Little Angel Hailey

[Hailey's Mommy]

Hello Everyone,

I am new to this website and my name is Jenny Janes from Plano, TX. John has already told our story of our sweet Hailey. I think talking to you all who have been through this same thing will help us both and hopefully we will be able to help others too. It all started with my 18 week sono. Haileys femurs (thigh bones) were bowed and her kidneys were enlarged. From that very 1st sonogram they told us she MIGHT have Camplomeic Dyplasia. I was so excited when I first walked in the door of that Doctors office ( I was finding out the sex of my 1st child) and I would never have thought that I would be leaving in tears and so worried. The sonos countined once a month until I hit about 5 months pregnant and I had gotten so big it looked like a was having twins. I got very concerned as well did the doctor and she sent me for another sono. I had way to much fluid or what they call Polyhydramnous, Hailey was not swallowing the fuild the way she was supposed to. I had about double the normal amount. It stayed that way up until I went into pre term labor on Christmas Eve at 28 weeks and with so many complications it did not look good. They stopped my labor but I had to stay in the hospital for a week and then they sent me home on some medicine that would keep the contractions away. I was on bed rest for about 8 weeks and they induced my labor at 36 weeks because they were afraid that my water would break and her cord would prolapse because of all of the fluid. I was in labor for 12 hours when my beautiful little girl was born. This whole time throughout the sonos the doctors went back in fourth on if there would be something wrong with Hailey. One week they would say she was just going to have bowed legs (Which we felt could be possible because John and I both had to wear corrective shoes as newborns) and the next week it was Camplomeic Dysplasia again and then they did not know and would not know until she was born. SO John and I hoped and prayed for the best and never gave up on our baby girl. When she was born, I immediately knew something was wrong the NICU team came in and I got to hold her for what felt like half a second and then they took her away. I was so upset I did not understand why or how my baby could be sick. She was soo beautiful, she had no deformaties like they said she would have. Hailey's chest was very small compared to her stomach which made it almost impossible for her to breath on her own. About 2 1/2 hours after she was born I finally got to see her in the ICU and I was so scared. She was on a vent and was so pale. All of my hopes and dreams for my little girl felt like they were slipping away. Days went by and we got to talk Genetics and she gave us hope she said that she did not agree with Camplomeic Dyplasia and that Hailey had Femural Hypoplasia(which is a big difference from Camplomeic and not fetal just means she would have short legs) so that day we left with Huge smiles on our faces and tons of Hope that now all we needed to do was to get her off the vent and we could take our Hailey home. Hailey came off the vent and words can not describe how we felt. Was all this worry for nothing is our little girl coming home?? Hailey started having tempature spikes and was not maintaining it at all one minute she would be 102.7 the next 95.3. The doctors did an MRI on her to figure out what was going on. I will never ever forget getting the results from that MRI. My heart dropped and my whole body felt numb. Hailey had blood in her brain and also Hydrocephalus ( which is fluid built up around the ventracules) which is caused by strokes. My baby had a stroke and I was floored!! Is that even possible??? They also found a deformaty in her cervical spine which was putting pressure on her cord. They would have to do surgery sometime soon. On top of that she was not doing good off the vent poor weight gain because she was working so hard and staying awake all day and night because she was struggling so hard. Hailey was a fighter, you could see it in her eyes. That night we were transferred to Childrens of Dallas. I hated it there. I felt uncomfortable leaving Hailey so John and I stayed a lot of nights there. They put her in a neck brace ( which was awful) and pressured us on the surgery. We wanted to do some research before they just went in and messed with her spine. After talking to several doctors we realized that Hailey would not have a life. On a vent and would need a trach and several surgeries throughout life and a feeding tube. She would never walk, never talk, and because of the stroke never know who anyone but John and I were. (If she knew that, they said we would be lucky) We went back to Presby Dallas and made the final choice. It was what was best for Hailey and we had to take us out of it and see that she was suffering. I would suffer for the rest of my life or gladly take her place has long as she is ok. I miss her more and more each day and Have so many questions that I feel dont have answers. I cry over everything and feel like my heart is missing. I miss seeing her everyday and when I got to hold her the way she looked at me was amazing My little girl is now my angel and I dont know how to accept it. How do I move on without her? I feel so wrong and guilty. Why my little blue eyed baby girl. Maybe someday I figure it out. But that is my 15 page story of my little Angel. I just hopes she always knows the choice we made was out of love and nothing else. If anyone reads this Thank you for listening.

[Lindzy Foster]

Jenny,
dont you even worry about writing long blogs you can write as much as you want or as little as you want or somedays i just come and read and cant get up the courage to write anything...i looked at the picture of your sweet baby Hailey, she is beautiful....i know how emotional you are right now...the best way i describe it is like a roller coaster of emotions...everyone is diff though, we all feel the pain of the death of a child but each path is just a little diff, no two are exactly alike and the way we grieve is diff as well....you may find that you and your husband grieve diff as well...darin and i certainly do but we have learned how to accept and support our seperate processes..i know that for us we were probably mostly in shock the first 6 weeks after our angel Kaydence passed...and since then the grief comes in waves...having questions is normal...everything you are feeling is normal...if you have a question post it on here...someone will try to help and answer as best we can......i know that i have those guilt feelings as well...maybe if i had done this or that things would have been different...but try not to feel guilty...you both made your choice for your daughter...it was made out of love....now i have rambled on but just want you to know we are all here for you whenever you need us...sending you prayers and (((hugs)))
Lindzy

[Lona Kruse]

I'm so sorry you are going through this Jenny. I wish there was something I could say or do. You made the right decision and I so honor you both for that. It is so hard to let go but it is best if it as done from the heart and not from the mind. It is natural for our mind to say don't let go but when we know what our Angel will go through only for the result at the end to be the same but with a whole lot more suffering what you both did was so honorable. I know it was so hard but she is there with you in spirit all the time and 100% heathy. I lost a baby when I was only 20 weeks and I was just crushed I had such a hard time dealing with it until one day I was listening to Joel Osteen and he was talking about our loved one that would be waiting in Heaven for us that they would be there to greet us and show us around and they where up there with all our loved one that had passed taking care of each other. I vision my mother in law up there brushing her long beautiful hair and taking such good care of her that It made me feel better. So when I get real sad and it's been 19years thats the vision I bring to my mind and there is a calm loving feeling that comes over me and I'm ok again. Each and every time that happens to me thats what I do and it is a beautiful vision that comes to my mind and I'm not sure how I come to that picture thats in my mind but it's there and it is always the same. I hope this helps I will always be here if you ever need someone to talk to so please if you ever need a friend I will be here. Thanks for sharing your story... Lona

Hello Everyone,

I am new to this website and my name is Jenny Janes from Plano, TX. John has already told our story of our sweet Hailey. I think talking to you all who have been through this same thing will help us both and hopefully we will be able to help others too. It all started with my 18 week sono. Haileys femurs (thigh bones) were bowed and her kidneys were enlarged. From that very 1st sonogram they told us she MIGHT have Camplomeic Dyplasia. I was so excited when I first walked in the door of that Doctors office ( I was finding out the sex of my 1st child) and I would never have thought that I would be leaving in tears and so worried. The sonos countined once a month until I hit about 5 months pregnant and I had gotten so big it looked like a was having twins. I got very concerned as well did the doctor and she sent me for another sono. I had way to much fluid or what they call Polyhydramnous, Hailey was not swallowing the fuild the way she was supposed to. I had about double the normal amount. It stayed that way up until I went into pre term labor on Christmas Eve at 28 weeks and with so many complications it did not look good. They stopped my labor but I had to stay in the hospital for a week and then they sent me home on some medicine that would keep the contractions away. I was on bed rest for about 8 weeks and they induced my labor at 36 weeks because they were afraid that my water would break and her cord would prolapse because of all of the fluid. I was in labor for 12 hours when my beautiful little girl was born. This whole time throughout the sonos the doctors went back in fourth on if there would be something wrong with Hailey. One week they would say she was just going to have bowed legs (Which we felt could be possible because John and I both had to wear corrective shoes as newborns) and the next week it was Camplomeic Dysplasia again and then they did not know and would not know until she was born. SO John and I hoped and prayed for the best and never gave up on our baby girl. When she was born, I immediately knew something was wrong the NICU team came in and I got to hold her for what felt like half a second and then they took her away. I was so upset I did not understand why or how my baby could be sick. She was soo beautiful, she had no deformaties like they said she would have. Hailey's chest was very small compared to her stomach which made it almost impossible for her to breath on her own. About 2 1/2 hours after she was born I finally got to see her in the ICU and I was so scared. She was on a vent and was so pale. All of my hopes and dreams for my little girl felt like they were slipping away. Days went by and we got to talk Genetics and she gave us hope she said that she did not agree with Camplomeic Dyplasia and that Hailey had Femural Hypoplasia(which is a big difference from Camplomeic and not fetal just means she would have short legs) so that day we left with Huge smiles on our faces and tons of Hope that now all we needed to do was to get her off the vent and we could take our Hailey home. Hailey came off the vent and words can not describe how we felt. Was all this worry for nothing is our little girl coming home?? Hailey started having tempature spikes and was not maintaining it at all one minute she would be 102.7 the next 95.3. The doctors did an MRI on her to figure out what was going on. I will never ever forget getting the results from that MRI. My heart dropped and my whole body felt numb. Hailey had blood in her brain and also Hydrocephalus ( which is fluid built up around the ventracules) which is caused by strokes. My baby had a stroke and I was floored!! Is that even possible??? They also found a deformaty in her cervical spine which was putting pressure on her cord. They would have to do surgery sometime soon. On top of that she was not doing good off the vent poor weight gain because she was working so hard and staying awake all day and night because she was struggling so hard. Hailey was a fighter, you could see it in her eyes. That night we were transferred to Childrens of Dallas. I hated it there. I felt uncomfortable leaving Hailey so John and I stayed a lot of nights there. They put her in a neck brace ( which was awful) and pressured us on the surgery. We wanted to do some research before they just went in and messed with her spine. After talking to several doctors we realized that Hailey would not have a life. On a vent and would need a trach and several surgeries throughout life and a feeding tube. She would never walk, never talk, and because of the stroke never know who anyone but John and I were. (If she knew that, they said we would be lucky) We went back to Presby Dallas and made the final choice. It was what was best for Hailey and we had to take us out of it and see that she was suffering. I would suffer for the rest of my life or gladly take her place has long as she is ok. I miss her more and more each day and Have so many questions that I feel dont have answers. I cry over everything and feel like my heart is missing. I miss seeing her everyday and when I got to hold her the way she looked at me was amazing My little girl is now my angel and I dont know how to accept it. How do I move on without her? I feel so wrong and guilty. Why my little blue eyed baby girl. Maybe someday I figure it out. But that is my 15 page story of my little Angel. I just hopes she always knows the choice we made was out of love and nothing else. If anyone reads this Thank you for listening.

[marylouise]

Jenny & John, you're in my thoughts and prayers.
Hugs

[Mishelle Schmidt]

Hello Jenny,

I am so glad that you and John have joined NILMDTS forum. It is an amazing way to connect with others that are going through the same thing.
Wow, I have wondered since I met you all, what happened?? You all have been in my thoughts and prayers since I met you. And I will never forget your gorgeous Angel Hailey.
I hope your photos warm your hearts. You both are such special people.

Please call or email me anytime...I am always here for you!

[erinm]

I am so sorry about your loss of Hailey. Just reading your story brought back all the memories of last year. I too remember all the ultrasounds and unknowns.
You truely love your little girl and it shows in your writing. I wouldnt question anything that you did or didnt do. I wish there were words that took away the pain you feel. But do know Hailey knows you love her.

Erin
mom to Tyler 3/03/06

[Rita D. Conners]

Hi Hailey's Mom. Your post was long and I read every word of it. You and your husband have been through so much. I believe that God puts people in our lives for a reason. Hailey's life was short, but there was a reason for her to be here. She will always be a part of the two of you. I am sure she will be one of the five people you meet in Heaven. If you haven't read that book, I highly recommend it.
Sincerely,
Rita

[Lyssa Sauer]

I cant imagine what you went thru those months of pregnacy. The doctors had no idea something was wrong with Payton until he was born. Although my intuituion told me there was something wrong even after the ultrasound I pushed it aside. I still go thru the what if could we have and did we questions.I truly believe we are special chosen parents that are blessed with only a short time with our children just to let them go back to heaven. Nothing we can say is going to make this any easier but our ears are open and are hearts are with you. Your daughter was beautiful and now in heaven she is perfectly healthy and not suffering. I know that even that being said isnt comforting right now. Tomarrow it will be 3 months since my son was born and though only living 12 days I never seen as much as you did with your daughter so charish those memorys. Try and think of it this way you are not alone and neither is you baby girl she has thousand and millions of children up there with her to play with. I hope your heart fills some comfort here. Your feelings are normal hey I even one day was so mad at the lord that for about 3 hours I sat there and screamed at him letting him know I was mad for what hed done to me and my family. I felt pretty good after that, but I have mad peace with god since but dont get me wrong I still have my days with him. Take care my prayers are with you. Lyssa

[B Storm]

Hi! Hailey's mom,

What strength and courage you have. My love and prayers are with you and your family.

[Tasha Nicholls]

Jenny & John,

I have read both of your posts about your darling Hailey and your love and heartbreak. I am so very sorry for your loss. You were so brave to take her off life support so she wouldn't suffer anymore, even though you knew it would break your hearts. My thoughts and prayers are with you as you struggle through life without your beautiful little girl.

I'm sure she is watching over you and knows how very much she is loved... you are the best parents in the world!

*HUGS*

[calvin's mother]

Dear Hailey's Mommy,
I too know the heartache of having to take my Calvin off the vent..I kept saying 'just a little longer' untill my husband had to find the courage to say it was time..there are moments of that time that I still can not bear to recall and I don't know if I ever will..Just know that you and your husband are safe here with us..anything you are thinking or feeling is completely justified and we have all thought it or felt it too. Don't ever be afraid to write what you are feeling...sometimes it takes special places like this to let it all out..It is only other mothers and fathers like us (and our special earthly angel photographers) that will never judge your thoughts or ask the ignorant and obvious questions we find in the real world....Please remember amongst all this sadness you are allowed to celebrate Hailey..I know she has touched all the hearts in hear and many, many more...I like to think that all our Angels from here were waiting to meet your Hailey...And now I hope we can be here for you...God Bless

[Sandy "Sam" Puc']

To all of the NILMDTS parents,
I must say, that I could have never imagined that 2 years ago, the night I met Cheryl, Mike and Maddux, would be the beginning of this wonderful organization. I had no idea what a profound affect this work would have on so many people and what an amazing difference this would make in my life.
I want you all to know, that every story that you share is personal reminder to me, on how important this work is. Many times I feel so overwhelmed and just to tired to continue. When this happens, I come to this forum and read your posts. It is thru your great courage that I find strength to continue to serve NILMDTS.
Your children have touched so many lives and your stories not only give other parents courage and hope, you also remind thousands of photographers why this work is so important and for that, we all thank you.
You daughters and sons, are the "Heavenly strength" that we all need to continue on.
With warm regard,
Sandy Puc'
Cofounder NILMDTS

[linda]

Jenny,

I couldn't finish your thread with all these tears, but I got the jist of it and all I can say right now is hold close to your husband. The two of you will be eachothers pillars of hope and courage. I can't imagine the loss of a first child as my sweet Ethan was my second child but my friend who isn't on this site lost her first child a little girl and she can say that is what connected her and her husband. They had this fire of love between them that I can't describe. And 15 years later they have 3 more beautiful children but they will always remember their first Angel. Hailey is watch over her Mommy and Daddy and all she wants is for the two of you to hold tight to eachother and stay strong - she's missing you too but knows someday she'll be with her Mommy and Daddy.

You are a very brave Mommy and the desicions you had to make are heartbreaking. I'm so sorry you have had to go through so much. I will continue to pray for your family during this painful time. Sending love to Hailey today and praying for butterfly kisses to be sent your way from Miss Hailey. PS She is a beauty and I love her name!

[Amber Schmidt]

Prayers and love for you and your husband... I know that your beautiful angel Hailey will watch over you.

[anr0014]

I am so sorry to hear about Hailey. Our son Jake was also diagnosed with a type of skeletal dysplasia and some of Hailey's symptoms sound like Jake's (especially the part about her chest being smaller than her stomache). We have been working with the Cedars Sinai International Skeletal Dysplasia Registry, they are looking to identify the genes that cause these problems. I don't if you have made contact with them, but they have really amazing genetic counselors, researchers and doctors available to us.

Let me know if I can help you in any way... Only we know how awful this feels.

[Hailey's Mommy]

We just got some genetic work back and it confirmed that Hailey had Camplomeic Dyplasia. Now they will run our blood to find out if Dad or I carry that certain Gene. They think it was just a sparatic case and that we could have kids that are not effected but they have seen it happen again in the 2nd child If one of us carries this sox9 gene, there is a 1 in 4 chance this could happen over again. Today is a bad day for us for we just found out, but also makes us feel better because now we know what we are looking at. The doctors were right from the very first sonogram.

[jaiew]

Your story sounds similar to ours. We found out about Carey in our 20th week, and too had to make the decision to let him go after 9 short days. It was definitly the hardest thing we have ever had to do and I can only hope I will never have to do anything like it again. But I keep thinking that he is up there and when ever I need that little bit of strength, I look up and ask him for a little help to get through that moment. Sounds weird but it helps.:)

[George]

Hailey's Mommy & Daddy, I'm from the Plano,TX area too. Your story breaks my heart. Hailey was so precious and beautiful. Thank you for sharing your story--her life--with us.

The smallest feet leave the biggest imprints on our hearts.

[Hailey's Mommy]

Mommy loves you baby girl.... We miss you so much and think about you everyday...

[carissa13]

Jenny - I went back and read your first entry and my heart goes out to you and your husband. If we all knew the answer to our "whys", how would we really feel? So many times that word has come out of my month as I'm sure yours too.
I hope you are hanging in there the best you can, Hailey wants you to be at peace. You are blessed to have her in Heaven because you know there, you will get to spend eternity.
Are words enough, probably not but I hope you can find some comfort in knowing that I do think about you, your husband and your sweet little girl. I may not "know" you but I know how you feel. Your story has always touched my heart. ~ Carissa