The Woman in the Mirror

I found this on another Heart Mom's blog and I really like it.

The Woman in the Mirror
By Cheryl Veenstra


I saw an unfamiliar face in the mirror today. She caught my eye as I rushed to start the day. I hardly recognized this woman. What had changed in her eyes? She was no longer young, naive and viewing the world through rose-tinted glasses. What had caused the worry lines and thoughtful brow? How could she look so fragile and weary, yet also determined and strong? Around some corner on the road of life.......she had been shaken to the core of her very being.

There was a time when only tears and fears were reflected in those eyes. A doctor's unexpected words, the future suddenly uncertain......gray, shadowy images of the vague and scary concept of her child coming into the world as "disabled". An incredible journey began that caught her by surprise and would take her places she never thought she would go. The journey had been long at times and she had shed tears of pain and tears of joy. She'd had hopes and dreams dashed in the blink of an eye. She'd asked the question WHY? She'd had friends fail her and not know what to say or how to help. She'd seen her child suffer. She'd cried silent tears into her pillow at night. Tears of exhaustion and fear. Tears of helplessness and longing. Tears of thankfulness and relief. Tears that are choked back during the day, but are unleashed like floodwaters in the safety of the night to wash away any walls being built up to protect her heart. Nights of worry blurring into days of endless responsibility. But then slowly, but surely, her broken heart begins to heal and mend.

The same pity she had once felt as she watched a mother hold her 'special child' close was now looking back at her in the eyes of strangers. But a smile tugs at her lips as she suddenly realizes that now she knew the secret! The hard-fought, carefully guarded secret that was slowly revealed in the depths of her heart.....but only after the tears and anguish of the first days and weeks of this new life. The illusive truth that mothers of special children discover as they take their first faltering steps down this new path........It was okay. She and her child could survive, even thrive! It was not as grueling and unforgiving a road as she had imagined. The fog, confusion, despair and fear were being slowly replaced by peace, acceptance, contentment, joy and gratitude. A mother's unique, unconditional love changes the equation that may look hopeless and tough from those outside, looking in. She will fight for, live for and die for her child. These special children transform those around them into different people. Stronger people. Dare I say it......deeper people. Long gone are the days when all they had to worry about was where to vacation or what color mini-van to buy. They now struggle with life and death medical issues. They must answer their child's questions about life's unfairness and pain. What remaining strength and energy they have is spent trying to make their 'family life' as normal and happy as possible.

A twinkle returns to the eyes of the woman in the mirror as she takes a deep breath and remembers what she's been fighting for. How very worthwhile this journey has been! This child is an incredible gift and it is a privilege to be given the task of raising her. Her child is beautiful and perfect in her eyes. She longs for her child to be seen by the world through this filter of love, acceptance and potential. Could others take the time to see past this little girl's slower steps to see the life and love reflected in her eyes? Would her child be able to see herself through the filter of contentment that the woman has journeyed so long to discover?

Hope was rekindled as the woman's eyes grew brighter. The future remained uncertain, but the incredible, protective love she felt for her child threw a warm blanket over the cold, dark storm clouds that used to threaten her very soul. As she threw open the doors of her heart, she felt the warm sun on her face and she beheld a beautiful rainbow of intense beauty and unmistakable peace. Hope still comforts this woman who cries in the middle of the night. Love gets her through each day. Faith takes her hand and leads her around each corner and through each deep, dark valley. Peace soothes her heart as she relinquishes control of their destiny to One wiser and all knowing. Joy brings laughter and smiles to those tired eyes once again. Each day is recognized for the gift it is.

I gave that woman a smile as I left her at the mirror today. I'll see her again soon and I'm curious to see how she will continue to change and grow. She's not the same young, carefree woman she used to be, but that is okay. I like who she is becoming and I feel comfortable in her life. The sun is shining, the day is brand new, my child is humming and God is so good!

Been a while

I know it's been a long time since I had a post. I just had no idea what to say. This blog was for Hailey, and now she's no longer here. Friday was her 4 month Angelversary. This has been one of the hardest things to ever go through and I don't know how we are making it through, but we just are.
I still need to send out a TON of thank you cards, do you think it would still make a difference after 4 months? I used to be so on top of sending things out like that. Now it almost feels like nothing matters and I'm not worried if people are mad at me for not sending out a thank you card. I really am thankful, but the last thing I want to do is to write out cards because my daughter died. Why would I get motivated to write such cards? I'm hoping to be able to soon, it's just so hard to do right now.
Other than stressing over getting thank you cards out, everyday is a struggle, especially when I see a family with a baby girl. Or when that baby girl is smiling at me. I wish I had my baby girl to smile at me. She would have been 9 months old on the 18th. I miss her more than I can even explain in writing. I'm not even sure what this blog update is all about, I guess I just wanted to write about her and how much I miss her. So sorry if I'm kinda all over the place.
Since Hailey passed away I have met more parents with CHD babies and have seen 6 more babies pass away from their CHD. It's such a sad thing to see. I just wish these things never happened. It's not supposed to anyways.
We will be starting a fund raiser for Doernbecher Children's Hospital here in Portland, OR starting on Hailey's 9 month birthday. We would like to collect baby blankets and funds to create care packages for all the children in the PICU. We plan to deliver everything on Hailey's first Birthday. We are also wanting to donate a Graco "SweetPeace" swing (Hailey had hers in the PICU and everyone was so envious so we would like to get one for the babies in the PICU). So April 18-July18 we would like to see how much we can raise. I will post more information as the date comes up.

Sorry for the random post, hopefully more "cheerful" ones will be in the future!

Hailey's Story

It was just after Thanksgiving when I told my husband that I was feeling a little sick. I thought there is no way I'm pregnant, I've been on birth control. But a few days later, the pregnancy test told us something different! We were both surprised, but also VERY excited. We both wanted children but we didn't think we were ready. I guess Hailey told us that it was time, and we were ready.
Then on March 4th 2009 we were so excited because we were going to find out if we get to pick out blue or pink clothes. We found out we were having a little girl, but at the same time the UT was taking a very long time with the ultra sound focusing on the heart. She later left the room and then the Doctor came in to tell us what first time parents never want to hear. "There's something wrong with the baby's heart" I don't remember much after that through all the tears. But we were scheduled the next day to get a Echo done at Doernbecher Children's Hospital in Portland, OR.
The night before the Echo, we were hoping the doctor was wrong, and that she just couldn't see the heart very well. We were hoping at this next appointment they would say "Oh she made a mistake, there's nothing wrong". But instead they said "Your baby has Hypoplastic Left Heart Syndrome" We were devastated.  Then they gave us three options. The first one was to terminate the pregnancy (no way in hell!!) the next one was to give her "compassionate care" (basically take her home and let her pass away) again, no way!! And the third was a series of open heart surgeries. Of course we chose the open heart surgeries. We wanted to give Hailey every chance at life that we could. We are not the ones to determine whether she lives or dies.
After that day, I spent most of my free time researching HLHS and other families going through the same thing. I met a lot of wonderful families and many survivors from HLHS. So we had lots of hope for Hailey.
Then on July 17th we had our scheduled induction date and after 30 hours of labor, Hailey arrived via C-Section at 4:09 pm on July 18th 2009. She was 7 pounds 12 oz and 20.5 inches long. She was BEAUTIFUL!
The sad thing was I did not get to hold her. They rushed her away to start running tests and placing IVs. I finally got to see her about 2 hours later. I still didn't get to hold her. I could only look and rub her little hand. The next 2 days were just the same. No holding, just standing over her little bed and rubbing her hands and letting her grab onto our fingers. On the morning before her surgery on the 21st, we finally got to hold her! That was one of my happiest moments since arriving at the hospital. Then they came in to wheel her away to her first open heart surgery at just 3 days old.
Her surgery was very long! 14 hours to be exact. The outcome was not good. Besides the HLHS she also had a very leaky tricuspid valve and coronary fistulas (where the veins leading to her heart to her lungs were too small). She came out of surgery on a machine called ECMO. It's basically doing all of the work her heart would do, because her heart was not beating on it's own. The next day she went to the cath lab where they inserted 3 different stints into these veins that were too small. Then 6 days later, she was able to come off of the ECMO machine! We were so happy!
But she ended up spending 3 weeks on the ventilator because she was so sick. After that 3 weeks they took out her breathing tube but she only lasted a day without it. After 3 more failed attempts it was determined that Hailey needed to go back to have another open heart surgery to fix her leaking tricuspid valve (the reason she could not get off of the vent) So on August 21st she had her second surgery. This one went much better! No ECMO and only a week on the ventilator. She came off no problem. Then about a week later she had an infection in her gallbladder so she needed to be re intubated because of the infection she was having a hard time breathing. She ended up getting a drain in her gallbladder which had to be left in for 6 weeks. So 3 days later she again came off the vent.
But this fix to her valve wasn't good enough. It needed to be replaced. She remained on an IV of Milrinone to keep her heart beating strong while she waited to grow big enough to have that valve replaced. During this time, we really got to know Hailey and her personality. She absolutely hated mornings (just like her mom) and she loved to be held and get all of the attention from anyone who was in her room. If you didn't pay attention to her, she would let you know she was there! She also loved her little mobile, her favorite piece was a little blue horse. We had many fun days with her as we played and held her as we fell asleep.
Finally on November 24th Hailey was big enough to have her tricuspid valve replaced and also have her next stage in the HLHS series, the Glenn. It was another long surgery but she came out strong! No ECMO again. She had a beautiful color and she even opened her eyes to peek at us.
Three days after her surgery her chest was closed. That's when all the problems started. The night she got her chest closed is the first time she crashed. Her blood pressure just took a nose dive. They gave her CPR and got her back in only a minute or 2. But then it happened again 2 days later. Again they got her back, but it took a little bit longer. So they decide she needs to go to the cath lab to find out what's happening.
December 2nd we give Hailey a kiss and tell her how much we love her as they wheel her down to the cath lab. Just a simple procedure right? Well just after they insert the dye they see the problem, but then she crashes and they can't fix the problem while giving CPR. They worked on her for almost an hour. There was nothing else they could do, she was gone. A stint had come loose and was blocking the blood flow to her lungs. I wish they would have gone to cath lab a lot sooner. But there is nothing we can do about that now.
My husband and I waited in her room as they bring her back in, still doing CPR to keep her heart going until they can put her in my arms. They stopped CPR and placed her in my arms as her heart took it's last beat. I held her for hours telling her how much I loved her and how sorry I was that this is how the end had to happen. Then mu husband also held her four hours as we just cried until we couldn't cry any longer. We then put her back on her bed and the nurses took out all her lines and IVs. Then we gave her a bath and put her in her last outfit. We said our goodbyes and left that hospital for the last time, without our baby girl. It wasn't supposed to be this way. She was supposed to come home for Christmas. I guess she is always here with us now, only in spirit.
I love you so much Hailey. I would give anything to have you back. But I know you aren't in anymore pain. No more doctor visits, no more poking and prodding. And no more surgeries.  

Rest in peace my Angel. I can't wait until I get to hold you in my arms again.


Love,

Mommy

Hailey's Video

I made a video for Hailey, it hurt to watch but it does help.

http://www.youtube.com/watch?v=2LJY7gTHPcg

Rest in peace my beautiful Angel.

http://www.legacy.com/Columbian/Obituaries.asp?Page=Lifestory&PersonId=136938298

Funeral Info

Hailey's funeral will be Wednesday December 9th at Vancouver Funeral Chapel at 2pm. 110 E 12th St. And a viewing will be on december 8th from 10-5 at the chapel. There will also be a gathering after the funeral at the Dragonfly Cafe in the Clark County public service building at 4:30. Hailey's obituary will be posted in Sunday's Columbian. We would love to have every one of you there.

If you are reading this, you are invited. We would love to have all the people who care about her come and say goodbye.

I will update this blog when I am able to talk about everything that happened and what's going on in our crazy lives, hopefully in a couple of days.

I will post a link to her obituary too when I get one.

7/18/2009-12/2/2009

Hailey lost her fight to HLHS this afternoon. She did not make it through cath lab. Thank you for all your support and prayers.

Cath Lab

Hailey just now left to go to the Cath Lab. They are hoping to find a solution as to why she keeps crashing and why her sats are in the 60's. They are hoping to fix a problem within the pulmonary veins, I hope it's a quick fix! Please pray for her safety while in the cath lab. It's a risky procedure again, she's come this far and it would be horrible if the cath lab was the end. I know it wont be, but there's always that risk.
I will post an update as soon as we get one.

Another hard night

Hailey crashed again last night around 8:30pm. It was almost identical to saturday nights crash. They got her back again but she ended up starting to crash again around 5am. Luckily they caught the 5am one soon enough to treat her before they had to do CPR. They are trying many different options in their weaning methods to try and get her off the ventilator. Getting her off the vent is one of the most important things after the Glenn procedure, it will take a lot of pressure off the lungs. But Hailey is going at her own pace telling them she's not ready. Right now they have a nurse and respiratory therapist sitting right next to her bed 24/7 to watch her and make sure they are able to intervene if anything were to happen.
Basically Hailey's pulmonary arteries just need to get used to this new blood flow and stop collapsing when there is too much acid in the oxygen. I will post more updates as we get them.

Here are some of Hailey's beautiful pictures from Now I Lay Me Down To Sleep.

Rough Night

Hailey had a bad night last night. Around 2:30am sirens started going off like crazy. I was in the room with her and jumped up as they were giving her chest compressions and breathing for her. Her blood pressure dropped and her saturations were down to 30. Her pacemaker kept her heart rate at 100bpm, but she couldn't get it any higher on her own. After several minutes of this, she finally recovered. They believe it was pulmonary hypertension. So right now she is heavily sedated and no one is allowed to touch/stimulate her until she has recovered more. There was even talk about going back on ECMO if her saturations did not improve by this afternoon. She managed to get them back up just before the afternoon to avoid ECMO.
Please send out your thoughts and prayers that she continues to improve and do well. We want to take our girl home by Christmas.