Friday, November 28, 2008
Well we certainly have so much to be thankful for this Thanksgiving. We are so very grateful for all three of our daughters. It is so amazing to know that God loves us and He cares! WE especially can rejoice that Ava is alive. She nearly lost her battle just a few short weeks ago. We know that she is strong and that she is a fighter girl!
So we are still in the same boat, Ava is trying to take in liquids and some solids but not much stay down. We carry around "the bowl" where ever we go now. Sadly we have grown accustomed to it. It breaks my heart that she feels so sick. There really is nothing that they can do for her. We have to wait this out. Her intestines are just not healed enough to do the surgery yet.
So my life consists of being a Mommy and now a nurse. Here we are changing her Hicman line dressing. (Emeline was the photographer. A little blurry but we take what we get.)
Now this is me getting her nutrition bag ready. I have to mix the fats and the vitamins into the bag then prep and fill the IV line.
In this picture I am giving her Protonics (acid reducer) medicine. This medicine you have to push through her line for 2-3 minutes and then flush it for another 2 minutes. I sure have learned a lot in such a short time. (This is definitely not a great shot of me but the photographer- Emme- tries her best!)
Well we started Ava's line tonight and I looked about 10 minutes later and there was two feet of blood backed up in the line. Yikes not again. I called the home health care nurse and we just stopped it and started a brand new bag and line set up. Something was definitely wrong with that one. I just hate when things go wrong because I am not trained for this. Panic yes that is me. Okay so then I took a deep breath and began thinking of trouble shooting things. Thank goodness the second line we started was fine. So after all that Ava woke and she is wide awake now. It looks like it is going to be another LONG night.
One more thing...I want to thank Carrie from Mazzio's. She helped to put out a donation cup for us. Brian was telling me all about it today. Bless her heart she wrote up a little information about Ava's Congenital Diaphragmatic Hernia and what was going on now in our life. We have already got over $150. from that donation jar! I am just always so humbled by how God takes care of us. He is good. Thanks again Carrie. We really appreciate it. (Debbie we hear you have one too at Goodie's Galore. Thank you as well.)
This is Miss Ava doing what she does best, messing with the TV!
Good night to all and thanks again for your prayers!
Wednesday, November 26, 2008
Here is Ava and grandpa.
This is what Ava did when they asked if they could see her belly.
We were up all night last night. She just wouldn't calm. I get so worried. The last thing I want is her back in the hospital. I do know that they can't give her much for an upset stomach. Right now she is on Zophran and they give this to chemotherapy patients, this is the strongest stuff out there. My poor baby just feels miserable and I feel helpless.
Today she seems better. A HUGE thing happened this morning. Lisa came over this morning and by the doctors call we removed the wound vac and place a special dressing on her open belly. I'm not sure she liked this new bandage at the start but once she realized she was no longer hooked to the big fat cord she was once again a very happy girl! Here is her new tummy covering.
Lexis was so excited for her that they got a little crazy jumping on the bed and up came throw up. She was so grossed out by it that she jumped back. Somedays I feel like doing that too! BUT Mom's unfortunately have to be there to wipe the mouths and hold the bucket.
A LARGE shout out thank you to "The Collins Crew" We recieved a very large box yesterday from Teresa, Seanna, Caleb and Elianna. It contained things for ME, (yeah) Ava and Lexis and Emeline. It was the sweetest thing I have ever gotten. To feel so much love and support from strangers is just unbelievably marveleous! I got a beautiful bracelet that said "Expect miracles" and also a beautiful plaque that said, "Miracles Happen The most astonishing thing about miracles is that they happen!" Ava got a beautiful, very, super, soft, vanilla colored blanket. AND three adorable absolutely PEREFECT hats! (Thank you beyond words. Tears filled my eyes. How special my daughter was to cause this kind of pesonal heart felt reaction.)Then she got the most precious fingernail polish and nail art. (So special of a treat for me and Ava.) Lexis and Emeline were thrilled to know there was a package for them as well. They got art and crafts. They were busy all night making things for all their friends. I just can't thank you enough Teresa! It touched me dearly.
Here is Ava's nails when we finished the manicure last night thanks to "The Collins Crew!"
This is Ava opening her gifts. She was so excited!
Now it was Lexis and Emeline's turn for gifts!
Last night I dressed her up for some really girlie shots. I couldn't resist! All her adorable hats just make me want to cry. Thanks you all for sending them.
Teresa the hats fit perfect. Thank the wonderful lady that made them for my Ava. So precious!
Holly thanks again for your adorable hats you sent Ava a few weeks ago. You are such a wonderful friend!
Just one more thing to add. I talked with Ava's surgeon from Children's Hospital of Philadelphia last night. He reassured me that Dr. Shilyanski was doing all he could for Ava and that he was a very skilled surgeon. I was doubting whether we should take her to "the best" again but I am happy with his response. I asked God to give us an answer soon as to what we were to do. I feel better now.
Thanks everyone for all you love and prayers. We can feel them daily. I will leave you with this beautiful picture of my 3 miracles!
Sunday, November 23, 2008
I want to thank my aunt Janice, my cousins, Mindi, and Heidi for our lunch today. The meatloaf was so good. The girls loved the potatoes and the corn was to die for! We are so blessed to have such wonderful family members!
As usual here are a few pictures of today!
Some of you were asking about Ava's arm. It does look much better than it did. Here is what it looks like today. I put mineral oil on it about 4-5 times a day to keep it moist. We call it her ouchy. We try to keep her sleeves up so air gets to it at all times. The burn doctor told us that she will have a scar. Her skin will never be the same color. It makes me so sad. To this day I really have not dealt with all that went on with her burn. If I make myself go there it is just too hard. I know in time I will have to face this head on. This should not have happened.
Her head, where they took the skin graph is healing as well. Her hair is coming in faster than I had anticipated.
So we are happy with how she is doing. Her heart rate was much lower last night and she only woke once. She was up while I did her medicines and took her temperature. Then I put her Elmo video in her portable DVD player and 35 minutes later she was sleeping. What did we do without portable DVD players before now?
I hope you all have a good night. Thanks for checking in on our family. We love that you care!
Saturday, November 22, 2008
Friday, November 21, 2008
She is throwing up less and less each day. The wound vac changing went well today with Lisa the home health care nurse. The vac started making funny noises tonight so Brian had to add more tape. Ava wasn't thrilled but so far it is working.
I started her IV up again tonight at about 8:45pm and she is sleeping. We are so happy that God allowed us this time to come home. It feels like Heaven to us. The girls are so happy. It is so wonderful to just BE!
I have to thank my cousin Mindi and her husband Ed for making us Spagatti. It was fabulous and the best part is I didn't have to cook! You both are super!
Well let's hope Miss Ava sleeps tonight. She has done much better at home than in the hospital. She is a different little girl. I honestly think she was started to get depressed about her condition. She was very unhappy. Now she is filled with smiles. I can thank God and all the Heavenly angels watching out for our little Ava. She most certainly is a miracle sent from Heaven! Thanks for your love, support and prayers!
Thursday, November 20, 2008
Mommy learning to give Ava's medicine through her central line.
Ava ready to go.
Yea we are leaving the floor!
Happy girl as we got in to the Suburban. "We are going home!"
Here is Miss Happy Girl in the chair at home for the first time!
Repeat picture of Lexis and Emeline as was taken after she got home from the NICU. Super sweet. Finally all together safe in our home!
So I slept a little better last night but I was still very worried. All her care was up to us. That is scary. She slept on and off until about midnight and then she couldn't settle down so I gave her the Ativan. That drug is fabulous. Then she slept for about 3 hours.
The wonderful thing was that when I woke this morning I saw Lexis looking at Ava in her crib. Tears filled my eyes. "We were home!" Ava had a big smile on her face. I asked her if she liked to be at home and she shook her head YES!
I was very excited to find out that our same home health care nurse is going to be coming back to change Ava's wound vac. Lisa was very good with Ava when we came home from the NICU so I am a LOT relieved. It is so hard and time consuming to give her complete health history to some one new. God knew this was one thing I needed peace about. "Lisa we are happy you will be taking care of Ava."
So I've given her the medicines of the morning. She just fell back to sleep about 20 minutes ago. Brian's Mom was here this morning to take the girls to school. Ava didn't want them to leave but she happily blew them kisses. My Mom is here now helping me get organized and of course doing what she does best, CLEANING!
Oh one more thing, my cousin Mindi made us salads, roast and potatoes for super. "Mindi it was WONDERFUL! Thanks a million for thinking of us. And all your supportive emails they bring me to happy tears every time. Thanks so much.
To you all, keep the prayers coming. In order to keep Ava at home we MUST stay fever free and moving up and not backwards. I feel fine taking care of her as long as things are going good. If not we will be right back. So please pray this is exactly what our daughter needs to get even better! We know she is no where done with this whole process but we are so happy that the doctors trusted us enough to let her come home. We know how rare this is for her to be in our arms in our own nest. Most children have to stay at the hospital. We are thrilled we can take care of her here!
She has an appointment at UNI on Tuesday. The plan is to do another swallow study test. Let's hope she starts taking more by mouth and is attempting to eat!
Wednesday, November 19, 2008
It was a disaster trying to leave. We waited about 4 and a half hours for her medicines. She had two dressing changes today and she was very mad. They made me change her central line dressing. I did good they said.
So I will post pictures tomorrow. I really think Ava didn't believe us that she WAS going to be going home. As soon as we got to the Suburban her eyes lit up and a huge smile went on her face. I was so happy.
She slept most of the hour and fifteen minute drive. She woke when I got her our of the vehicle. She was grinning ear to ear as we got into the house. She was so excited. I sat her on the chair and immediately turned on her "Little People." The grin never left.
The girls are loving her home. It is so great to be home. I too want to smile from ear to ear but am just exhausted.
I wanted to thank the wonderful staff at UNI. Josh we love you! All our nurses were great! I would love to say we will miss you but well we won't!
Thanks for the prayers and keep them coming. I am a nervous wreck but I know that with practice I will feel more comfortable. It is SO worth it to be HOME!
I will post pictures tomorrow.
Tuesday, November 18, 2008
I also have another blog with all the videos I have made to help get the word out about Congenital Diaphragmatic Hernia. It is cdhawarenessvideos.blogspot.com Feel free to go and look around.
Monday, November 17, 2008
Ava and I got such an amazing surprise today. An envelope came in the mail. It was from Amanda in Missouri and her day care class. She reads our blog and she told her kids about Ava. They all wrote the most beautiful get well cards I have ever seen. Tears came to my eyes as I realize how Ava's journey has touched so many people, from all over the United States. I just praised God all day for his goodness for our daughter.
"Amanda tell those children Ava loved their cards. We put them up on her door. She smiled so big s she was looking at each one. They really truly made our day. We so appreciate your tender heart. God bless you and each and every one of those kids! Thanks you so much for thinking about Ava."
I remember telling the doctors in PICU that if Ava was meant to survive there was nothing they could do to her that she couldn't fight.
She had a great day today. Ava's tummy is not wanting to cooperate with us on feeding. This is just going to take time. She threw up seven times today. It is very hard to watch her be sick. The doctors are hoping it will get better. It sometimes takes the stomach a while to start working again. We know her stomach empties very, very slow even before her reherniation surgery.
They are talking about discharge. I told them I was ready I just needed to be taught all about her care. I sm not afraid any more. I just want to go home and sleep in my own bed! Brian spent all week end trying to get the house ready for Ava's return. He moved her bed in our room and moved furniture around. I just can't wait.
She was in a very good mood today. She reserves her smiles only for the best!