Tuesday, January 26, 2010

Patience

A friend of mine referred to this talk on her blog (thanks Devany!!), and I wanted to share it because it is so applicable to so many different circumstances in our lives.

Patience, Nov. 27, 1979, Elder Neal A. Maxwell. It can be found at http://speeches.byu.edu/?act=viewitem&id=621.

I found the following passages to be especially meaningful.


Patience is not indifference. Actually, it means caring very much but being willing, nevertheless, to submit to the Lord and to what the scriptures call the "process of time."

Patience is tied very closely to faith in our Heavenly Father. Actually, when we are unduly impatient we are suggesting that we know what is best--better than does God. Or, at least, we are asserting that our timetable is better than His. Either way we are questioning the reality of God's omniscience as if, as some seem to believe, God were on some sort of postdoctoral fellowship and were not quite in charge of everything.

We read in Mosiah about how the Lord simultaneously tries the patience of His people even as He tries their faith (Mosiah 23:21). One is not only to endure, but to endure well and gracefully those things which the Lord "seeth fit to inflict upon [us]" (Mosiah 3:19).

Patience permits us to cling to our faith in the Lord when we are tossed about by suffering as if by surf. When the undertow grasps us, we will realize that even as we tumble we are somehow being carried forward; we are actually being helped even as we cry for help.




I love how Elder Maxwell ilustrates that everything in our lives works together for our good. I have felt that so many times during this experience, though sometimes I have to wipe my eyes so the tears would not distort my vision, and prevent me from seeing the blessings.

Monday, January 25, 2010

Empty Hospital

Saturday was probably one of the roughest days I have ever had. We were going to SLC with my family, and since we were in the general area, we thought that we should return Ava's car bed to the U of U hospital, along with some donated blankets for the babies in the NICU. The trip started out fine, but pretty soon Wade and I were arguing about...um, something important, I am sure...and I didnt realize until we had gotten off the freeway at 600 south that I realized my heart rate was way up, and that I had a pit in my stomach. We were both stressed, just even driving the same route that we had taken that day we were frantically trying to get to the hospital in time to hold our baby for the last time. I remember seeing the blue signs pointing the way to Primary Chilidren's; I remember feeling like those traffic lights would never change. I remember sobbing as we pulled in, and Wade telling me that I needed to get out and run to Ava, and my panicked voice crying that I couldnt go in there by myself, that I needed Wade to be with me. So I stayed in the car and we pulled into the parking garage and gratefully found a spot a little ways inside. We both ran out of the car, tears streaming down our faces, and headed into the hospital.

But now we were pulling into the familiar parking lot of U of U hospital. Ava spent more time in this building than any other place during her short life. Wade and I were again crying as we pulled into our parking stall, and sat in the car for awhile, just crying and remembering about the scores of times we had made the journey to Salt Lake to see our sweet little angel. We thought of those times that we felt alone and hopeless; we sometimes wondered if she would ever be able to come home with us. Wade and I got out of the car, and went to get her car seat out. How come it felt so empty? It felt like I was carrying her coffin. We loaded it with the donated blankets--how ironic it was that we were returning an empty car bed, filled to the brim with blankets for other babies, hoping that perhaps their lives would turn out a little brighter and longer.

I have never felt so empty in my life. The hospital felt empty; it no longer had my sweet angel there. I had been seperated from Ava often; but I could always find her and spend time with her here, at the hospital. But not anymore. She wasnt here. From the beginning I was seperated from Ava a lot, but the difference now was that I couldnt go anywhere to find her and love on her, even if it was just for a few hours.

We walked up the steps to the hospital, and I remembered those times we had seen life flight helicopters making their landing on the roof of the hospital. Even then I had cried, imagining the heartache of the people involved. I didnt stop to think that someday the people involved would be my sweet little family and I.

We got to the revolving doors at the front, and were slowly walking in when a somewhat scroungy looking guy followed us, holding a cute little girl's hand. Suddenly we heard the man's cheerful and friendly voice boom, "Well, I guess a 'congratulations' is in order!" He must have seen the little car bed, and made the obvious, but wrong assumption. Wade and I quickly looked at each other, and could see the tears in our own eyes, but this sweet man was behind us and couldnt see our faces. "Yeah, it was just a few weeks ago I was here doing the same thing! Congratulations!!" Wade and I couldn't say anything but a quiet "Thank you". Once again, the irony was a little overwhleming.

We did have a good chuckle however, thinking about the sweet friendliness of the man, and what bad timing he had. But we just couldnt deflate the cheeriness in his voice by informing him that our baby had passed away. Oh, well. God bless whoever he was.

We took the elevator up, and we passed the desk where I checked in that day in October when our little angel came. My dad had been with me, and there was a very apathetic Spanish woman with hard to understand English who had checked me in. We passed the desk, and now we walked down the hallway leading to the NICU, and I had tears streaming down my cheeks.

So many memories. So much joy, and sadness, hope and fear had taken place here, with the backdrop of scurrying nurses, and beeping monitors. This time I couldnt just walk back to where my sweet Ava baby was, and take her out of her crib, and rock her, and put bows in her hair, and read books to her. This time my only business was to return an item. I had imagined the day we would return the car bed, and it was much different than this. I had imagined having Ava in a car seat, and carrying the car bed in the other arm. I had imagined being all smiles, and feeling like I was returning to friends, and being able to show our favorite nurses how well Ava was doing. They would play with her, and we would laugh and comment about the long seven weeks we had spent here. No, there wasn't any of that today. I quietly gave the nurse at the desk the car bed, the blankets and inquired after several nurses. None of them were working today, and wasnt that better anyway, since I could barely speak without my voice threatening to break out into a cry?

We quickly and sorrowfully went through the NICU unit doors for the last time, and it felt like we were telling Ava goodbye again. This time not just for the night, knowing that we would return again in the morning. This time it was for quite awhile--I dont really know for how long it will be, but I do know that it will be a sacred reunion. I feel such peace too, knowing that she no longer is under the care of rather imperfect, even if good intentioned nurses, and that her little broken body isnt impeding her anymore. What a sweet love she had, what a peace and a patience. What courage and strength.

I want to grow up to be like Ava.

Tuesday, January 19, 2010

Peaceful Sorrow

The day that Ava died was one of the most beautiful days of my life. In fact, I have decided that if I were to watch a movie of my experience, I would have been much more traumatized than I actually was going through it. Now it was not pretty, and it was definitely not fun. And I hope that I never have to go through that again. But I will always be grateful that I was able to.

The day Ava died, we had a doctor's appt scheduled. She had been having labored breathing for a few days, and generally acting a little funny, and so scheduled an appt. We had just gotten Ava strapped into her car bed and were pulling out of the driveway when Ava started turning blue. I told Wade that he needed to get us there five minutes ago, and we sped as quickly as we could to the Budge Clinic.

It was obvious to us and her pediatrician that she was having real issues breathing. Dr. Visick made a quick decision, got a wheelchair for me to sit in and hold Ava, while we were wheeled into the ER. Her oxygen saturation levels were really dropping, getting into the 40s, and never getting above the low 70s, no matter what kind of oxygen mask they got on her. As we were shown into a room, I was told to put Ava down on the table, and from then on I was an observer to the chaos and drama that unfolded.

I think that during times of extreme stress the senses must be much more aware. I can remember what each person was wearing in that room, where they were standing, and what they did. There were two student nurses trying to get Ava's oxygen levels higher so that her brain would not be starved of oxygen. There was the ER doctor, the handsome sauve type that speaks with confidence with his arms folded across his chest, strutting across the room. There was the med student who quietly observed, the drug technician who was trying to calculate dosage for Ava while charting the dozens of drugs being pushed into her system. There were two respiratory therapists, both in those ugly, faded green scrubs, and two or three random people I was never introduced to, but joined when the standard crew needed help in the chaos. Our pediatrician remained there, and bless him, saved her from dying right there on the table.

Ava's oxygen levels were still dangerously low. Multitudes of labs and tests were run with contradictory results. Pneumonia, meningitis, tumors and other infections were all suspected, then ruled out. It was decided that a tube needed to be inserted into her lungs to allow a ventilator to breathe for her, becuase sick or not, her need for oxygen was urgent. The ER doctor took the oxygen mask off, and began to gently lift Ava's tongue and make way through her vocal chords for the tube. He needed to be careful to get the tube into the lungs and not the stomach, else her bowels would be pumped full of air. He got it in, and began to pump on the bag, giving her air. But no, her stomach began to expand, and it became evident that the tube was not correctly fitted.

This time our pediatrician tried. He was going to wait til she recovered from that last attempt, and her heart rate and oxygen became more stable. But she didnt recover. He decided that he had to act, and his voice became increasing more tense, and his posture more rigid. Her oxygen levels plummetted, along with her heart rate, getting into the low 20s. I could not breathe anymore either. Was I really going to watch my baby girl die right in front of me, without getting to hold her, love on her, or tell her I loved her? I wanted to leave the room, but I couldn't. I was most definitely there when she came into the world, and there was no way I wasnt going to be there for her as she left. I was sure she would die, and I was hearing Dr. Visick yelling "Ava, help me Ava. AVA, come on!" Just then I saw him triumphantly smile and give me the OK sign, and I took a long deep breath. Dr. Visick looked radiant. I have never seen someone so full of light before. Ava's oxygen levels came up and her heart rate returned to normal. I heard Charly, the male nurse, congratulate Dr. Visick, and I also heard Dr. Visick respond that he was blessed, and that it was not him that found the correct positioning.

By this time, the AirMed attendants from Primary Children's had arrived. It was time for Ava to be life flighted to SLC. Wade and I said goodbye to Ava and her amazing ER staff, and went home to pack a bag and jump in the car for SLC. We talked and cried and decompressed while packing and eating a quick lunch. We had said about ten different prayers by this point in the day, and continued to do so. By the time we got to Centerville, I again had a huge pit in my stomach; I had felt peaceful and strengthened by the Sprirt just minutes before, and now I felt sick. Just as I was telling Wade to stop driving like his grandma, my phone rang. The hospital social worker was on the line, telling me that Ava had been in cardiac arrest ever since she had been strapped into the AirMed bed. They had done chest compressions the entire trip to SLC. She was still in cardiac arrest, and the doctor warned that she could be gone any minute.

With tears in our eyes, Wade and I prayed again; this time just asking that we be able to hold her one last time.

Thursday, January 14, 2010

Journal Writing

So I was going through some things today, and came across a journal that my mom had given me months ago. It had only one entry in it, which I had written 2 weeks before Ava baby was born:

September 22, 2009

Dear baby girl,
It is your Grandma Cathy's idea that I keep this journal for you; what a great idea it is too, because it has been quite an adventure carrying you and waiting for you to join our family.

You have quite the personality already! When we went in for the 20 week ultrasound, you were playing games with us, or maybe you were feeling non-cooperative. Either way, the sonographer tried for about 1/2 hour to poke and prod you into moving until she just gave up. So we set up an appt. to look at your heart and brain @ 24 weeks.

We were so excited though; we were able to see your cute little face, arms and legs. And we couldnt stop smiling about the fact that we were having a beautiful little girl!!

Well, we came back @ 24 weeks, and the sonographer seemed a little perplexed. The OB then came in and told us that it looked like there was an anomaly within the heart, and referred us to a perinatologist to get a more specialized opinion. So a few weeks later we were able to see Dr. Schemmer, who confirmed that there was a heart defect, and who then referred us to cardiologist.

Dr. Su was the cardiologist, and he agreed that there was a heart defect, and, incidentally, confirmed my diagnosis (I had been researching the Internet) of "Tetralogy of Fallot". But, overall, your heart defect was not terribly severe, and optimally could be managed with only one surgery, which could be pushed back hopefully until six months of age.

Now all of this should have been quite reassuring to me, because the heart defect was not that severe, and the outlook of the cardiologists' was optimistic.

But I had these feelings that something else was wrong. When I had met with the perinatologist, I had felt the Spirit telling me that yes, there would be some complications, and there would be difficult things ahead. So when the sunny prognosis was given, it didnt match those feelings I had, and it felt uncomfortable, or wrong.

Well, we went back to the perinatologista few weeks later, and Dr. Schemmer found that your brain ventricles were right on the upper levels of size, and he spoke to us about chromosomal abnormalities, like Down's Syndrome, etc.

We decided to go forward with an amniocentesis, which tests for these abnormalities. Our only concern was that if you had a severe chromosomal syndrome, then we would re-evaluate whether you should have to go through the trauma of open-heart surgery, if your life expectancy would be a small period of time.

During this time, your daddy and I were finishing up work, trying to tie up all the loose ends that come with moving. We moved to Logan just a few days after the amnio so we still didnt know. The hardest part is, and continues to be, all the unknowns. The patience and faith required to to continue on, although the future remains so unpredictable is often more patience and faith than I seem to have.

Well, the results of the amnio came back--astonishingly positive. There was no indication of any kind of chromosomal disorder. So once again, there I was, grateful for your health, but confused as to why I felt those feelings so strongly; those warnings of my need to have faith and be strong.

So since we moved, I have had all new doctors. Dr. Andres found that you were very small, less than three pounds, while you were only 6-7 weeks away from delivery. He also noted that you hadn't been able to have variability in your heart rate, meaning that it stayed at a constant pace, even when they tried to startle you, or make you active. Your brain ventricles were also increasing in size.

I think that i will have to add to this saga later. But I want you to know that I love you and I am so excited for you to join our family. You have a reason to be here, and I believe that God sent you here to do a work. I love you, and think of you scores of times throughout the day. I have already cried over you, and feel very special that I get to be your Mama.

I will always love you for always,

Mom

Monday, January 11, 2010

Sewing the Broken Heart by Hand

I am so glad that I didnt update this blog while Ava was still here...we had so much fun, and now I literally have all the time in the world to write down all the beautiful, traumatic, special and heartwrenching happenings.

Today I tried to take down the sweet little outfits, pictures and blankets that we used for the viewing held in my mom's house. Within a few minutes, I found myself clutching the blanket the hospital gave us after Ava died, crying and rocking myself and the empty blanket in the rocking chair. I grieved for this sweet little girl who I could no longer watch as she slept, the girl I couldnt snuggle, and those precious lips I could no longer kiss. Through the tears I noticed that the blanket I was holding to my chest had been hand stitched. It was sweet and very tender; multi-colored handprints with a pink border. The care of those hand-placed stitches really caught my eye, and I thought of the complete stranger who had cared enough to make this blanket for grieving parents, such as I.

I thought of the multitude of kindnesses that Wade and I have received from the hands of friends, family, even the Wal-mart employee...I felt so blessed and comforted to know that these special people have been God's hands in helping Wade and I through this time.

Then the hurt came stronger with the realization that nothing--not the hand-stitched blanket, not the hugs, the prayers, the meals, the cards, or the flowers--could take the sting away. I wished that whoever had so lovingly crafted this blanket could just as easily and expertly sew my heart back together, saving me the long hours of reflection, deep sorrow, and prayer that will be ahead of me. But then, what kind of a life would that be; a life devoid of feeling, of love, and the pain that often accompanies deep love. No, God forbid that I rid myself of the longing to hold my Ava baby again, orthe longing to hear the gentle sigh she would let out as she settled into a comfortable snuggling position. I will always love my little girl, and though I sometimes wish the pain away, I am grateful for the beauty that is always within a struggle, if we can just find it.

The beauty here is that I have no regrets about my time with Ava. I loved her with all my heart, and loved how I had to spend every minute with her. I loved that in order to take a bath, I had to move her bassinette, her oxygen, and her monitor into our tiny bathroom. Those baths were kinda tricky cause I had to get out several times to peek into her bassinette and check on her, but I wouldnt have ever changed it. I was definitely not a perfect mom, but Ava knows that I loved her with all my heart, and that is beautiful. I plan on seeing her again, and how exciting will that be!

Thank you to the Jennifers, the Heathas, the Ashleys, the Moms and the Dads, and the loving neighbors and friends who were, and hopefully will continue to be, brave enough to cry with us as we celebrated the beauty of life with Ava. And if I could offer up a favor, please keep calling and sending messages, even if I dont answer. It is difficult to answer the phone when grieving deeply.

I am home in Logan now, and I begin the task of storing the baby clothes, the toys, the empty bassinette, returning the hearing aid, etc. I have great hope for the future, and great peace, and great tears.

I am going to be writing often now; I am actually considering writing a book...and I am going to be using this blog as kind of a sounding board for that. Please dont be strangers, and feel free to contact me anytime. I love a good laugh, a good cry, a good conversation. And I love you all. Those of you with kids, please hug and kiss your little ones extra for me.