Danielle's story

I was 36.5 weeks into my pregnancy.I went for a normal check-up.My husband Dan told my doctor that I needed an ultrasound because something wasn't right.He began to tell them how I was sick every morning and night.My back always hurt too.Atfirst they told me to go home and come back in a week but my husband kept telling him this was not right and he wanted an ultrasound done.So they told me fine and to go to the hospital at general.Now off we go to General Hospital for this. Got there and as time went on I began to get scared.The lady doing the ultrasound just stopped and called for my doctor to come in and look.He came in and then left the room.When he came back he said I needed to go up stairs and get checkinto the hospital.He then began to tell us he will be up in a minute we needed to talk.When he came into the room he said I needed to go to the city to have the baby.When they were looking the had noticed that there was only one leg,head too small for body,and an mass in her abdomen.I would fly out tonight or tommorrow morning.Boy was this alot to take in at once.I just looked at my husband and began tocry.Here we tried so hard to have this baby and now she has trouble. Well the next morning they flew me out to U.C.S.F in San Francisco California.It took us 2 hours flying and an hour of driving.It seemed liked forever.They wouldn't let Dan go with me so he had to drive which takes around 4 to 5 hours. I finally made it there and they took me to my room on the 15 th floor of the hospital.One of the docs there came and took me to this room for a high teck ultrasound.He said that the only thing he can find is the mass which only looks like fluid.I was so relieved. They took me back up-stairs to my room where I waited for my hubby to come.I looked out the window and prayed he would make it alright.Meanwhile the docs were tring to get ahold of my docs here to find out what to do.By 1:00am my room was full of family making sure things were alright.And of course for support. Morning came around and know word from docs back home.I asked them if I could just have the baby now because I was ready and I knew I was breach and would have a c-section already.They said they would try calling one more time and if know answer they would do an amnio.If things look good they would let me deliver her then.Time went on and no word still.So they came in and did an amnio.Around 3:30pmweds they came in and said tommorrow you guys will be proud parents to your little girl.I just couldn't belive this. Time came and at 11:02 am Thursday morning we had our little girl.Her name DANIELLE LLORA RENEE ADAMS 8LBS 15.5 OZ 19.5 INCHES LONG.They took herright away for her surgery on her hymen to relieve the fluid.Never got to see her before they took her. Later that day they came in and said things went well and we should be home in a couple of days.As time went on that day and night they began to worry when they couldn't get her off the vent.The next morning the peds doc ordered an echo.It was then that they found out the whole story behind her little body.
They came to my room and told us to sit on the bed.They began to tell us all the facts and wanted us to think about what we were going to do.They said it needed to bethought about because this has lead to many divorces with couples.All we could do ishold eachother and cry.How could this be happening to us?We wanted her so bad and now we don't know how long we will have with her.I needed some time alone so I went to the restroom.A few minutes later Dan came in and asked if I believe in angels.Isaid yes of course I do why?He then began to say how he saw an angel that looked like grannys angel on the wall we have.{You see a few years ago a close friend who wecalled granny passed away.A middle aged man at a store held the picture up and asked what I saw in this pic.I said clouds and he told me to look closer.Then I saw it an angel blowing a horn.A few hours later I got the call that she had passed away.So now that picture of an angel hangs on my wall and is known as grannys angel.}I knew it was granny and the Lord saying go head and do this we will watch over her.We wentdown the hall to were Danielle was and told her nurse to get the cardiologist.They came over to us and we told them to do the surgeries we wanted to do whatever it tookto save her.That night we had our little girl dedicated to the LORD.
May 3rd 1999: Danielle had her first open heart surgery called the Norwood stage 1.She came out of this okay but the docs say that the first 48 hours are the hardest for her body.If she makes it past this then she should do alright.My aunt who was watching my 8 year old brought him to see his baby sister.There were many tearsin the room that night.We all prayed she would do alright.Kris my son told the nurse that his sister was the best sister anyone could have and she was very pretty even with all the wires.While family all took turns seeing Danielle Kris made an angel for hissister to put on her bed.So after everyone saw her he went in and told her that he made an angel to help her .His little heart was there for his baby sister.After a few days we went home to get some things done and be with our son to help him through this time too.We went to see Danielle as often as we could.
After a few weeks had gone by and many tries getting her off the vent they were getting worried.I told them to just take it off because she will not breath if you don't make her do it.They said they could not just do that so they called an E.N.T to look at her.The fellow went down and looked at all the parts of her body for breathing and told the peds docs in the room that he has to agree with mother that there is nothing stopping her from breathing on her own.So he took the vent off of her and within minutes she was breathing for herself.She was finally exubated and for the first time in 3 weeks we got to see her without all the stuff going into her little mouth.
Everyday we call her to see how she is doing.We go see her everyother weekend if not more.I count the days before I get to see her again and bring her home with us.We had alot of ups and downs with the nurses and doctors.Before we can bring her home we have to let them put in a g-tube.They did a test and found out food was going to her lungs due to her parilized vocalcords. I tried to get them to just let her come home on a ng-tube but they wouldn't let her. 45 days in the hospital we are now getting to bring her home.We get to have ourlittle baby girl.What a drive that was knowing we are on our way to pick up Danielle.The next time we drive up this road she will be in this car. When we got there all we could do is hold her.We kissed her all over and told her how much we loved her.She was one very lucky little girl.How everyone was at home waiting to see her and how all of mckinleyville was praying for herWe got her all dressed up in a pink and white dress.We are really bring her home. Family was all waiting for us.They are all excited to see her.Taking turns holdingand hugging.Danielle doesn't relize yet how much she is loved by everyone.My family has been a mircle to my husband ,Danielle,kristopher,and I .For the next month we had so much fun playing with her.Enjoying everyminute we had.Danielle also had or should I say has a wounderful nurse who comes out to our home 1to 2 times a week if not more.She is a wouderful friend to talk to when you need someone.She has helped
with Danielles' recovery. After two weeks of being home danielle got into trouble.Her oxygen saturations got low and her doctor flew her back to the city.On saturday they did a cardiac cath and found out the valve in her heart was leaking more.This means she would need the Glenn done sooner then later.They told us they will be doing it soon like with in the next week or so.This was to much we just got her home and now were back.But for now we are going home and waiting to here from them.They said it will be a little more dangerous because she is only 2.5 months but she should do alright.By doing it now they are hoping to releave some pressure off the valve and make heart work alittle less.The one thing that is against her is that the pressures in lungs are still high.But we really don't have anyother option..so for now we will take her home and love her.
July 13 or so here we are again.fighting for her life again.We got there at 6:30 am and at 7:30 they came and took her out of my arms.My eyes began to fill with tears and my heart began to brake.Not knowing what lays ahead for her.It seems like forever when they came in and told us everything was going fine.They had to leave in the shunt from the norwood in.But other than that she was doing alright.When we saw her she was really swollen and all the memories came back from the first one.Back on the vent and all the wires and tubes.We held her hand and prayed somemore for her.We asked God to keep his hands on her and help her through this.Two days later the doctors sat us down and said if the swelling doesn't go down maybe we should think about undoing the glenn.Yes this means put her back the way she was.The surgeon then told us it was just to early for her to have the glenn and now it is just wait to see if her body will take to it.If they reverse it they will try in a month or so.We just looked at eachother and I told my husband if we put her through this she will not make it because look at how weak she is.He agreed and we told them we would not reverse it.We held her little fingers and told her to start peaing all the fluid out.She had to fight for us.Three days later after all this talking she started to lose a little bit of fluid but not much.This was a good sign. Daddy was really upset and left the room.i looked all over for him and I finally found him in the hospital church room where he wrote this:DEAR GOD , Thank you so much for helping our daughter Danielle through her first and second heart surgeries.As I'm sure you will know it is alot to endure for a new born.There have been many a times I've sat in the dark crying and praying for her hoping you are listening.There have also been alot of emotional ups and downs for my wife and I and through it all you've been there with us.For this I am gratefull.I know I have to be strong and supportive yet at times it seems so very difficult.Stress has always been part of my life,though none such as this.But ,I shall be strong,I shall endure,i will march on.There are many people in our family and community lending us support and there prayes,as well as many agencies and organizations for which I would like to give thanks too.I am greatfully indebted to all the doctors and nurses that have been taking care of Danielle.And Iam forever indebted to you for all you have done.As of today Danielle's life hangs in the balance.Her second operation on Tuesday morning well there were only a couple of complications which were taken care of.Though, now in her recovery she is having some complications.last night her oxygen sats was low as well as her hemiticrit and she had alot of swelling due to the operation and her medications.she recieved a blood transfussion late night to boost up her o2 sats and hemitricrit.This worked,as of this morning everything is fine except for her swelling and respiretory.Her swelling needs to come down for which they hope that the swelling goes down,her respiratory rate will go up.If not then they want to reverse the procedure.She is dependent on her right side of her to live which has a leaking value which will need to be repaired later.Please God,we need your love and help once again to give us comfort and guide and give strenght to Danielle through this most difficult time in her life.You have always been ther for us in the past PLEASE BLESS OUR LITTLE ANGLE.AMEN. FOREVER INDEBTED, DANIEL DION ADAMS
Us mommies are not the only ones who feel the pain.This came from a daddy's love for his child.We have to take time to help them out too, even though we need them too.So many times we look at them as support for us and not as if they need us too.I know I have made this mistake many times and dont relieze it until later that he might of needed me to be the strong one this time. We have been sitting here for a couple of days now just watching her, so thought we would take a break and go home to spend time with our son.He has been having a hard time with all this and with mommy and daddy gone so much.Each day we call her at least 3 or more times a day.
After 3 weeks we are finally out of the N.I.C.U.Maybe we are on our way home.All we need is to do is get her weaned off oxygen then maybe.A couple of weeks go by and she still isn't off .They told us to come down and they will try again.So my cousin and I went down to see if we could bring her home.When we got there she was still swollen but just as pretty as ever.We tried a couple of times and she still couldn't make it off her body just needs more time. So I went home to get oxygen in home.We left around 6:30 pm and was going to pick her up the next day or so .it is a 6 hour drive one way but I was going to give it my all to be back in the afternoon to bring her home.
The next morning I was getting ready and making my husband Dans lunch for work.When the phone rang.It was the call every parent hates to get from the hospital.Danielle was back into the I.C.U.At this time she was hour by hour and didn't know if she would make it.She had two chest tubes placed and back on vent.A nurse feed her laying flat and gave her 27 calorie formula which I told them if they give her that she will eat less because the thicker the more it fills you.So she will not eat every 3hours with it.But with a g-tube they will make them I guess.And we have to remember this is a baby who can't make any noise to say stop or help or anything. I just hung up the phone and just cried as I went to the bathroom to tell Dan.He just couldn't believe what I was telling him.He went off to work and called me every two hours to check on her.Of course I called the hospital every hour.I just could not drive there and see her in that room again.I didn't know what I would say or do so I waited a while before I went.Besides what could I do for her .I could hold her and kiss her but it wouldn't change what happened and I just couldn't see her this way again.
After a week in there she came out to the floor again.Now they want to do a Nesson
on her so this wouldn't happen again.At first I said no because we never had this problem with her and we felt it was the nurses fault this happened.We also found out if they get it too tight they wont ever eat again or too loose it doesn't fix the problem and there is a chance it can come undone.But in the end we had to do it or not bring her home with us.I felt I had no other option. After a week and a fever she went in to have it done.The surgery itself went great and now they just have to wean the vent off again.Maybe sometime soon we will be going home.
Soon after this surgery she got really sick with a strep infection.So I will not be bring her home this week.As the days gone by she was getting one infection after another.I was starting to think we were never going to bring her home.She was put on i.v meds for this and she would bounce back just to get another one. A couple of weeks went by and now they have talked about doing a cath.I was not happy because now I feel like they are doing everything to keep her there .But we said yes as long as they would transport her to our local hospital afterwards,for her to be closer to family.They at first said there would be no way but after telling them I had talked to local hospital already and they said they would take her they said alright but you need to sign papers.
My mom and her roommate and my friend drove me down to the city to sign the papers to get Danielle up here.We were so excited to see little Danny as mom says it.When we got to the hospital Danny had a smile on her face when she saw us.I just wanted to hold her and never put her down again.But I had to talk to the cardilogist first. They came in and took us to this meeting room where they told us to have a seat.As we began to talk they told us that they had done everything they could do for her.When they did the cath it showed that lungs were not good and things didn't look good for her.We asked about a heart transplant and they said there would be knowone who would do one on her because she would not get much use out of them and she would need a lungs with the heart and they just dont do this kind anymore.Then they went on to say why would you want to stop the inevidable or postpone death.We couldn't believe this.They were just giving up and there is nothing I can do.I couldn't stop the tears from coming.How do you deal with this.Then they asked where Dan was and I said work.Told
me to call him and he needs to come or they can't let Danielle go home.

The next morning Dan came in with me.The docs had told him everything they told me and we held eachother as we cried.They told us they wanted us to sign a D.N.R form which Dan said no and I told him to .It wasn't far for us to make her stay because we want her so bad.And at the same time I would do anything to get her home to her family.Dan still holds this against me at times.Tells me I gave up on her and he never.But really in my heart I never did.I always just said the Lord will do what he wants.Now looking back at times I feel maybe I did give up and then I feel maybe I did what I only could do. Five days later my aunt and I went down to bring her home.Our little girl came home on Sept.13 1999.We had our oxygen and sat monitor.Now we have our angel girl with us.Now we get to be mommy and daddy again .when we left they said she only had 3 to 4 weeks and if she made it pass then, the winter would do her in.But all I could do is hold her. It was really hard for me to sleep. Many people came by to see her and help in any way.My aunt stayed one night because I didn't have any sleep in days and really needed it.I was almost afraid to sleep.Felt as long as I watch her she will stay with us.Thank god for home nurse and family. After being home for a few days I had to ask Dan to help get things going so we could spend time with Danny.The home nurse I think or someone in that field made plans for the funural people to come to the house and talk to me.Of course this was the hardest thing I ever did.Dan would not help with this.I guess it was just too hard.Everyone said get this done and then you have the rest of the time to be with Danielle.I can say there will never be anything harder in my life then it was to do this.The guy even told his wife he didn't want to go to work because of him having to plan a funeral for a little baby who is only 4 months old.But I made it through this with help from family and home nurse. On Oct 17 1999 we had Danielle dedicated to the Lord at our church.and one week later she came off oxygen.It was at this time her life began to change.
In Febuary Danielle started her big steps in life.We started feeding and speech classes.And in april we started physical theraphy and early head start.Danielle is happy and a fun girl to be with.These are the things I dreamed about. It has been one year later and Danielle has caught up in speech and is eating only by mouth.Everyone just can't belive how well she is doing and how she just caught up so fast.Now she will be 2 in a few days.April 29. Everyday I look at her I feel so blessed.God gave us this wounderful child to love.She has taught me that even as a small baby you can still overcome the worst.I believe Danielle was brought to us for a reason.Through her my love for life has changed and my love for God has gotten stronger. This hasn't been an easy road and we still have a road to follow with more surgeries.It has been hard on us as a couple and as a family.My son who is 10 years old now would just start crying at school and ask the teacher why his sister has to die.He is getting better now but still has dreams about it.as far as my life and my husband we have our ups and downs I thank everyone who has helped with Danielle.With a special thanks to the good Lord above for keeping his hands on her.Thanks to family and friends,doctors,and all the agencies who helped.I will keep up dates .Thanks for reading. HUMBODLT HOME HEALTH ,OUR CHURCH HUMBOLDT CHILD CARE COUSIEL, REDWOOD COAST REGIONAL CENTER CALIFORNIA CHILDREN SEVERICES, EUREKA PEDS IN MCKINLEYVILLE AND EUREKA W/A SPIECAL THANKS TO DR.CODY WHO HAS ALWAYS BEEN THERE AND DR.JEFF FOR ALL GREAT WORK AND SUPPORT.U.C.S.F., EVERYONE IN HUMBOLT COUNTY FOR THEIR LOVE AND SUPPORT AND TO ANYONE I FORGOT.
Danielle is now a 10 year old who has beaten all the odds .She is full of energey and poeple can't believe she is a HLHS babie.She wants to do sport but because she gets winded easy we opt to not let her.We thank the Lord everyday for her.We tell her everyday how much we Love her and how special she is to us.She has alot of learning disablities but is working through them and has done really well in school this last year.Her health has been great with know sickness in a year now.She take just aspirin and Lisinoprol .She loves to travel and see new things.