Monday, April 28, 2008

New responsibilities

Avery has mentioned all week that she needs to post but she hasn't had time to eat or sleep, let alone post. We love having Bela home, but this time it has brought on an unknown world of worry and responsibilities. We have to administer Bela's anti-biotic three times a day and it usually takes 40-50 minutes depending on who is the administer:) We were told by one of our home health nurses the other day, "the doctors must have a lot of confidence in you guys, because in 17 years of nursing, I have never seen a family entrusted to administer the anti-biotics at home." We didn't completely understand the severity of our responsibilites until the nurse put it into perspective. Usually babies stay in the hospital the entire time they are on their antibiotics and for us that would have meant another six weeks. I would go to medical school tomorrow, if it meant we could have our Bela home with us. So that you understand a glimpse of the routine, at night, we usually start at 8:30 or whenever we can get Benson down. We start with the multi-vitamin, lasix, something else, and aspirin in the NG tube. Avery will laugh when she reads this in the morning, because I just do what I am told and really don't know the names of the stuff. After the meds, we get all of the fortified milk prepared for the entire night and set up the milk pump. I am sure there is a great name for the milk pump, what it is I am not aware. Then the feeds begin for the entire night. This can take anywhere from 15 to 30 minutes, again depending on who is doing it. We then will always prepare the anti-biotic after we get all the meds and feeds going, because setting up the anti-biotic pumps at 1:30 am is not fun. I am getting anxiety just thinking about the fact that tonight is my night to get up and do the meds which means I will be up from 1:30 to 2:30 administering and then again at 4:00 to add more milk to her pump. I sweat the entire time I administer the meds!

There is probably much more that goes on during the day that I don't know about and I will let Avery fill in the blanks at another time. Avery will attest that Bela absolutely loves her daddy. She will fuss with almost anyone but when daddy is holding her. When I am home I can hold her for hours at a time and I pretty much tear up every time I sit and stare in her eyes. She is so amazing and we are so lucky to have her.

She is still not gaining weight and that really worries us. The longest she can wait for the next surgery is four months from now and at the pace she is on, she will not be as big and strong as the doctors would like. I know Avery worries about Bela performing to the doctor's expectations and so far she is under performing. I don't let that bother me because Bela does fit within any medical senario or growth chart. I know that if the plan is for Bela to make it through the second surgery, it doesn't matter if she doesn't gain another ounce, because she will make it.

Sometimes it seems that life is pretty normal but it is because we have an incredible support system and there is no question we have been carried through this. The other day, we accidentally pull out the NG tube that runs through her nose to her stomach. We were stressed about how we would get it back in, and thought that we should call someone we know who is a nurse. The night passed so fast and before we knew it, it was time to start her feeds. It was too late to call someone so Avery said that I had to do it. We were shown one time how to insert it through her nose and then check for the placement in her stomach in the hospital but never expected to have to do it on our own. I was so nervous I thought I was going to throw up but knew that we had to get it in to start her feeds. I said a silent prayer and asked that I would be calm and it would go down the right tube and make it to her stomach. It was incredible how at that moment I was overcome with total silence and my hand stopped shaking so I could put it right in. When I thought about it later that night, I recalled feeling the prayers of everyone that prays for Bela and our family at that exact moment. Our burdens have been made light through all of this. Thank you for your constant prayers in our behalf. I spoke with someone the other day that I have done business with and he mentioned that he thought Bela was in the clear and wondered what the future looked like for her. I reaffirmed to him that Bela is definately not in the clear and that we have a major surgery to undergo in a few months. I only say this because Bela needs every prayer and even if you don't pray for yourself, we ask that you pray for Bela. I am amazed at how many hearts she has softened and how many pray in her behalf.

We thank you all with all our hearts.

18 comments:

S & K said...

You guys just amaze me, and keep up the great work. And just know we are constantly praying for all of you! We'll be praying particularly for some poundage on that little one! :)

ashley said...

wow. you guys really are amazing. my heart goes out to you. i still can't look at your blog and not get teary eyed.
praying for an easy night for you all and many more to come.

The Joslyn Family said...

Wow, you guys are amazing. Bela is so lucky to have been born into such a loving family. We will continue to pray for your family and sweet little Bela.

AL and ALI said...

Thanks for the update, Avery please call me if I can do anything - run to the store, take Benson, let you take a nap.

Branton Family said...

I can't imagine the stress you guys are under. Bella and Benson are truly blessed with wonderful, loving parents. Keep up the good work. We are thinking of you! Amy

The Staffieri Family said...

Such a great post, Tanner! I can't believe what your days (and nights) are really like. Thanks for keeping us updated on things. Bela is a lucky girl to have such great parents. We love you guys!

Simmons Family: said...

Reading that blog was deja vu for me. The fears, the anxiety and the constant worrying that you will do something wrong. Then the spirit is there and suddenly you are blessed with confidence and strength to go forth and do it! I believe we are very blessed families with these precious heart babies and they are given to us for a reason. Bela will gain weight at her own pace and do just fine. We will continue to keep Bela in our prayers.

Andrea
Owen's Mommy

He has his stage 2 surgery tomorrow... say a little prayer for Owen!

Brittany & Barry said...

I was laughing and crying reading this one. I can't imagine doing what you guys are doing. What amazing experiences you are having with faith, humility, prayer, and so much else! We pray for Bela and you all. Love, love.

The Andersens said...

it definitely sounds like a lot of work to have her home. but i'm glad she's there with you rather than at the hospital. hospitals are no fun. your guys' faith and optimistic attitudes are such a great example to me. i hope bela continues to progress and that you both start to get a little bit more sleep!
alysia
(grace's mom)

mandy said...

The hospital knew what they were doing to send you home with Bella. You are definately two extraordinary people who continue to amaze me. It was great to see you guys at the park the other day. I hope Benson found Ramone:)

Sheri Packard said...

Seriously, you can call our house at any our if you need any help! We won't mind and Zach would be happy to help! But your rock for doing it yourself(with prayer). We miss Benson at the park!

Marianne said...

Tanner that was such a sweet post. I am glad she is home to be loved by the two of you. I wish I could help somehow...maybe someday cause I guess we are going to be neighbors!!

Dave & Beth Green said...

Such a sweet entry from Tanner. You guys just amaze me! We think of you often and you are always in our prayers. We love you!

Jenna McLaughlin said...

The Life of CHD parent is a never ending one. My daughter is back at St.Joes and she just underwent her second heart surgery and she is only 9 weeks old. Bella was acutally next door to us durring our first stay there. Bella truly is a miracle baby and she has been blessed with a strong mommy and daddy who do whatever is nessacary to take care of their precious child. I pray her road gets easier for her as she gets through her next surgeries. God bless you and your family.!!

Likes Chocolate said...

Hi! You do not know me, but thank you for sharing your story of your daughter Bella. I have a very similar story with my son Roman who was diagnosed at the 19 week ultrasound with tetrology of fallot. This is where the aorta and pullmonary are not attached along with a hole in his heart. I just wished there had been a blog for me to read at the time. I guess I need to write our story. Our son is 15months now. He had 1st surgery at 3m and will need another one in the future. I will keep you daughter in our prayers and we wish you all the best. Hang in there there is light at the end of the tunnel.
Kelleyn
http://picasaweb.google.com/krothaermel

Grammy Staffy said...

I found your blog through reading about Gracie Gledhill. You have a darling baby. It must be both thrilling and exhausting to have her home. Good luck with all of the feeding and medicating. I hope that she will start to gain weight soon and get strong enough for her next surgery. God Bless!

Mimi said...

Wow, what responsibility you both have. I am so glad the doctors found you fit to bring her home. Even though your nightly routine sounds exhausting. You two are amazing and we pray for you continually. Good luck and give that sweet little girl a kiss for us.

Anonymous said...

:)