Friday, November 14, 2008

Eliana's Story!

My name is Lyndsi. I am 28 years old and when I was only 23 I learned that my baby had Pulmonary Hypertension. Her name is Eliana. She is our middle child. Jake (my husband) and I have 3 children all together. Eliyah who is 9, Eliana who is 5 and Israel who is 4.

Here is our story: I was induced with Eliana because they knew there was something wrong with her heart, so they wanted to make sure that they had all the staff ready for her. She came into this world on her own time! They told us it usually takes many women a long time to deliver with petocin (sp?) so we sent home our family and told them we would call when we thought it was close. However, in true “Eliana style” she was out in no time, so it was NO EPIDURAL for mommy! Once she was born, she was very blue and having trouble breathing, so they let me get a quick glance and rushed her down to the Newborn ICU. A little later I got wheeled to my room and couldn’t wait to go down and see her. Jake (my husband) had left the hospital to get us some food so I called the nurse to take me down to the NICU. As the nurse and I entered the doors we were approached by 3 or 4 nurses/doctors ( I wasn’t sure at the moment) who told me I needed to go back to my room and I that I couldn’t see her yet. I was so upset, scared and confused, and to this day I still have no idea why I wasn’t able to see her then. I sobbed on my way back to my room and quickly called Jake and told him what had happened. After a few hours of waiting, they told Jake and I that we could go down and see her. I remember seeing her for the first time hooked up to every tube and every machine imaginable, including a ventilator to make her breathe. I was so afraid to touch her, but wanted so desperately to hold her.

In the coming days she was able to come off the breathing tube and only had oxygen, and eventually (after 2 weeks) we were able to take her home. Jake and I were terrified taking her home with oxygen tanks and tubing swirled through our home. I remember falling asleep every night with my hand on her chest so I could feel her breathe and sliding my had over her little nose to make sure I could feel her oxygen tubing was in place. She would breathe so fast (80 times per minute…try it and see how out of breath you feel) and couldn’t drink her bottles because she was working too hard to breathe. We used to add vegetable oil to her milk for extra calories because she wouldn’t gain weight.For five months we went back and forth to the doctors (cardiologist, pulmonologist, and pediatrician) to try and find what was wrong with our baby. The pulmonologist saw her and said, “Her lungs look cloudy on x-ray, but she should grow out of it. Bring her back in 3 months.” I knew we didn’t have 3 months.

Finally our cardiologist said that she thought she might know what she had, but she didn’t feel comfortable enough to treat it. She said we should consider going to Denver Children’s Hospital to get her looked at. I said “Send us NOW!” I remember driving into Denver feeling sick to the very core, so unsure and afraid of what would happen. All I knew was that they thought she had this disease called Pulmonary Hypertension. I didn’t know what it meant, but I knew we could either leave Denver with oral medication or an IV that they called a broviac in her chest that would be connected to a pump. I definitely didn’t want that for my baby, so we prayed for the best.The next day she would be seen for a consultation with the cardiologist and the day after that they would take her into surgery to have a procedure done called a cardiac catheterization.They told us that most kids do really well and were up and around the next day. I still so vividly remember laying her on the table and walking away….that has to be one of the scariest times of my life. I remember waiting for 4 hours in the waiting room wondering, and questioning God, “Why are we here? Why us? Why our baby?”

Finally the doctor came to talk to us and told us that she was very very sick. She needed the IV medication or she would die. She was so sick they weren’t able to take her off of life support and we needed to make a decision. Needless to say, Jake and I were absolutely devastated. I remember walking down the hallway of the hospital and falling to the floor crying. In a matter of two days we found out that our baby was dying from a disease that was fatal and if she could pull through this latest set back, her only hope for survival was an IV in her chest. What were we supposed to do? The next thing Jake and I did was pray, we prayed for God to show us what to do and we decided to go through with having the IV placed. We finally got to see our baby after this long procedure and I have to say, she looked nothing like Eliana. She was so swollen and again hooked up to every monitor, tube, machine imaginable. Day and night for 3 weeks we stayed by her side watching her gag on the breathing tube over and over and after 2 very scary tries, she was able to come off the breathing tube. During this time, we received a crash course on how to care for our child. We learned that this new line would be her life line and we had only 3-5 minutes to get her a new line if this one came out accidentally. Her pump could never be stopped or it would be fatal. I remember sitting in a conference room at the hospital with Jake, my mom, dad and little Eliyah (our oldest daughter, she was only 3 at the time) as a nurse taught us how to mix her medication. There were syringes, needles, masks, gloves, pumps, medication, saline and a book full of instructions. I felt like a zombie as I sat there listening, but all it sounded like to me was like the sound of the phone calls on Charlie Brown, “Wa wa wa wa wa.” That’s all I heard.

Slowly Eliana recovered and we were able to make our journey home with so much more than we got there with. Now we were even more terrified than when we first brought her home on oxygen. We had to begin a rigorous schedule of mixing meds, oral meds, oxygen, and dressing changes, complete with sterile drapes, gloves and masks.As we learned more about this disease from the internet, we felt so alone and so afraid, and we knew we had to kick our faith into full gear! Since then we have held on to God with all that we have and we have not let go!

Five years later we are still doing all the things we did in the beginning for Eliana’s care each and every day, and our arms are a little tired from holding on so tightly to God, but everyday He give us strength to go on and we do just that.We feel so blessed to have Eliana for another year. After 5 years of having PH you are considered a SURVIVOR! 5 years is the average life span of a PH patient after diagnosis, so her birthday this past July was a HUGE deal!



Melissa said...

I read your story and cried; I had so many similar thoughts and experiences with my daughter, Evelyn. She is soon to be 17 months old and has IPAH. She was diagnosed at 6 weeks and started on oral medication by the time she was 3 months old. Thank you for sharing your story. May God continue to carry us all . . .
Melissa, mother of Evelyn

Annette Markin said...

Hello Lyndsi! I just wanted to drop you a note to thank you for being part of the big blog day! Thank you for sharing Eliana's story. Please give her a hug, tell the rest of your family hello and be sure to take care of yourself.
much love