Thursday, July 11, 2013

Yet another baby...........

Yet another baby....... The e-mail below is about baby Kevin who was given a dire , dire picture by an East Coast hospital . Now he has a complete repair. Hey Astrid I am so happy to announce that KB received a full heart repair! Dr. Hanley said he did great! He is on his way to recovery! Thank you for your love, support and many prayers, and showing me the way, you are a human ANGEL couldn't of done it without you all! Love you! Kevin and Rahnesha I know I haven't written for a long time. Many , many more babies have had a complete repair by Doc Hanley at Stanford while the parents were told that this wasn't possible and that they sure would lose one lung or even would die..... I am so happy more and more parents are listening . Eliana is still doing amazing . I will add a picture of her . Please don't hesitate to contact me . I will help in any way I can !!

Wednesday, November 14, 2012

Eliana talking about heaven

I promised to write about Eliana's "talks" about Heaven. It is hard to do this objectively , so I will try to literally write down the words she said together with a little context. I have been keeping a diary , so it will be easy to quote her verbatim. Keep in mind that Eliana hardly has been to church the first years of her life . She had to be isolated in order to prevent getting sick.... Here is my first diary entry. Eliana is 2.5 years old . She just started talking . Being bilingual she has a slight speech delay . Amazingly because she is bilingual NOT because of her “ catastrophic” stroke . Since I quote her literally her sentences are 75% in English and about 25% in Dutch. August 10 2012. A few months ago , while taking a shower together Eliana blurts out. “ The doctor didn’t take my “ouwie “ away , but God did ! “ “I was really , really dood ( dead ) and sick. The ghost brought me naar jou ( to you) I was in de hemel ( in heaven) toen ( when ) ik ( I ) was ziekie ( sick ) I had “ouwie” on my arm. She is a nice one ,too. And a bad one. I ate a blauw ( blue) cookie in de hemel ( in heaven ) You and me and daddy always go in heaven.” End quote. She kept talking about the “bad” ghost bringing her back . The bad ghost who was nice,too. I kept asking why she called the ghost bad if she was nice. Suddenly it dawned upon me. I said “ you wanted to stay , didn’t you ?” Then the weirdest solemn look appeared on her face. It seemed she didn’t want to admit . Slowly she nodded her head in a “yes” “Yes, I wanted to stay , but now I am happy to be with mommy and daddy “ ++++++++++++++++++++++++++ August 21 2012 Diary entry. Today Eliana and I were looking at pictures in an angel book . ( first time ever , never really mentioned nor talked about angels ) She pointed at one and said “That’s the wrong color “ ( it was wearing a brown robe ) then she pointed to an angel in white and said “That’s the right one” I asked “ Did you see one like that ?” She pointed to the window. I asked “Outside?” ( didn’t want to put words in her mouth ) She said ” No, in Heaven ” I exclaimed ” I would love to see an angel ,too ! ” Eliana in a soothing voice ” Dat komt wel mama, als je in de hemel bent “ (don’t worry mom that will happen when you are in heaven ) Life with Eliana is amazing. I have never been so whole. +++++++++++++++++++++++++++++++ August 29 2012 Diary Entry This was in the bathtub of course ! I love how she pronounces believe as “bewieve “ ! Just now Eliana asked . “Mum , what do you bewieve ?” Me: What do you mean? Eliana “What you bewieve is who you are and what you need “ +++++++++++++++++++ September 2012 Diary entry Still trembling and shaky and I swear I am speaking the truth although I hardly believe it . Eliana......just put her down to sleep. Sang a Christmas lullaby “Er is een kindeke “ for her since she needed calming down. She is still so excited about her pre school ( a secular Montessori school ) I sang a song about baby Jesus . She doesn’t know him in any other capacity then being a baby. She never went to Sunday school , nor did she ever hear about the crucifixion. ( Just checked with G. our very Christian babysitter ) Suddenly Eliana said. “Jesus is better now” I said “ What do you mean ?” Eliana “He had blood “ I asked “ Where?” Then she told me as serious as she never had been before. “On his feet” “On his hands” “Out of his eyes” And while touching my cheeks “ On his cheeks” My heart started beating super fast. Where did you see that ? Eliana”In heaven” I started crying. Eliana never likes when I cry and almost started crying,too. I stopped immediately. She said” Don’t cry , he is better now!” I asked “Why did Jesus have blood ?” Then Eliana got a smirk on her face and said in a very suave tone “ Oh ,he ? “ “ He was run over by a car ! “ Me : “ Are there cars in heaven ?” Eliana smirking “ Mom , THAT last part was a joke !” +++++++++++++++++++++++++ Nov 4 2012 Before this afternoons concert I was showing Eliana my new very shiny golden glittery stockings . They were as shiny as the the sun . I guess , now I think of it , even a little bit too shiny to be on stage ! :0) Now I quote. Again totally out of the blue. Eliana: “Mama , zijn je panties dood ?” ( Mom ? Are your stockings dead ?) Me; mmm? Why ? Why would they be dead ? Eliana pointing at the glitter “ Because that’s how it is in heaven “ Then , in a soothing voice. “Always bewieve mama , always bewieve ! ” End quote. Isn’t this amazing ? If I had to invent quotes of children about heaven I would never ever even have been able to come up with something like this . Days/weeks/ months go by without any extraordinary sayings of Eliana. Then I think it is all over and then “boom” she floors me again . Eliana was 2 months old when she had the catastrophic stroke and 9 months old when she was on the brink of death ( life support ) for 1.5 days. She was on Ecmo. A device which does all the “pumping “ the heart normally does. She must have had a classic near death experience A NDE when she had no words yet for the “things” she saw and experienced in a wonderful and true “heavenly “ place ! Just a few weeks ago Eliana drew a picture of the blue round “cookie” she saw in heaven. Ever since she was able to talk , she has been talking about these blue round “cookies” of heaven. I will add a photo of the picture Eliana drew. It is so detailed. They certainly don’t look like earthly cookies .. Here is Eliana describing her picture . “Cookie die ik gekregen heb van meneer God in de hemel ( Cookie I got from Mister God in heaven ). He said eat Eliana , eat ! “

Sunday, November 11, 2012

Just got another message .

News from 2 families

Tonight I saw these 2 posts on my facebook from 2 families I talked to last year about their "given up" babies with TOF/PA and mapca's. Two completely different families posting at the same time. It is an outcry to reach more families. PLEASE read. Last year around this time 5 different families contacted me in 4 weeks time. Ever since nobody anymore..... By the way :0) Eliana is doing better then ever, Here is a recent picture of her ! She is going to pre school and LOVES it ! She is having a runny nose all the time and never even has gotten a fever . Her body is so strong now ! I remember doctors telling us we would have to go to the hospital EVERY time Eliana would have a cold.......... Isn't that amazing ? We are so thankful ! Eliana also started talking how it was when she was (in her own words) "very,very sickie, dead and in heaven." I wrote everything down in my diary. The most amazing things . It's late now , but next time I will write them all down !
Astrid Walschot-Stapp shared Doria-Family Our Journey's photo. 8 hours ago This is the baby of the parents we talked to last year ! It still mystifies me why no East Coast Docs could /would tell them about Doc Hanley ! If you know of any babies with TOF/PA and mapca's. PLEASE let them know about Doc Hanley !
One year ago today we were told there was no hope for this baby. We were told that she would probably never leave the hospital and if we chose to operate on her, it would only yield a poor quality of life for her. For all of you out there that feel like everything that has occurred over the past few weeks has left you with no hope, please believe, have hope! People are praying for you, sending you positive thoughts your way and trying to do what they can to help you. Some of these people you know, some you don't. We know this is true because this is what happened to us. And you know this is possible because you are the people and the community that stuck by us and told us to have hope. You prayed for us, sent us positive thoughts and gave us the strength we needed. Please have hope things will get better and you are not alone. Every time you think you've had too much to deal with, think of our miracle and draw strength from us. Just as you told us to have hope, we ask the same of you. Our prayers and good thoughts go out to you and your families. I know one day soon you'll see Teagan and you will know what an important part you have played in her life. You gave us hope and we hope she does the same for you

Second facebook message

This is the second facebook post from Renee Krieg I copied it and posted. Renee is a Thoracic cardiovascular nurse. Last year she saw this blog and found her way to Doc Hanley ! Fight for your children!!!!! THe Doctors are not always right !! If Aaron and I gave up on our son he would no longer be here!! We put Cody in Gods hands and he sent us to Dr Hanleys hands! No matter what a child has to conquer it is possible!! These little babies are gods angels!! He gives them to us to show us how important life is and how amazing HE is!! Cody was born with TOF pulmonary atresia, MAPCAs and Allagile Syndrome!! He is amazing he was left to pass on and has had RSV and one heart surgery so far!! Because of his Allagile syndrome he may not be able to be repaired , but if that is the case the way he is is Gods will and he way he is meant to be! Our faith an hope remain strong! Never give up these little people they are amazing! Our son has never been on oxygen since we left the hospital last March, how amazing Gods Grace remains!! In Gods hands a always! Search out for your children East Coast medicine is behind !! I am a thoracic cardiovascular nurse!! please search out there and never give up these children want to be here!! My son has no learning delays!! The folks and Lucille Packard Children's are wonderful !! Love and prayers to all;)

Monday, January 9, 2012

E-L-I-A-N-A looks like my prayer at the beginning of this blog is being answered in the most amazing way !
Somehow this little blog is reaching more and more people.
Just in the last 3 weeks we got three phone calls of parents of babies like Eliana .

They were given not much hope if any......
But look at the e-mails below ( parents gave permission ) ! :0)

It makes my heart sing.

E-mail 1

We had our conference call with Dr. Hanley. He said that he won't know for sure until after she is born, but he said from what he has read in the reports, he feels he will be able to operate! He said he will continue to monitor her echocardiograms, but he feels strongly that I will be able to deliver at NY Presbyterian Hospital. Once she is born NY will do the cardio catheter and he will know then for sure how to proceed. But he is saying based on what he has read, she will be able to go home with us about two weeks after she is born. Then around 3 - 4 months we can bring her out to him in CA to operate. We could not have asked for better news!!!!!

We are so thankful to have found your blog. You have given my daughter a better chance at life. Thank you so much for sharing your story and saving us from making the biggest mistake of our lives.

A very thankful,

e-mail 2

Will and Astrid,
> Hi How are you guys?? I
> wanted to let you know that the conference call went well with Dr. Hanley.
> He said he was moderately optimistic he could help Cody. He said he may be
> able to fix him in one surgery but he wont know for sure until after the
> cath. I told him you guys said hello and he said you were wonderful people
> and of course I concured. He seems to be quite a wonderful man himself.. I
> also spoke with Dr Stafford whom of which is also quite wonderful.. The
> people out there so far seem to be amazing so different from most of the
> folks here as much as I wish I couldn't say that..
> Just gonna take one day at a time and be thankful for everything we have
> so far. They have given us much more hope for little Cody to survive and
> have a normal life span, he will always have CHD, but as I said much hope
> and happiness to share!! Once we get through his surgery and start moving
> forward we can work out some times to meet and figure out what we can do
> to help others. I have some plans to share to with you guys to see what
> you think and I am sure both of you do as well.. We can make a
> difference!!!! :) I truely feel we can.. Look at everything you guys have
> done so far.. My husband and I cannot be greatful enough for what you and
> Eliana have provided for

E-L-I-A-N-A I remember like yesterday seeing her name engraved in my mind.
She wasn't even born , I didn't even know the meaning.
E-L-I-A-N-A " My God has answered me "
I can say with whole my heart YES !HE HAS and IS and always WILL .

PS; UPDATE ON BABY JULIA ( HLHS , Eliana's playmate )
Doc Hanley was able to do the Fontan WITHOUT Heart/Lung bypass !
This Christmas was Julia's first day without her oxygen mask !
Baby Julia was out of the hospital in 3 weeks !