They started weaning Ava's vent settings. The earliest she can come off is later tonight, but she probably will not come off until tomorrow or so, and that is only if she tolerates it of course. The poor baby has been so upset when she wakes up today. The doctors started weaning her drugs again, after going back up yesterday. She is probably waiting for her feedings to start back up as well. My poor baby girl acts like she is starving when daddy cleans her mouth. She starts sucking the water out of the thing Nate uses to clean off her lips and the inside of her mouth. She is also a little on the puffy side again...they had to give her more fluids and blood early this morning. Hopefully the puffiness will go down again, soon. I am getting so anxious to hold her again and for some crazy reason...put clothes on her and give her a bath and brush her hair. It must be the "having a girl syndrome."
Today is the day that Ava will get her chest closed. We were told that it will be around 1:00. The surgeon has a big case first thing so it will be sometime after that. I pray that Ava will tolerate it well and heal quickly so maybe we can make it home before Easter!!! If not, I guess the Easter Bunny will have to come to the RMH for Kaden and the hospital for Ava. Well, Ava is waking up, I will post more later.
Ava's chest did not get closed today. Her surgeon was out sick for the day...so hopefully tomorrow. They did increase her feeds again and took her off of another med. She was awake earlier for me and cried most of that time. Poor baby, I feel so bad not being able to hold her and comfort her, but she finally feel asleep after about 30 minutes.
Kaden had an OT appt. today to work on feeding by mouth. He did really well, accepting direction from the therapist. Nate and I were very proud of him. She gave us a lot of tips to help him...which I think now we were doing a lot of things wrong. Oh well. He has another appt. next Thursday, I am excited to see how he is going to do. Well, Kaden wants to leave a message so here goes....
star boy joe sivfkoo ava cow kaden pig dog cat apple banana movjlbfx egj; tmm,jkjjkjj j
So, there are a few words that he knows how to spell, the rest is Kaden typing like mommy. Instead of using one finger he uses all of his fingers and types fast. What a cutie. Well, I promised him that he could type more, so I will finish this post for now so he can type. Please continue to pray for Ava.
Ava will be getting her chest closed tomorrow, as long as things continue to go as they are. I was asking Ava's night nurse questions about tomorrow and the answers have kind of made me nervous. She said that having her chest closed could make her take a few steps back...and that makes me scared and sad at the same time. Ava has worked really hard to get to where she is right now and I would hate for something to set her back...but it needs to be done. So please pray that everything goes well so she can come home and live life like any other baby. Thank you so much. We will update tomorrow and let you know how things go.
So, the news is that Ava will possibly get her chest closed tomorrow!!! One step closer to holding our baby girl again and even better...going home. They increased her feeding rate to 4cc an hour and they are decreasing her drugs.
Kaden has been looking for grandpa since grandpa went home. The last two mornings he has signed "grandpa, sleep" and pointed to living room area where he slept while he was here. I have to explain to him that grandpa is not here right now, but he will be back later. I don't think he was spoiled at all while he was here : ). Nate will probably be going home Saturday night and will bring Kaden back with him. He will come back up on his days off. It is not set in stone at this point, but if Ava does get her chest closed up this week and continues to do what is wanted of her then he will. Kaden will be excited to go home and go back to school, I'm sure. I will miss him so much, but I think it will help me have more time with Ava. We will see how things go.
Well, as suspected, the surgeon did not want to close Ava's chest today. She still has a lot of fluid she needs to get rid of. The doctors did start another med to help with that, yesterday. Other than that she continues to be doing what they want her to. She does seem to have her nights and days mixed up right now. The night nurses say she has been staying awake a lot during the nights and of course she sleeps during the day while Nate and I are here. We hope that gets switched around before she goes home : ). If not, oh well, we will take what we can get.
We have met another nice family here who's baby has a diaphragmatic hernia (like Kaden). He is still on ECMO, but is having surgery today to repair the diaphragm. Please add them to your prayers today. We know how hard it is to watch your precious little one go through something so difficult and to feel so helpless. Praying and trusting in the Lord is the only way to help get these babies through this as well as ourselves.
I know I say this with almost every post, but it comes from my heart and I do not know what else to say, but thank you for all of your prayers. This is what is keeping Ava so strong, as well as the both of us, so please keep praying!!!!
Today they started Ava's feedings. She is getting them through a NG tube right now (this tube is inserted through her nose). Finally, all of this pumping is paying off!!! We are hoping that she will be getting her chest close Monday, but that is still not set for sure. If she does get closed up Monday, we are hopeful that she will be off the vent by Friday...knock on wood. I will update later to let everyone know how she is tolerating the feedings...she is only getting 2cc's an hour at this time.
We met a family today who is from the same area that Nate is from and happens to be friends with his sister and brother in -law. Their baby should be having heart surgery on Monday. Please keep this family in your prayers as well. We all know how powerful prayer has been for little Miss Ava!!!
Not much new to report. Ava is still hanging in there and giving the doctors good numbers to look at. We are hoping that her chest will be closed on Monday, but that is not a definate. The biggest thing for Ava right now is to lose some of the fluid that has built up around her midsection. It is not a huge concern right now, and she seems to be "peeing" just fine, but it will help her come off of the ventilator when that time comes. Once again thank you for all the comments, it really helps Nate and I get through these times.
Ava is still fighting. I just sit back and think..."Wow, what another miracle baby." Most people do not experience many miracles and for us to experience two in less than four years...I feel truly blessed. As I have said before, I thank God for trusting Nate and I with such special lives. We talked to the doctor earlier and he said that if things continue to go well (knock on wood) that she could be home in four weeks or so (again, knock on wood). I know that he was just guessing, but hey I will take it. She was able to be weaned from 100% oxygen yesterday, to room air today... and still maintaining her sats where they want them. She is so unbelievably strong and I am just so thrilled to be her mommy....just like with Kaden. Please continue to pray for her as God is hearing your prayers and she is not out of the woods yet and still needs every prayer she can get. Nate and I thank you all soooooo much for EVERYTHING, it is because of all of you as well for her wonderful progress...so again, PLEASE KEEP PRAYING.
Isabella made it through surgery well and is resting with the comfort of her mommy and daddy by her side. Please continue to pray for her quick recovery.
I just want to "knock on wood," it is always hard to write good news, you never want something bad to happen afterwards. So....KNOCK ON WOOD
Nate and I decided to come back to the RMH around 4:30 or so to spend some time with Kaden. After being gone all day it began to feel like we were neglecting him, although it would not be any different then if we were at work...but since he is in a different enviroment and we aren't at work...well you know. When we left Ava was still fighting and her sats increased to 78!!!, she does require 100% oxygen though, but hey she is off ECMO and still fighting what more can we ask for right now. I am just so amazed at the fight I have seen in both of my babies. Where they get it from, I don't know...but man I wish I had it.
Ava is currently off ECMO and fighting like a champ. According to the surgeon and doctors Ava will have a rough next few days. Right now Ava is struggling to keep her oxygen saturation up. The doctors initially told us they would like to keep the saturation 80 to 90. Right now Ava is between 70 and 73. The doctors are willing to accept this saturation but hopfully she will reach the 80's soon. Everything else appears to be stable (knock on wood). Please continue your prayers because we believe God is listening and guiding Ava through these difficult times.
Over the past few days the nurses weaned Ava's flow on the ECMO (heart bypass) machine from a flow of .700 to .03. This is an improvement from the last wean attempt. After a restless night we came into the hospital this morning around 7 a.m. and Ava appeared to be holding her own. Right now the surgeon and staff are in with our Ava attempting to take her off of ECMO while we wait in the parent room. If she can not tolerate coming off then the surgeon will connect her back to ECMO, but through the neck this time instead of directly into the heart. We will update as soon as we receive further information. Please pray for Ava's strength and health.
This morning the surgeon's nurse said that Wednesday will be the day that they will try to take Ava off of ECMO. We are not sure at this time when they will begin weaning her off, maybe tonight...if not tomorrow for sure. We will try to keep everyone posted.
Little Isabella is having surgery today. Please keep her in your prayers and maybe stop by her blog and leave her parents a comment. We are praying for you Bella, stay strong. Her blog again is... www.isabellagudde.blogspot.com
Kaden giving his little sister some love. What an awesome big brother.
Kaden reading to little Ava. After surgery and on ECMO. Daddy trying to comfort his little girl.
Mommy time. Looking at mommy. Wide awake before her baptism. Our family.
Here are some pictures from this past Sunday when Kaden met his little sister for the first time during her baptism. I also included a picture of Ava now, after surgery. It is crazy the difference a day (and surgery) makes. I know that Ava would not have survived without the surgery, but to see how healthy she looked and to see her now just breaks my heart. Last night, Nate, Kaden, my dad, and I went to Wal-Mart to get a few things. We then dropped grandpa off at the hospital. Daddy told Kaden that grandpa was going to see his baby sister at the hospital and Kaden began to cry. At first I thought it was because grandpa was leaving but Kaden shook his head "no" to that. I then asked if it was because his baby sister was in the hospital...he signed "yes." I asked him if he wanted his baby sister to get out of the hospital, he again signed "yes." He was crying pretty hard...it got tears going for me as well. Knowing that he understands what the hospital is and not wanting his baby sister to be there shows how amazing of a little guy he really is...that he has such a sweet and caring attitude.
The doctors have tried to wean Ava over the last 48 hours in hopes of taking her off ECMO today. We received a phone call early this morning from the nurses and they stated Ava's heart could not perform it's normal function and began to fail. The surgeon decided to leave Ava on ECMO and to try again on Monday if things go smoothly. The surgeon said it appears Ava's heart is still "stunned" from the surgery and has not fully recovered. Please continue to pray for our baby girl's strength, health, and successful recovery.
On another note, Kaden came back to KC with Grandpa H last night and is being his normal silly self. We were ecstatic to see each other. Kaden showed us all of his valentines cards he received from school and he said he had fun back home. We're not quite sure if Kaden understands everything that is going on but he appears to be happy.
Thank you again for all your support and prayers. It makes us feel blessed to know there are so many caring people in our lives.
Let me tell you, these little ones are so incredibly strong. Ava is doing what she is suppose to right now. The poor little girl has been moving a lot today and opening her eyes. She has tried crying some and gagging on that darn tubing down her throat. I just want to hold her and comfort her so bad. It is crazy how much you hurt for babies when they are hurting. If only I could take it all away. She is such a trooper though and the surgeon said she is doing well for what she is going through right now. Please continue to pray for her strength and successful recovery. Now all we need is for her heart to do the work it is suppose to do for her survival, and I believe the true test will begin Friday. If her heart can not do it's task by then Dr. O'brien said it is ok, that it still is a little early and they will just keep her on ECMO and try again later. Nate took some pictures of her and we hope to post them later.
Kaden is doing well at home. He went to school today and I from what I hear enjoyed himself. He made a valentines box to collect his cards tomorrow and grandma and grandpa will help him fill out cards for his friends tonight. I wish that I could be there with him tomorrow. I am so excited for him and can not wait to hear all about it, he is such a big boy. He will be back tomorrow night...I am so excited to be able to give him hugs and kisses.
I know many of you have read Isabella's blog or heard me talk about her. Her and her family really could use your prayers, as well, right now. She has a trach and is on the vent, like Kaden. Her parents brought her up here yesterday because she was not herself. They found out that she will need another open heart surgery...she has an aneurysym on her heart and it needs to be taken care of as soon as possible. To know more you can visit her blog at www.isabellagudde.blogspot.com Feel free to leave them a comment and let them know you are praying and thinking about them.
I just want to thank you all...again...for all of the love, support, and prayers. It really helps Nate and I to come in and read all of the positive comments left. It definately lifts our spirits to know so many people are praying for Ava. Thank you, thank you , thank you...from the bottom of our hearts.
Ava got through surgery well. The surgeons were actually able to get her off of the bypass machine (aka ECMO), although it lasted for only 10-15 minutes. She was put back on and continues to be on it. The good news is that it will allow her heart to rest after going through such a major surgery. When the surgeons opened her up they were disappointed realizing that her aorta was even smaller than they hoped after doing an echo. They explained to Nate and I that being at a 3 is severe, but hers was probably a 1 1/2 - 2. The problem isn't that the aorta is small, because they can fix that to a certain degree. However, the surgeon said that when the aorta small the corinary ateries tend to be small, and there is nothing they can do about that. I believe these arteries are what carries the blood back to the heart although I am not 100% sure at this time, we received a lot of info yesterday. Ava seems to be doing well on the ECMO machine. It was really hard seeing her yesterday after sending her off in the morning looking healthy. It really brought back a lot of terrible memories being that Kaden went on the same life support. It is the worst feeling in the world, feeling so helpless as a parent. You want to make everything better and you pray and pray that things go well for your little one and that they aren't feeling any pain but you don't know how things are going to turn out. I feel so bad for her lying there, innocent and not knowing what a good life is suppose to be like. I want to hold her close and cuddle her, but we can't. I just continue to pray that God will hold her for us and let her feel our love. I pray that she will come off of ECMO and do wonderful, but only time will tell. I think the doctors are going to try weaning her or taking her off on Friday.
Sunday we had Ava baptized. Kaden was actually able to see her and hold her and kiss her for the very first time. He is such a great big brother. He read her a book and sang her songs. It was all too cute. Kaden went home with my dad today...that way if something were to go wrong (knock on wood) that Nate and I could be at her side and so we could spend more time with her without feeling so guilty that Kaden was here at the RMH waiting for us. It was really hard seeing him leave. I think he was a little confused that he would not see us for a couple of days, but he was sooooo ready to go home. He will be back up on Thurs. I am already wanting to see him. I just want to again thank you all for all of the support and prayers. They mean absolutely everything to my family and I right now. I want to leave you with some pictures of Ava when she was first born. I will try posting pictures of the baptism soon. She looked absolutely beautiful. Thanks again for EVERYTHING.
Things are going well for Ava as of now. We are having her baptized tomorrow, before she goes in for surgery on Monday. The chaplain gave us a beautiful gown for her to wear that was donated by a family. We talked to her surgeon, Dr. O'brien, and it really made me face reality again. She has just been doing so well, and to know that the surgery could either make her better or make her worse just is hard to face. He talked about her chances after surgery and it really scared me. He talked about how hard it will be for her the days after surgery and said that with her having a syndrome that she has less of a chance for a good recovery compared to those who do not have a syndrome. He went on to say that she has 2 out of 3 chance of surviving, which to me sounded good until of I thought of the percentage. Don't get me wrong, I will take 66% chance over no chance...hey Kaden had less of a chance and look at him. I just ask that you all continue to pray for her to have a successful surgery, and a quick, painless recovery. I plan on posting pictures tomorrow...I hope. Thank you again for all of your support and prayers.
We finally have a date for surgery. I know some of you have been about as anxious as we have been waiting for one. The day is this Monday. They said first thing, so I am guessing 7 or 8. Ava is doing well (knock on wood). I hate to say too much right now. Nate and I have still been holding her which is nice and today she was wide awake for both of us. My dad just came down to help out, so it will be nice for Nate and I to see her together. It is hard right now to get on to a computer between our schedules and others using the computers here at RMH. I will continue to try and update as much as possible. Thanks again for all your support and prayers.
Well, we are still waiting to find out when the surgery date is. I believe we will find out tomorrow when everyone comes back from the weekend. I pray that it will be soon-. Ava is still doing fine, maybe not as well as when she first arrived, but she is still fighting. Unlike Kaden, Ava is getting too much blood/oxygen to her lungs. The docs want her sats around 88-92%, she was in between 96 and 100 so they had to put her under a hood (almost like an oxygen hood). Instead of receiving more oxygen, it gives her less than room air (room air being 21%, she is getting 16%). Her blood gases were slowly getting bad and they discussed putting her on the vent, but opted to try lasix first being that she had fluid building up around her heart and lungs. So far it seems to be doing the trick, please pray that it continues to work and that she will stay clear of the vent until of course surgery.
She is still gorgeous as ever. I am sorry that I haven't been able to post pictures, I have no way of doing it on the RMH computers. Micah, I thought Nate had your phone number to text a pic, but he said he didn't and for some reason I never saved it in my phone, so if you and Megan want to e-mail me your numbers I can always send you one. I believe everyone else received a text, if not I am sorry and if you want you too can send me your number and I will do so. Thank you all for the prayers, please continue to pray as she is not out of the woods yet.
P.S Kaden seems to be adjusting well to mommy and daddy taking turns going back and forth!!!! We were able to take him to Sesame Street Live yesterday (thanks to the RMH). After his inital fears...he absolutely loved it. It was so fun for Nate and I to see him enjoy something soooo much. We have lots of pics to post, hopefully I can send my memory card home and have my parents or sister do it.
Ava was born on Thursday Jan. 31st at 9:15pm. She weighed 8lbs 7oz and was 20 1/2 inches long. She is doing well (knock on wood). I went in Thurs. morning for the induction and found out that I was already at three cm. They started inducing around 11:30 and after awhile it really started kicking my butt. I could not believe how fast the contractions were coming on. I was having them every minute and a half and they each were lasting about one minute (how fun!!!). I decided to go ahead and get the epidural, which may I add was an absolute life saver once again. They checked me again around 7:00-7:30 and said I was now at a seven. Around 8:00-8:30 I started to feel some pressure and joked around with my mom and Nate that her head must be on it's way out. The doctor came in again right before nine to check me and when she looked she said "Oh my, her head is right there." She broke my water and set everything up, got everyone there and I started "pushing." It took about 2 minutes and she was out...I pushed for maybe 15 seconds...let me tell you that was even easier than when I had Kaden and I didn't think it would get any better than that.
They put Ava on my chest and then took her over to where the bed was setup to clean her off and make sure she was stable...SHE WAS...so then we were able to hold her for about 30-45 minutes or so. It was absolutely unbelievable. Ava is doing great right now...she is breathing on her own and without oxygen (knock on wood). We have been able to hold her and kiss her. I am so grateful for everything. I pray that she continues her strength up until, through, and after surgery. We still do not have a date for surgery, but I guess it is for some time next week.
I did get discharged from the hospital, after some begging, because I missed my little Kaden so much and he was begining to get upset that mommy was not around. He was not allowed back into the maternity ward so we weren't able to see each other. My parents and Nate brought him to the waiting room this morning and I went out there to visit...it made me almost cry when he saw me. His eyes got bright and he got so squirmy and basically jumped into my lap. When I had to go back in he kept shaking his head no...sooooo I promised him that I would come back to the Ronald McDonald House today to stay with him and that is what I did.
I will continue to try and keep everyone updated on Ava's progress. Thank you all for your prayers and support.
March 31st is Congenital Diaphragmatic Hernia Awareness Day. Please wear turquoise this day for Kaden and all of the other's who have been diagnoised with this birth defect.
Jan. 31, 2008 to May 7, 2008 You are in our hearts and will be forever. We love you baby girl and miss you so much.
Our Big Boy
We love you bubby.
While we try to teach our children about life, our children teach us what life is all about. (author unknown)
Special Angel In Heaven
There's a special Angel in Heaven that is a part of me. It is not where I wanted her but where God wanted her to be.
She was here but just a moment like a night time shooting star. And though she is in Heaven she isn't very far.
She touched the heart of many like only an Angel can do. I would've held her every minute if the end I only knew.
So I send this special message to the Heaven up above. Please take care of my Angel and send her all my love. -Author unknown
A WALK TO REMEMBER
I walk to remember the steps you'll never take. I carry you with me as I firmly plant my feet. Our trek started long ago, before my belly swelled. You were a love that grew-like butterfly wings that beat. Your gentle flutters than became kicks upon which I would dwell. And I would talk to you, sweet babe, about the world you soon would meet. The sun always shown upon us then-when you were in my womb. And I was eager to show you the world that would have been your home. How you'd have loved the sun shining-blue skies without a cloud. The autumn leaves turning-the snow falling all around. The flowers in the summer,would have filled your eyes with smiles. And the rain that might have fallen would have caused you great surprise. You would have traveled far with me-holding me by the hand. And I'd have shown you all I could-more than I can imagine. You hold my heart tightly now, as thought we're holding hands. How far we've traveled, little one-and my life with you has been sweet. For I carry you in my heart as I firmly plant my feet.
I have four wonderful, beautiful children. Three are here on earth with us, the other received her wings and is now in Heaven watching over us. I take pride in my children, they are the strongest people I have ever met. I have been blessed to be a part of their lives. I am TRULY grateful that God chose my husband and I to love these children. I have never known a greater love than a mommy's love.
THE CHOSEN ONES I had a dream the other night. It came to me so clear. I stood before the throne of God,afraid to come too near. God said to me, "I hear your prayers. There are answers you can't find. I brought you here to talk to me and help to ease your mind. "I said,"Well, yes, God, I am upset...About my special one. This punishment is awfully harsh...Whatever have I done?" God looked at me and shook his head, He said, "My Dear, you've got it wrong. I sent this special child to you because you are so strong. I searched and searched to try and find someone with a love so rare. Parents so unselfish they could give him that special care. I try to save my special gifts,like those you're speaking of,for a special kind of parents I call the 'Chosen Ones. 'Of all the ones to choose from,I know I've got it done...Parents who deserve my best,an honor you have won." -Unknown