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.

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.

 

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.

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.