run.
Tuesday: Mom Connection, grocery day
Wednesday: preschool for Drew, Community Bible Study for me and Ava. Gym in the afternoon.
Thursday: Gravity class then running at the gym, with both kids. Prepare for life group at our house in the evening
Friday: preschool for both kids, alone time for me and Dan

And that's just the basics. Throw in there a couple of meetings for various groups, or snack day for Drew's school, or hanging out with friends and it's a good thing I have my calendar to keep track of everything. This particular weekend I am busy from 10 am today until 8 pm tomorrow night. But, before you tell me I'm crazy and I need to cut back, I enjoy everything that we do. Well, except maybe all that gym time, but that's for training purposes and I do want to be able to run in the Shamrock & Roll Half Marathon. So I wouldn't even know what could be cut out.

I recently became a co-leader of our weekly life group and I am excited about the opportunity. I know it sounds like I'm adding to my list of commitments, but we already hosted it and attended it, and I really don't think it will be a whole lot of additional preparation outside of group. I am also co-chair of Hearts of Hope and we are trying to put together a planning meeting for the new year. In addition to that I just joined the women's ministry at church and am planning an event for Valentine's Day, basically expanding on our yearly tradition. I think after February things will be a little less crazy.

But enough about that. The kids have been hilarious lately! Drew is growing up to be such a little person. I guess it makes sense, since he will be 5 next month. He says things that sound so much like an adult, it surprises us. He just understands more about the world around him. He can play more real games now (Go Fish is a favorite) and he's just more fun to be with. He is excited for kindergarten and always asks where his big school is when we're driving around the neighborhood. He is also a jokester, making all of us laugh at dinner time! I was having lunch with a friend the other day and she said she couldn't remember what medications Drew was on. I was happy to tell her none! But it was a good reminder of how different things are now. When Drew came home from the hospital at ten weeks old, he was on 9 medications and fed through a tube. At one point he had four weekly therapies (OT, PT, speech, infant development). And look at him now, five years later! No medications, no therapies, no IEP! I wish I could have known how things would turn out when I was so consumed with worry and fear when he was first diagnosed with DiGeorge syndrome. He is a little miracle man. Who wants to play t-ball.

Ava has also been pretty funny lately. She just has something to say all the time! I love hearing her little voice (unless she is shrieking). She is really into babies right now and has started carrying hers tucked inside her shirt, telling me she has a baby in her tummy. The other day she even ate lunch that way! She has learned how to do the splits and is always asking about ballet, so we are going to try to find a class for her.

Ava eating lunch with her baby, complete with cheesy smile

My last tidbit of news is that I am still continuing the fight with the insurance company to pay the hospital. Yesterday I called Health Net for the fifth time since surgery. I was all ready to let the guy have it, but I am just too nice. I started off strong though. :) Anyway, we went line by line over the items which have now been sent to collections even though I have been diligent in trying to get everything paid. There were still five claims that were incorrectly billed to us that should have been paid by insurance. Those will have to be reprocessed, something that normally takes 30-45 business days. Isn't that appalling? That is nine weeks I am supposed to wait? Since this is my FIFTH time calling about the same issue he will mark it as "accelerated" and it should only take 5-10 business days. Don't you think they could have marked it accelerated on the third or fourth time? Anyway, after we did all that he told me how much was considered "member responsibility." I asked him if it looked to him like we met our out of pocket maximum. He said yes, we had already met it. So I asked if we have met our maximum, why would I have anymore member responsibility? He was silent for a long time and then said that Health Net should pay 100% on those claims. But they will have to investigate and guess what, it takes 5-10 business days.

Taking their bedtime ride on Daddy

Monday, January 12, 2009

Hearts

I'm feeling a little mushy today.

I've been over on the Hearts of Hope blog. There is a contest to win a lovely bracelet and to enter you just have to share what living with a child with CHD is like. Each entry is more beautiful than the next. People sharing their stories of hope and perseverance. How they learned to live life to the fullest, to appreciate the little things, to have an attitude of gratitude. It's just inspiring.

Then I read the next entry down. Dr. Mainwaring is bringing a little boy from the Republic of Kyrgyz to Sacramento so he can perform lifesaving heart surgery free of charge. Our group is going to help support the family through their stay here. As I read the comments from our heart families I got tears in my eyes and started to cry. I am so impressed by everyone's willingness to help a family they have never met. All we know about them is that we share a common bond because our children have broken hearts and we desperately want them to be well. I just feel absolutely honored to be among such special people, who in the midst of their own struggles feel compelled to reach out and help someone else.

Friday, January 9, 2009

Bandit is Home!

I am so, so excited that my Bandit is home!

When I got back from picking the kids up from preschool, he was waiting for us in the backyard! Dan says a guy called him and said he thought he had our dog. When he got home from work last night he had three dogs instead of two in his backyard. He brought Bandit to his vet to have him scanned for a chip this morning and it was one of the places we had our flier. So he called Dan and brought him home! And he's another sweet pet lover who would not take our reward money!

I don't know where Bandit was until last night and I so wish he could tell me! But I am so happy to have our whole family reunited again. I really was starting to think we wouldn't find him. Both dogs have their tags on now and Dan is at the hardware store right now so that our fence will be doggie-escape proof!

Monday, January 5, 2009

Back to School

Today was Drew's first day back at school after two weeks of vacation. As much as I am looking forward to having some routine back in our lives, I did enjoy the many days of staying in our jammies all day long and just playing with toys at home. This morning was made a little more difficult since Ava is sick again and got me sick as well. I am fighting it though! I am using my tried and true method of zicam every four hours plus lots of fluids! Can you believe my kids didn't get sick at all when they were going to school, the gym, mom connection, and with other kids all the time, but instead got sick while we were on vacation with limited germ accessibility?

Since our dogs ran away on New Years Eve, each day has had a lot of "dog related business" to attend to. We've been to all the shelters in our area, placed an ad on craigslist, checked craigslist for found dogs multiple times a day, check the shelters websites multiple times a day, made and posted hundreds of fliers, visited a handful of local vet offices, made posts at pet stores, etc. Still no leads on Bandit. I am sad. I think with each day he is missing the less likely it is we will find him. I hope someone found him and just wanted to keep him. I would hate to think he's still out there wandering, or worse. Bibby has been back since the 2nd. A very nice lady found her stuck in their fence trying to get into their backyard on New Years Eve. Bibby was probably only lost for a half hour or so before she was found again. The kids miss Bandit and ask where he is, but they don't seem very sad, which I am grateful for.

We don't have a whole lot else going on. It's been cold and rainy here. I have decided to train for another half-marathon. This one is in March so my training starts today! I have to get to the gym and run four miles no matter what my head cold is telling me. This race should be fun, I think my dad is going to come up and run with me. Also, I received lots of cold weather running gear for Christmas, so I guess I have no excuses about it being too cold.

LOST DOG-Bandit

Thursday, January 1, 2009

Happy New Year!

I hope everyone had a happy and safe New Year's Eve! We did! It started off with taking Drew to the doctor though. He's had a very mild cold for about a week, but when we got back from Grandma's house it seemed to get worse overnight. So luckily our doctor had a few hours of clinic on Wednesday and we got him in there. He has an ear infection and she gave us some antibiotics to clear it up. We ended up having some friends over and someone brought their Wii so we played games until about 11:55, then watched the ball drop, then played games some more. It was a fun evening!

I thought I would share some of my reflections on 2008 and things we're looking forward to in 2009:

2008
We started off 2008 with a canceled heart cath, then a completed heart cath at UCSF
It was a year full of emotions, appointments and many conversations with doctors
We celebrated Drew's 4th birthday and his last two baby teeth came in
We celebrated my 30th birthday
I became the co-chair of Hearts of Hope
We brightened some faces at UCDMC with our Valentine's Tradition
welcomed my best friend's first child into the world, Ashley Elizabeth Pence
I had my thesis published
We got a new car, couches and carpet
We spent many hours on the phone with the insurance company
We enjoyed lots of warm days at the park
We dropped one specialist (endocrine)
Our garage was broken into
Our baby girl turned 2!
Drew had his third open-heart surgery, a one and a half ventricle repair
We spent six weeks at Stanford, including the whole month of June
I had a reunion with my college girlfriends in Napa
Dan completed two centuries
Drew learned to swim
We celebrated Dan's 30th birthday
We went on our first cruise together
We celebrated our 7th anniversary
We participated in our 5th Heart Walk
I ran in my second half-marathon
Drew stopped taking any medication!
We had a fun Halloween
We had a great Thanksgiving
We made our first trip to Disneyland and it was awesome!
We hosted our 8th annual holiday party
We had a wonderful, relaxing Christmas
Our dogs ran away
Other than surgery, Drew didn't have a hospitalization this year

In 2009 I am looking forward to:
Finding the dogs
A year of no surgeries
Drew starting kindergarten
Ava going to preschool twice a week
Everyone's birthdays
Some more running, cycling or triathlons
More home improvements-maybe some paint this year?
A year full of fun and family time!