Sunday, July 27, 2008

The 4 of us

Tanner--
is BUSY. Between work and family there really isn't much time for much else. He is loving work, fortunatley staying busy in a field that hasn't been too great for some others in his line of work lately. I would have to say that his most favorite thing to do is rock and sing to his little girl...She has definatley stolen his heart big time. He calls her his Belarina and she is in love with him.
Me--
hmmm...where to start? I'm not sure most of the time what exactly it is that completley fills my days and keeps me so busy, but there's a lot of it whatever it is. THere's a lot of changing thrown-up-on clothes, changing diapers, giving meds, checking NG tube placement, filling bags of milk, pump feeds, rocking, puzzles, car crashing (Benson's cars), chasing, cleaning up messes..you get the point. Life is crazy and fun with a 2 and a half year old and a 5 month old with a CHD. I had 12 apointments in the last two weeks... really, 12. I even threw one for Benson in there that turned out to throw us for a big loop...I'll get to that in his update though.. I really am just trying to take advantage of this time at home and hold and love on my kids as much as I can before the world turns upside down again. I try to not think about what is coming up for my Bela... It's been especially hard latley because she has been doing sooo good and I don't want to see that end and feel back at square one again. I am learning so much latley, it's amazing what children can teach you. Benson and Bela teach me so much.. Isn't it supposed to be the other way around? All I know is I am blessed.. I admit that sometimes I get down or frusterated. I had a particularly 'down and frusterated' moment the other night. I went into Bela's room before I went to bed to make sure everything looked ok. I check her breathing, her sats, her milk, her pump, her color...all those things I wish I didn't have to watch so closely.. I realized her NG was out, it was the third time that day. SOmtiems the tube stays in for 3 days straight without coming out and sometimes it's a few times a day.. I really hate those days. So anyway, she was sleeping so peacefully and I did NOT want to shove that tube down her throat and make her gag and scream. At that moment I wished so bad that I could just let my sweet baby be just that, a sweet, normal baby that I could just let sleep, tube free. She loves to have that tube out...you can tell that she feels so much relief when it's out. But...she needed her milk...So I got all prepped to do it. Tried twice and for some reason it didn't just slide down too easily. The third time I got it down okay and taped her up.. By this time she was trying to catch her breath, gagging and screaming, so I picked her up and just held her and cried with her and told her I was so sorry... It's the little moments like that that you just wish it all went away for her sake. Most of the time I see Bela's anatomy as special and unique, a gift from my Heavenly Father.. But there are times when I wonder why. I can't wait until she is stronger, when I can take her out and show her off. When she dosn't seem so fragile, when she can do more on her own... When she can enjoy life and when the littlest things don't compleletley stress her out and wear her little body out. I was able to get in contact with the families of two girls with HLHS and Turners, one is 2 and one is 9 and it has really given me a lot of hope. They are both beautiful and happy, but most importantly, they are both survivors and I was so happy to find them. It has been so uplifting to have associations with so many amazing people that are going through similar things. Also something that has REALLY made my week this week was receiving the most special and beautiful gift...Eden's mommy Keisa gave me her milk that she so lovingly pumped for her little girl. I can't even begin to explain how happy I was. I felt like I won the lottery. I wanted sooo badly to give Bela my milk through her next surgery, but I was starting to lose my supply. I was still trying to pump as much as I could, but it just wasn't happening as much as it needed to to keep my supply up. Just as I was not able to keep up anymore, I was able to get this milk. Everytime I get a bag otu of the freezer to defrost to give to Bela I am filled with so much appreciation to Keisa for that gift. I know that Eden is looking out for her little friend...
Benson--
He is the best. He'll never know how much his sweet little self helps me lots of days. He's OBSESSED with cars (the movie and all the little cars from it) and Diego. He has also learned to take off his diaper and I'm not sure what to do about his new thing-- taking it off during his nap. He did go potty in the toilet for the first time yesterday...why is that so hard to do? I don't get it....
So, about his doctor visit. Turns out Benson needs surgery...lovely huh?! When it rains it pours! Since he is only 2, he won't get mad at me for talking about it... One of his testicles never fully descended so he has to have surgery to bring it down all the way so it will not affect his ability to have children. The dr. said the word 'infertile', and I said 'do whatever the heck it takes, just don't say that word about another one of my children!' He also has a hernia, so he'll be going in on August 4th for his procedure. It isn't anything compared to Bela's, but it will be a huge deal for him and a traumatic experience. He has to get lots of anesthetics and two incisions. My poor boy... It should be a fairly easy recovery though.. We told them it needs to be before August 12th, because we had another surgery for our daugther, and luckily they were able to get us in. Which leads me to....
Bela--
She will be cathed probably Aug. 12th or 13th. Like I said before, we don't know if we'll stay in between or not, but it looks like surgery might be sooner than Sept 1st. We'll see. Only Bela can tell us when it's time. Her apt. on Thursday at St. Joes was a little long and stressful, but everything still looks good. She finally hit the big 1-0!!! YEAH for a double digit weight!! She had to get blood work drawn...NOT a fun experience. I'm so on the verge of tears these days, and they just flow when hers start to flow. There are so many times when all that is going through my mind is, 'is this really good for her?' With so many apointments, sometimes I wonder... She is doing better than she ever has and it has been a wonderful little break from the up and down rollercoaster. Figuring out that she was aspirating has really helped her. She is sweet, tiny, and oh so cute.. She loves to eat her hands...constantly.

Here's some pictures taken today with my parents... My dad came do say goodbye.
My mom and dad are going back to Brazil for another church assignment... my Dad is going to be the legal counsel for all of brazil for the church. My Dad leaves in about a week, so this was goodbye for awhile and it was hard. I am definatley close to my mom and dad, and have leaned on them a lot during this. My mom is staying through Bela's next surgery and then she'll join him. It isn't very good timing, but we know that the Lord knows best!











26 comments:

S & K said...

Love, love, love all the cute pictures. I'm so sad that you had to tell your Dad goodbye already, that seemed to fly by. I don't know what else to say, other than you are so strong, not just being able to handle all that’s on your plate but to be able to share it with all of us that care so deeply about you guys. I love your blog it’s so honest and touches my heart every time I read it. You are something else Avery. The best news is the 10 lbs. mark---you didn't tell me that one the other day, probable to protect your hearing from a giant WAHOOOOOO! I'm unbelievable proud of her for hitting that! She's on her way to becoming a little chubby and I know it!!!!!! She needs to follow big brother and get some of those cheeks he had as a little guy! Speaking of the little guy---the surgery for him still breaks my heart. And that last picture of him is TOO DIE FOR CUTE, he seriously looks like he's 6 or older. That cannot happen--- our boys getting OLD!!! Watch out ladies! :) Talk to you soon and I love ya! --sorry for the novel most of this couldn't be retained until a phone call!! ;)

The Silly Nilly Gass Fam said...

Oh Avery, I wish I could lift some of the burden for you and your family. I'm so sorry. You and your husband are working so hard and must be so tired. I know the Lord sees and is witness to the hours and tears and dedication and we have to trust he will make it all worth it. For now I can only say that I just can not imagine how you do it. I hope little Benson does well. Bless your family.

Molly Wright said...

Avery-
Mark is scheduled for a cath on the 12th too! Beth said she thought we might be there together. We will see you there!
Molly Wright (Mark's mom)

AL and ALI said...

This was such a great post Avery. Thanks for sharing all these thoughts. She looks bigger in these pictures! That is so great!!! Talk to you soon.

Kimmie said...

A good update on all of you, Avery! It was fun to see pics of everyone. Tell your Mom and Dad hello! You are doing great! Bela and Benson are absolute dolls!
Kimmie

4starmom said...

Thank you for reminding me to appreciate the little things I take for granted. Your family is in my prayers.

Matt and Jennae Porter said...

I love the last picture of Bela and her grandpa. I can't believe she's at 10 pounds... that means she's almost doubled her birth weight, right? Thats so great! She is looking more and more precious each time you post new pictures. But now poor Benson too... oh man. What a year you guys are having. We love you.

Andrea said...

Cute cute pictures!! You continue to amaze me, Avery. You are incredibly strong, as is your little family. I check your blog often for updates, so glad little Bela is growing. She is so precious. You are such an example to me. Hang in there! Tell your parents hi.

Michele said...

I relate to everything you have said in your post! The feeding tube thing is a blessing and a curse! Wouldn't we love our babies to be tube free! Maybe some day. About your son's surgery, my son had the same thing done this past December. It will be nothing compared to what you have gone through with Bela. It was not to bad and he was his usual self after a couple of days. Good luck with everything!

Rich and Miriam said...

What a great family you have! Let us know if we can do anything to help during Benson's surgery.

Cute, cute pictures!

Likes Chocolate said...

Fantastic photos!!!!

Erin said...

Wow friend it has been a few days since I checked in and it seems lots has happened...including a new blog look:) You still never cease to amaze me...if there ever was a person to describe hero it would be you! You have done the best for your kiddos and through all your experiences have made all of us better people as well. Sure wish I could make life easier for you, and will do all I can, but realize that this life is for us to gain experiences that will be for our good. Still not totally sure how all that works but know that the Lord is forever looking out for us. You are doing all the Lord asks I am sure and I believe He is so happy with all that you do for His children. They truly could not have better parents to care for them during this trying time.
So glad to hear Bela is hanging in there strong...you always knew she was a fighter. The pics of her could not be cuter. She is really starting to fill out and be such a beautiful little girl. Way to go on 10 pounds I bet that just makes your day!!!
Sorry to hear about Benson...poor guy. But better to have things fixed now then to have problems later on. We will add him to our prayers. Hopefully with him being so young the memory of the whole event will not last. He is such a handsome little guy and so sweet...we could sure use his personality over here!
Well hang in there friend. You are amazing and I admire you more than you know. I will stop by this week I promise...things have just been crazy the last few weeks (ok I know I have little to say about crazy). Take care and I will see you soon.

Millie said...

Hello,
I'm new to your page, but wanted to say hi. My name is Millie and my son Colin just turned 4 years old and has HLHS. He just completed his Fontan. Your family is so beautiful. Bela and Benson are adorable! You are not alone in this journey, I have felt some of the same emotions. Especially the NG tube thing. I always hated changing them. My son has a "button" now. You will be in my prayers,
Millie and Colin-HLHS

Lindsay Brummer said...

Bela looks so great in those pictures; you all do. Jeff wanted me to tell you that he had a hernia surgery when he was Benson's age too and his parents said he wasn't bothered by it that much.
we think of you guys often and pray for your beautiful little girl.

Brittany & Barry said...

That little Bela is such a cutie! She definitely has the Woff look. Love you guys.

Sally said...

Honestly...can't handle it...you are the strongest person ever! What can I do!?! Not much and thats what kills me! Please come over again soon..sweet little family you are in our prayers...

Dana said...

It was so great to talk to you the other day - I miss our daily chats from the good ole days!!! Thanks for the update - you guys sure have a lot coming up, but you are such amaing parents! Bela is so beautiful, and Benson is getting so grown up. Just curious, where is Benson's hernia? Jordan had his double hernia repair back in AZ. Hope all goes smoothly with his surgery - I'm sure it will. Keep us updated. I'm sorry you had a say goodbye to your dad - what a hard thing to do. I'll keep you in my prayers. Lots of love to the Milne family - we miss you guys.

Debi said...

Hi Avery,

I have been following your blog for the past couple months. I also had a daughter with both HLHS and Turner Syndrome who passed away when she was 9 months old, Liliana. These girls truely are gifts from God! Liliana touched more people's lives in her short time here than I ever will. I hope my entry does not bring you down. Your little Bela looks wonderful and sounds like she is doing great! I also know of two other families that have girls with both conditions. One girl is 1 year old and the other is 6. They are also both survivors. In your last entry you stated that you met some families with a 9 year old and a 2 year old. I am wondering if you could share their contact information with me. We are now pregnant again and are very excited but also very nervous. I would love to touch base with these families to see if they have since had other children and how their pregnancies went. I will continue to follow your journey and keep Bela in my prayers. She will be another success story for other families in similar situations.
Debi debisherman@yahoo.com

Dallas and Krista said...

Oh Bela looks so pretty! Wow- I can't believe about Benson... I am sure he will do great though. So I was thinking i could visit for lunch sometime soon? Let me know what you think!

Amanda Bowen said...

hey, so glad that everything is starting to be even-kill as much as possible for you guys. I was thinkg about everything that you have been through and was wondering if you needed any help with handleing your med bills. I have my degree in it and I know what they can do to a person. Trying to deal with them alone is enough. If you do need help with codes or procedures let me know. so ya. You will get through August! And you are doing awesome!!!

Amber said...

You are sooooo not alone...and you are amazing! My comfort (in doing the exact same check each night)is knowing that there are others of us out there...doing the exact same thing! We have a completely different "defect" but I've learned that a broken heart, is a ....broken heart. You are in my prayers.

Doreen said...

So glad little Bela is gaining some weight! Sorry Benson is going to have to have surgery now. At least they caught it, hopefully he'll be okay! Also, Avery, could you email me please? I'd like to ask you a question. :o) doreen1999 at yahoo dot com

Deborah Breinholt said...

you guys have come so far and it so amazing to see how well your little girl is doing. it seems that your family is a true example of prayer and faith. i hope everything keeps going in your favor and that your troubles get less and less. you are in our prayers!

Maren said...

I just wanted to say that I was so impressed by your testimony today. I know I already told you but, your little girl just touches my heart. I know it's truly and miracle and blessing that she is here to put smiles on all our faces. I hope that everything goes well and your pics of you and your family are so cute.
maren bloomer

camillian said...

You're testimony was so sweet today! It feels like it's been a while since I've seen or talked to you... I love all the cute pictures. Bela is getting so bit and she really look good too!

emcghee said...

Ave, Bela looks great. She is looking older. Thanks for posting wonderful blogs.