I have peaceful dreams now that Libs has passed over to Heaven. Here are two of my favorites that meant the world to me.
The first one, I was floating, there were hundreds of people I didn't know floating around me. Before I floated out of my body I was absolutely terrified because I didn't know where I was going, but once I saw the beautiful hall I felt nothing but pure bliss. I felt peace, love, calmness. It was a feeling I have never experienced awake and I do not think there are even appropriate words to explain it. I walked down the hall, there was a huge door, I started running towards it, I could feel that Libby was behind it. If I could just get in the door my heart would be full again. As I pushed the door, something stopped me, a voice told me that it was not my time yet and that I needed to go back. Although I felt disappointed nothing could stop my blissful state in the dream. After waking up I felt so happy, it felt so real. I will never forget what I saw and felt in that dream.
The second one was not long ago. I was struggling with missing Libby during this holiday season. God and I were in a special room, he told me I could rock Libby to sleep each night as long as I handed her back after she fell asleep. When I went to get Libby I saw a beautiful baby boy, that God told me was a miscarried baby of my friend. I held and rocked my dear Libs to sleep. It gave me the peace and comfort I needed.
Dreams like these keep me going, knowing that there is going to be a rainbow at the end of the tunnel when I get there. I don't need to hurry, Libs is in great hands.
12.19.2010
Life
Life is but a stopping place,
A pause in what's to be,
A resting place along the road
To sweet Eternity.
We all have different journeys,
Different paths along the way,
We all are meant to learn some things
But never meant to stay....
Our destination is a place
Far greater than we know.
For some, the journey's quicker,
For some, the journey's slow.
And when the journey finally ends,
We'll claim a great reward
And find an everlasting peace,
Together with the Lord.
12.15.2010
Memory #4
Halloween is my favorite time of the year. We had started new traditions with Liberty. We always went to the same pumpkin patch in Sauvie Island. A very beautiful place to make memories. She loved the bumpy wagon rides to pick the best pumpkins we could find, always ending the trip with a super sized frosted sugar cookie. Every year Libby would get a white pumpkin and I would carve her name into it. She had a blast trick or treating each year in downtown Tigard. Halloween was an exciting time for all of us. Mommy always dressed up and acted like an excited child with her :) Libs last Halloween was probably the happiest I had ever seen her. We were still at the Ronald McDonald House of Palo Alto, we went to the mall across the street, then to a small neighborhood in the area trick or treating. Mommy had bought a snow white costume, but Libs cried whenever she seen it. Running out of time for shopping for a costume, we didn't know if we would even participate in Halloween activities, and I wasn't really pushing the idea considering her immune system issues. The Ronald McDonald House had a room set up of costumes for the children in the house. Lib went down one morning and to our complete surprise she picked a pirate costume. I didn't know how she even knew what a pirate was. She started talking about pirates and didn't want to take the costume off. That costume made her so happy. We had a blast that night, we were out pretty late for a 4 year old but she didn't want to stop, and with her smile how could I say no :)
Libby fell asleep quickly that night. The next morning she sat up and ran to her bag of candy as fast as she could, she was still happy about the night before, but she looked like a zombie :) she had a Halloween hangover. Liberty didn't eat by mouth at this point but she was still thrilled because our Halloween wasn't about eating candy, it was about dressing up, having fun, and laughing our heads off.
Libby fell asleep quickly that night. The next morning she sat up and ran to her bag of candy as fast as she could, she was still happy about the night before, but she looked like a zombie :) she had a Halloween hangover. Liberty didn't eat by mouth at this point but she was still thrilled because our Halloween wasn't about eating candy, it was about dressing up, having fun, and laughing our heads off.
12.03.2010
11.14.2010
I'm free
Don't grieve for me, for now I'm free,
I'm following the path God has laid you see.
I took his hand when I heard his call.
I turned my back and left it all.
I could not stay another day
To laugh, to love, to work or play.
Tasks left undone must stay that way
I found the peace at the close of day.
If my parting has left a void
Then fill it with remembered joys-
A friendship shared, a laugh, a kiss
Oh yes, these things I too will miss.
Be not burdened with times of sorrow
I wish you the sunshine of tomorrow.
My life's been full I savored much,
Good friends, good times, a loved one's touch.
Perhaps my time seemed all too brief
Don't lengthen it now with undue grief
Lift up your hearts, and peace to thee-
God wanted me now, he set me free.
I'm following the path God has laid you see.
I took his hand when I heard his call.
I turned my back and left it all.
I could not stay another day
To laugh, to love, to work or play.
Tasks left undone must stay that way
I found the peace at the close of day.
If my parting has left a void
Then fill it with remembered joys-
A friendship shared, a laugh, a kiss
Oh yes, these things I too will miss.
Be not burdened with times of sorrow
I wish you the sunshine of tomorrow.
My life's been full I savored much,
Good friends, good times, a loved one's touch.
Perhaps my time seemed all too brief
Don't lengthen it now with undue grief
Lift up your hearts, and peace to thee-
God wanted me now, he set me free.
Linda Jo Jackson
11.07.2010
She is Gone
You can shed tears that she is gone or
you can smile because she has lived.
You can close your eyes and pray that she'll come back or
you can open your eyes and see all she's left.
Your heart can be empty because you can't see her or
you can be full of the love you shared.
You can turn your back on tomorrow and live yesterday or
you can be happy for tomorrow because of yesterday.
You can remember her and only that she is gone or
you can cherish her memory and let it live on.
You can cry and close your mind, be empty and turn your back or
you can do what she'd want: smile, open your eyes, love and go on.My sister emailed this to me. I keep it in my inbox. It reminds me how blessed I was to have Libby, and how she helped me grow as a person.
11.06.2010
11.03.2010
Memory #3
Some children will never learn to talk, but their personality still shines right through. If they do learn to talk, that personality is validated. This memory is about Libs journey into becoming a non stop chatter :)
Libby was 4 years old, in the hospital on the regular floor, following an open heart surgery. At this point she would only speak very few words. We had received a surgery package filled with goodies from Saving Little Hearts. Libby reached into the bag and pulled out a red foam heart, she excitedly said "Heart". In shock we asked her "how do you know that?", In a matter of fact tone she replied "I know my heart!". From that moment forward she never stopped talking. She had known her numbers, shapes, animals. Her knowledge was extremely impressive. From the day Liberty was born I had explained everything possible to her. Her medications and why she needed them. Where we were going or what we were doing. I even explained feelings to her. I started that at day one because I wanted her to know that it was okay to feel angry and sad about her medical treatments but that we have to find healthy outlets for it. I explained feelings very often. I may have over done it but I think her knowledge made her the considerate person she was. Through words her personality was confirmed and I spent hours upon hours laughing each day. I definitely think she is voted as funniest Angel above.
Libby was 4 years old, in the hospital on the regular floor, following an open heart surgery. At this point she would only speak very few words. We had received a surgery package filled with goodies from Saving Little Hearts. Libby reached into the bag and pulled out a red foam heart, she excitedly said "Heart". In shock we asked her "how do you know that?", In a matter of fact tone she replied "I know my heart!". From that moment forward she never stopped talking. She had known her numbers, shapes, animals. Her knowledge was extremely impressive. From the day Liberty was born I had explained everything possible to her. Her medications and why she needed them. Where we were going or what we were doing. I even explained feelings to her. I started that at day one because I wanted her to know that it was okay to feel angry and sad about her medical treatments but that we have to find healthy outlets for it. I explained feelings very often. I may have over done it but I think her knowledge made her the considerate person she was. Through words her personality was confirmed and I spent hours upon hours laughing each day. I definitely think she is voted as funniest Angel above.
10.16.2010
10.14.2010
Memory #2
If there is one thing that repeatedly pops up in our memories with Liberty, it would be Pluto. He meant the world to her. It all started when she was 3, we were on our Disneyland vacation. I asked Mike to take Libby and buy a gift for her. Mike decided to let her down to pick out her own toy as she was not yet verbal. Immediately she picked a stuffed Pluto. It was love at first sight. She would rub her face against his, she was content to cuddle him. He kept her busy too as we would often hear "Plutoooo, no barking". Her Daddy made her day by setting up a private meeting with Pluto :) Pluto was always by her side, making her feel safe and happy. Thank you Pluto for being Libs best friend and giving her that comfort.
10.09.2010
10.07.2010
Memory #1
Liberty would crawl into my bed in the morning, if she wasn't already there :) She would do it quietly as possible, not wanting to wake me. She would make sure I was covered up properly. Then she would lay there in complete silence staring at my face. To a child as soon as their eyes open, their bodies are up and running and ready to go, us adults not so much. As soon as my eyes flickered open she was all smiles and giggles and ready to go. I'll never forget the look of excitement on her face every single morning. Over time I did learn that I had to be awake the instant my eyes opened so I started to keep them closed for about 10 minutes to give me time to wake up lol. This is my favorite memory because first, it shows how respectful my daughter was, second, it shows that she looked forward to life with me every day, and third, I can't think of this memory without picturing that beautiful, smiling face of hers.
10.06.2010
There will be a tomorrow that exists without me. And I
know that. When that day arrives, I want this world to have seen greater beauty
because I existed. I want my life to have meant something. I want this world
to be brighter. I want this world to be happier. I want people to have smiled
more and to have laughed more because I've spent time here. I want others to
have seen and felt the uniqueness of my spirit. And if I accomplish that, when
my soul does move on and my gift stays here and makes just one ripple, I will
look down and I will smile. I will smile wide. ♥
Wings
Libs received her permanent Angel Wings February 20th, 2010, 10 days shy of her 5th birthday. I'm not going to go into great detail, I relive that heartbreaking day every single morning when I wake up and realize my daughter isn't laying next to me. I want this Blog to be more positive, more about the optimism that Lib and I shared throughout those years. I live everyday with a Libby sized hole in my heart I believe
1. She's with GOD
2. She's Happy
3. She's out of pain
4. She will never stop loving me
and that is all I need to know, to be okay.
I will never forget the love and laughter she has brought to my life. God bless her for everything she was, and everything she still is.
1. She's with GOD
2. She's Happy
3. She's out of pain
4. She will never stop loving me
and that is all I need to know, to be okay.
I will never forget the love and laughter she has brought to my life. God bless her for everything she was, and everything she still is.
9.22.2010
Learning to Talk
Written November 2, 2009
Libertys open heart surgery #3 was July 1st. The surgery itself went excellent. The 3 months in the hospital afterwards not so well. After Libertys surgery, when I talked to the surgeon and he told me that it was easy for him to do his work and he looked forward to doing her final fix surgery. I cried, and I cried.
Liberty came off the breathing machine July 4th, doing absolutely great. The first week was awesome, then very quickly, things weren't right, Libby started having fevers, and became very ill. They ran two antibiotics for a month. One day Libby would seem okay, the next on her death bed. There were so many ups and downs. Her spirit never ever got down though. She had to have 20 pokes a day, needles going through her foot, needles bending in half after hitting her bones, needles having to be poked into her little thumbs, trying to find any vein they could, and she never had fear, never sulked. In fact, Libby laughed and played and went outside in the sun just hours before she stopped breathing when the infection in her heart took its toll on her and brought her body down. You see that's what is amazing, infection roaring through her body and trying to bring her down, and mentally and emotionally she wouldn't let it. That is what keeps our Libby so strong, she has a love for life, four years old but she is wise beyond her years and appreciates what she has. This year I have seen Libby almost pass away three times, two of the times I seen her fight hard, give her all to continue on with her little life. One time was different, dark black little girl, shaking in bed, striving to breathe, just not able to get the oxygen she needed. The only sound in the room was Libs heavy gasping. It was absolutely horrifying, It is then that in my prayers I prayed to God to please take her and end her suffering or give her back to me. I wasn't angry with God, I hadn't given up on Lib. I just wanted to let God know that I could be selfless enough to let her go if that was the only way she could be in peace. The very next morning during a procedure to put in a iv line, she came back breathing better than ever. They don't know if they popped open a lung with the breathing machine, or what made the change, but Libby was finally Okay.
A couple GI and immunology issues have come up, and little things here and there. Nothing that is going to damper her living her life happily.
Lib started talking during her hospital stay. I knew Libby could talk, but I had no idea about the depths of her knowledge. We were sitting in her bed opening a package from saving little hearts and she pulled out a foam heart, and she yelled "Heart" we said how do you know that, her reply "I know my heart!". From that moment forward, she named every shape, every farm and zoo animal. She talked about any and everything. She would help the nurses with everything and always told them Thank you, she loved talking about what she could do to be a good girl. She is currently trying her hardest to learn her alphabet, she sings the song, but she wants to point to every letter in books, on signs, anywhere and have you tell her what they are. She enjoys drawing shapes, writing numbers. She enjoys Super Why, which is a show on PBS that teaches children to read. She puts all her energy into learning, and I couldn't be more proud. I have explained everything to Libby since she was born, even her medications, I wanted her to know everything, and I think it shows =) Our favorite Dr. came in a couple days before we left, and he said I have to hear Liberty talk, she chatted away to him and his face lit up and he said "You guys told us you have always known she could talk but has chosen not to, and something broke through to her and she wants to communicate now, Amazing" Same Dr. That 3 weeks earlier came into our room, sad faced, and said bluntly "I swear we are here to help kids, not make them sicker" and ran off quickly. I am glad he got to see Liberty thriving because they need to see that what they do is Absolutely Amazing! They contribute more than I think they will ever know. Libby has a part of every surgeon, doctor, nurse in her. It's because of them that she is able to thrive and be where she is today.
We've had to change our lives around this year, we had to uproot our home, we have had to take chances, we have had our hearts broken, we have had to find strength, hold onto hope, know our faith, endure the lows, enjoy the highs, and no one ever says its easy but It is definitely worth it. I get to look into Libs smiling blue eyes as she asks for a "snuggle buggle", I get to see her sing and dance, she has a fun, hilarious personality and makes me laugh every single day. Her little heart is so trusting and loving even after what she goes through, but she needs or wants no sympathy, she just enjoys life plain and simple.
Libertys open heart surgery #3 was July 1st. The surgery itself went excellent. The 3 months in the hospital afterwards not so well. After Libertys surgery, when I talked to the surgeon and he told me that it was easy for him to do his work and he looked forward to doing her final fix surgery. I cried, and I cried.
Liberty came off the breathing machine July 4th, doing absolutely great. The first week was awesome, then very quickly, things weren't right, Libby started having fevers, and became very ill. They ran two antibiotics for a month. One day Libby would seem okay, the next on her death bed. There were so many ups and downs. Her spirit never ever got down though. She had to have 20 pokes a day, needles going through her foot, needles bending in half after hitting her bones, needles having to be poked into her little thumbs, trying to find any vein they could, and she never had fear, never sulked. In fact, Libby laughed and played and went outside in the sun just hours before she stopped breathing when the infection in her heart took its toll on her and brought her body down. You see that's what is amazing, infection roaring through her body and trying to bring her down, and mentally and emotionally she wouldn't let it. That is what keeps our Libby so strong, she has a love for life, four years old but she is wise beyond her years and appreciates what she has. This year I have seen Libby almost pass away three times, two of the times I seen her fight hard, give her all to continue on with her little life. One time was different, dark black little girl, shaking in bed, striving to breathe, just not able to get the oxygen she needed. The only sound in the room was Libs heavy gasping. It was absolutely horrifying, It is then that in my prayers I prayed to God to please take her and end her suffering or give her back to me. I wasn't angry with God, I hadn't given up on Lib. I just wanted to let God know that I could be selfless enough to let her go if that was the only way she could be in peace. The very next morning during a procedure to put in a iv line, she came back breathing better than ever. They don't know if they popped open a lung with the breathing machine, or what made the change, but Libby was finally Okay.
A couple GI and immunology issues have come up, and little things here and there. Nothing that is going to damper her living her life happily.
Lib started talking during her hospital stay. I knew Libby could talk, but I had no idea about the depths of her knowledge. We were sitting in her bed opening a package from saving little hearts and she pulled out a foam heart, and she yelled "Heart" we said how do you know that, her reply "I know my heart!". From that moment forward, she named every shape, every farm and zoo animal. She talked about any and everything. She would help the nurses with everything and always told them Thank you, she loved talking about what she could do to be a good girl. She is currently trying her hardest to learn her alphabet, she sings the song, but she wants to point to every letter in books, on signs, anywhere and have you tell her what they are. She enjoys drawing shapes, writing numbers. She enjoys Super Why, which is a show on PBS that teaches children to read. She puts all her energy into learning, and I couldn't be more proud. I have explained everything to Libby since she was born, even her medications, I wanted her to know everything, and I think it shows =) Our favorite Dr. came in a couple days before we left, and he said I have to hear Liberty talk, she chatted away to him and his face lit up and he said "You guys told us you have always known she could talk but has chosen not to, and something broke through to her and she wants to communicate now, Amazing" Same Dr. That 3 weeks earlier came into our room, sad faced, and said bluntly "I swear we are here to help kids, not make them sicker" and ran off quickly. I am glad he got to see Liberty thriving because they need to see that what they do is Absolutely Amazing! They contribute more than I think they will ever know. Libby has a part of every surgeon, doctor, nurse in her. It's because of them that she is able to thrive and be where she is today.
We've had to change our lives around this year, we had to uproot our home, we have had to take chances, we have had our hearts broken, we have had to find strength, hold onto hope, know our faith, endure the lows, enjoy the highs, and no one ever says its easy but It is definitely worth it. I get to look into Libs smiling blue eyes as she asks for a "snuggle buggle", I get to see her sing and dance, she has a fun, hilarious personality and makes me laugh every single day. Her little heart is so trusting and loving even after what she goes through, but she needs or wants no sympathy, she just enjoys life plain and simple.
9.21.2010
Sleepless nights
Written March 1, 2009
In late December 2005 Libertys breathing started getting worse, I wished with all my heart that it would only be a minor cold and that it would blink by. I didn't want her to endure another hospital stay, I didn't want her to experience poke after poke, sleepless nights, and fear. I could no longer keep her comfortable at home, she was admitted to the hospital. That is when she got put on continious oxygen and is currently still on it. This stay was much different than the first, Liberty found a friend in every nurse, volunteer, and doctor that stepped into her hospital door. She was grins and giggles non stop, she thought it was absolutely great that so many people oohed and ahhed over her. Her happiness made it easier to make the hospital our temporary home. Spending months in a pediatric intensive care unit is emotionally draining. You will see pain, suffering, heart break, children pass on, and somehow with all that happening around you, you have to hold onto your hope and strength for your own child. You have to make sure you keep your head and heart together so you can be your childs rock.
During this time is when Libby said her first word. I left her in the PICU with the nurses to go get myself lunch one day. When I got back she was at the front desk greeting people. The nurses told me she asked everyone that went by "Momma?". My heart was jumping with excitement but my mind thought they are crazy, my baby doesn't even utter a sound (having had a paralyzed vocal cord for so long). I asked Mike about it, he said yes I've heard her ask for you a couple times when you are not in the room. Then later that night I heard the best thing I could ever hear, my baby saying momma.
Liberty was diagnosed with RSV, after many weeks of respiratory therapy they could not understand why she wasn't showing signs of improvement. Upon a closer look they realized Libertys fake piece from her heart to lung had completely disappeared. How she was alive was beyond anything the cardiologist had ever seen. Her scar tissue somehow helped with the blood flow to keep her alive. The surgeon stressed to us greatly that it was very unlikely Libby would survive. He assumed once he opened her up there would be no way for him to hook up the bypass, he said if this indeed were true Liberty would pass away immediately. Then we had to experience the worse thing I think we go through, handing our baby and her life over to those wonderful strangers. They rolled our sweet baby down the hall, she sat in the crib smiling, giggling, playing, the doctors were absolutely amazed with her. God held our babies hand and she survived the miraculous surgery. Within a couple of days Liberty was up and about, enjoying life, like nothing in the world could ever bring her spirits down.
We had a few bumps with the recovery, damaged left lung issues, wound infections, but on Libertys 1st birthday, March 2, 2006 we brought Lib home once again. She was on C-PAP at home with no sedation and no nurse. They usually do not let a baby leave the picu directly on C-PAP but they knew we did 99% of her medical care in the room, and that we would be fine at home. It was a rough road with the C-PAP, Mike and I got maybe 1 hour of sleep per night and that was in ten minute increments, but having our pride and joy at home was more than worth it. We could never feel bad for ourselves, we know that we are blessed to have Libby with us. We know we are absolutely blessed that she can walk, talk, play, sing. I watch Liberty when she's sleeping, I have to reassure myself often that her little chest is rising and falling, and with every single breath I see I thank God for letting me keep my Angel. She makes everyday brighter. She's the sunshine in my life.
In late December 2005 Libertys breathing started getting worse, I wished with all my heart that it would only be a minor cold and that it would blink by. I didn't want her to endure another hospital stay, I didn't want her to experience poke after poke, sleepless nights, and fear. I could no longer keep her comfortable at home, she was admitted to the hospital. That is when she got put on continious oxygen and is currently still on it. This stay was much different than the first, Liberty found a friend in every nurse, volunteer, and doctor that stepped into her hospital door. She was grins and giggles non stop, she thought it was absolutely great that so many people oohed and ahhed over her. Her happiness made it easier to make the hospital our temporary home. Spending months in a pediatric intensive care unit is emotionally draining. You will see pain, suffering, heart break, children pass on, and somehow with all that happening around you, you have to hold onto your hope and strength for your own child. You have to make sure you keep your head and heart together so you can be your childs rock.
During this time is when Libby said her first word. I left her in the PICU with the nurses to go get myself lunch one day. When I got back she was at the front desk greeting people. The nurses told me she asked everyone that went by "Momma?". My heart was jumping with excitement but my mind thought they are crazy, my baby doesn't even utter a sound (having had a paralyzed vocal cord for so long). I asked Mike about it, he said yes I've heard her ask for you a couple times when you are not in the room. Then later that night I heard the best thing I could ever hear, my baby saying momma.
Liberty was diagnosed with RSV, after many weeks of respiratory therapy they could not understand why she wasn't showing signs of improvement. Upon a closer look they realized Libertys fake piece from her heart to lung had completely disappeared. How she was alive was beyond anything the cardiologist had ever seen. Her scar tissue somehow helped with the blood flow to keep her alive. The surgeon stressed to us greatly that it was very unlikely Libby would survive. He assumed once he opened her up there would be no way for him to hook up the bypass, he said if this indeed were true Liberty would pass away immediately. Then we had to experience the worse thing I think we go through, handing our baby and her life over to those wonderful strangers. They rolled our sweet baby down the hall, she sat in the crib smiling, giggling, playing, the doctors were absolutely amazed with her. God held our babies hand and she survived the miraculous surgery. Within a couple of days Liberty was up and about, enjoying life, like nothing in the world could ever bring her spirits down.
We had a few bumps with the recovery, damaged left lung issues, wound infections, but on Libertys 1st birthday, March 2, 2006 we brought Lib home once again. She was on C-PAP at home with no sedation and no nurse. They usually do not let a baby leave the picu directly on C-PAP but they knew we did 99% of her medical care in the room, and that we would be fine at home. It was a rough road with the C-PAP, Mike and I got maybe 1 hour of sleep per night and that was in ten minute increments, but having our pride and joy at home was more than worth it. We could never feel bad for ourselves, we know that we are blessed to have Libby with us. We know we are absolutely blessed that she can walk, talk, play, sing. I watch Liberty when she's sleeping, I have to reassure myself often that her little chest is rising and falling, and with every single breath I see I thank God for letting me keep my Angel. She makes everyday brighter. She's the sunshine in my life.
The first year
Written February 22, 2009
Liberty Margaret Ash was born March 2, 2005, at OHSU hospital in Portland, Oregon. She was born with birth defects. The most severe being a congenital heart defect of tetralogy of fallot, pulmonary atresia, vsd's, mapca's, asd's, and av canal defect. She was also born with spina bifida occulta, rib duplication, unilateral right kidney and hearing only in her left ear.
After spending 10 days in the neonatal ICU Libby was released to go home. After only two weeks at home she was life flighted back to OHSU hospital due to severe reflux and aspiration. We then spent one month in the hospital waiting for Libbys first open heart surgery.
May 11th 2005 they took my tiny 2 month old baby into surgery. They placed a right ventricle to pulmonary artery conduit. It took several hours. She was intubated and on heavy medication to keep her pain-free and asleep. They kept her little body cold as ice, so her little heart wouldn't have to work as hard, and to give it time to accept the changes made to it. The nurses and doctors heavily suggested we go to the ronald mcdonald house to get a full night of rest, in the morning after extubation she would really need us. We headed to the ronald mcdonald house (they are so wonderful!). We set our alarm for 6 am, we would be back to Doernbecher for the 7 am early morning rounds. We fell asleep immediately, a month of hospital living is exhausting, you do get use to it after a few months, when it becomes your home. We slept through the alarm, but we did not sleep through the phone call.
The phone call that said to please hurry to the hospital, they couldn't tell us anything but we needed to be there. Mike had took the call and I was groggy, about 3 mins later and half way there, I was finally waking up. I asked Mike "Why are we running full speed for rounds?", he replied "the nurses called, something happened". I was definitely scared but had not a clue what was happening. As we were getting on the elevator, there was her heart surgeon, just from the look on his face I could tell It would be the most horrifying thing I could ever hear. He then said "I am so sorry, the resus team is with her now". That is the moment I learned what a true broken heart feels like. Riding up that elevator felt like it took days. We got to the ICU desk and there were doctors, nurses, and counselors waiting for us. We were told we could not go and be with her because they were still doing CPR and in the process of getting ECMO brought up. So I sat in a tiny little room, too broken to speak a word, feeling like my world was ending. They cut Libbys little chest open and massaged her heart until they could get her on the bypass machine, how very thankful I am to those nurses and doctors, they saved my daughter. After fifty minutes of CPR they came to tell us that they would clean her up and we could go be with her. We then found out that the ECMO machine did not mean she would live, that they would try to get her off of it, but it was up to her heart to start again or not. They said we would know by seven days. I remember feeling like those days would pass by unbearably slow, but to my surprise they flew by and I never gave up hope or faith, not even for a second. Three days later Libertys little heart decided to take over. We had obstacles placed in our paths every inch of the way, but we knew with our faith and love we could push past anything. Liberty taught us the meaning of strength and courage.
It took a few days but eventually Libby started waking up, I remember how excited and overwhelmed with happiness I would get by just seeing her flutter her finger or a blink of her eye. I learned true appreciation for life and love. I will never take a moment of my life or hers for granted.
We spent an additional two months in the ICU after the surgery but it flew by as I busied myself with making sure I got to be involved with as much of her care as I could. We brought Libby to our new home in Tigard, Oregon a few days before July 4, 2005.
The first week she was very tense, you could tell she questioned every move we made. She hadn't known the type of life a baby should. Quickly she fell in love with everything. The fear in her face was replaced with happiness, excitement, and wonder. I was amazed at how not only she overcame everything she had endured but her face was always lit up with huge smiles.
We then enjoyed many months at home, her learning baby things, and I learning not only what it's like to be a new mother, but a chd mother. A life filled to the brim with love, hope, faith and always a touch of fear.
Liberty Margaret Ash was born March 2, 2005, at OHSU hospital in Portland, Oregon. She was born with birth defects. The most severe being a congenital heart defect of tetralogy of fallot, pulmonary atresia, vsd's, mapca's, asd's, and av canal defect. She was also born with spina bifida occulta, rib duplication, unilateral right kidney and hearing only in her left ear.
After spending 10 days in the neonatal ICU Libby was released to go home. After only two weeks at home she was life flighted back to OHSU hospital due to severe reflux and aspiration. We then spent one month in the hospital waiting for Libbys first open heart surgery.
May 11th 2005 they took my tiny 2 month old baby into surgery. They placed a right ventricle to pulmonary artery conduit. It took several hours. She was intubated and on heavy medication to keep her pain-free and asleep. They kept her little body cold as ice, so her little heart wouldn't have to work as hard, and to give it time to accept the changes made to it. The nurses and doctors heavily suggested we go to the ronald mcdonald house to get a full night of rest, in the morning after extubation she would really need us. We headed to the ronald mcdonald house (they are so wonderful!). We set our alarm for 6 am, we would be back to Doernbecher for the 7 am early morning rounds. We fell asleep immediately, a month of hospital living is exhausting, you do get use to it after a few months, when it becomes your home. We slept through the alarm, but we did not sleep through the phone call.
The phone call that said to please hurry to the hospital, they couldn't tell us anything but we needed to be there. Mike had took the call and I was groggy, about 3 mins later and half way there, I was finally waking up. I asked Mike "Why are we running full speed for rounds?", he replied "the nurses called, something happened". I was definitely scared but had not a clue what was happening. As we were getting on the elevator, there was her heart surgeon, just from the look on his face I could tell It would be the most horrifying thing I could ever hear. He then said "I am so sorry, the resus team is with her now". That is the moment I learned what a true broken heart feels like. Riding up that elevator felt like it took days. We got to the ICU desk and there were doctors, nurses, and counselors waiting for us. We were told we could not go and be with her because they were still doing CPR and in the process of getting ECMO brought up. So I sat in a tiny little room, too broken to speak a word, feeling like my world was ending. They cut Libbys little chest open and massaged her heart until they could get her on the bypass machine, how very thankful I am to those nurses and doctors, they saved my daughter. After fifty minutes of CPR they came to tell us that they would clean her up and we could go be with her. We then found out that the ECMO machine did not mean she would live, that they would try to get her off of it, but it was up to her heart to start again or not. They said we would know by seven days. I remember feeling like those days would pass by unbearably slow, but to my surprise they flew by and I never gave up hope or faith, not even for a second. Three days later Libertys little heart decided to take over. We had obstacles placed in our paths every inch of the way, but we knew with our faith and love we could push past anything. Liberty taught us the meaning of strength and courage.
It took a few days but eventually Libby started waking up, I remember how excited and overwhelmed with happiness I would get by just seeing her flutter her finger or a blink of her eye. I learned true appreciation for life and love. I will never take a moment of my life or hers for granted.
We spent an additional two months in the ICU after the surgery but it flew by as I busied myself with making sure I got to be involved with as much of her care as I could. We brought Libby to our new home in Tigard, Oregon a few days before July 4, 2005.
The first week she was very tense, you could tell she questioned every move we made. She hadn't known the type of life a baby should. Quickly she fell in love with everything. The fear in her face was replaced with happiness, excitement, and wonder. I was amazed at how not only she overcame everything she had endured but her face was always lit up with huge smiles.
We then enjoyed many months at home, her learning baby things, and I learning not only what it's like to be a new mother, but a chd mother. A life filled to the brim with love, hope, faith and always a touch of fear.
Welcome
This blog is a special one. It is about an Angel, Miss Liberty, who lived alot of life in her short five years. She was and is my definition of true happiness, courage, love, hope, and faith. I can find positive in every aspect of her life, because she made it that way. I will share the many beautiful memories I was blessed to have with Libby. First I will share the story of her life. If you are reading this, you probably have been a part of her life in some way, whether you held her or you are a stranger who spread prayers for her, you were all an important part, thank you.
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