Monday, July 12, 2010

She Would Be 16 Today

Warning: Sensitive topics, including death, medical stuff, and religion.

She would be 16 today.

Had she lived, we would have had cake, and ice cream, and dinner would have been whatever favorite dinner she requested.

It's all so amazing to think about, this many years later. She really wasn't supposed to have happened at all.

They told me I probably would never have children, and after 3 years of trying, and depression, and eating my way to my highest weight ever, it was a shock when I got pregnant with #1 Son.

The pregnancy went great, at least to me. I barfed for 4 months and lost 15 pounds, then, partly because I was exercising daily and partly because I watched what I ate religiously, I only gained 15. Yes, I ended at the same weight I started at, which pleased my OB mightily.

He was born on my birthday, after more than 8 hours of good strong contractions that took me from 1cm to 1 1/2cm. We gave up and did a c-section, which turned out to be a good thing, as by his head circumference I would never have delivered him anyway. That's what comes of stopping growing taller at age 12.

My doctor told me to go home and be happy I had a child. After all the surgery and other treatments, they never expected me to have one, and he sure didn't believe it would ever happen again.

Bigger Girl followed 20 months later. I had kept my weight down from the first pregnancy, and again lost 15 through morning, noon, and night sickness, watched what I ate and exercised, and gained 15.

I went into labor with her 2 days before my scheduled section, and by the time I got to the hospital and they started the surgery, I was very close to rupturing. They told me I had dodged a bullet, and to go home and be happy, as I now had a boy and a girl. Honestly, since neither of
my ovaries worked right, they didn't see how any more kids could be possible.

We found out I was pregnant again in the middle of moving. From the beginning I was tired, and something felt off. Morning sickness, but more than that.

At 28 weeks, we found out what the something more was. My OB had become almost complacent about me popping up with kids when I shouldn't, but then it hit the fan.

Chorioangioma. A big medical word that means the equivalent of a feedback loop in the placenta. Some of the blood pumped through the umbilical cord goes into a part of the placenta that loops back on itself, so that blood doesn't get to drop its load of waste and pick up oxygen and nutrients the way it should.

These happen about one in every 125 or so pregnancies. Usually they are so very small they are not even detected, or only noticed after delivery.

Once in every 10,000 or so chorioangiomas, they grow big enough to cause a major problem. All that blood that comes back without having properly exchanged waste for food and nutrients has to be pumped back again, forcing the baby's heart to work extra hard to get enough nutrition. Result: congestive heart failure in utero.

Then, there is the further complication called mirror syndrome. It's where whatever the baby is suffering, the mom gets it, too. So here we are, in the middle of moving, a not quite 3 year old and a 15 month old, and I'm going into heart failure and carrying a dying baby.

My choices at first were very limited. Continue the pregnancy as long as safely possible, and take the chance that we mistime everything and she dies before we can deliver. Or deliver right away, put her in the NICU, and hope that by taking the strain off of her heart, she can survive the premature birth.

At the church we attended then, the pastor's wife scolded me when I told her those were my two options and accused me of trying to abort her. Talk about getting kicked when you are down. I'm stuck between the devil and the deep blue sea and now, no matter what choice I make, I'm the bad guy.

At this point, my doctor called with another option. A doctor in Detroit, of all places, whose specialty was in utero microsurgery had agreed to see me. So, pack the kids to my parent's house, and Sweetie and I go to Detroit.

Flying sick, even with no checked bags to make it easier, is a bear. I was very limited in what I could bring, and we had no way of knowing how long we would be gone. Got there and had a taxi driver who couldn't even get us to our hotel. He dropped us a few blocks away, and I had to
walk, in agony every step. He claimed the front of the hotel was blocked by the construction, but when we got up there it wasn't -- he just didn't want to go around the block because he saw another fare possibility that he didn't want to lose.

Checked in and called the doctor, who wanted me up at the hospital right away. The 6 hour ultrasound left me dizzy and feeling sicker than ever. At least it showed him what he wanted to know, and he was amazed that I stood it as long as I did.

What he didn't know, and I didn't say, was that I was savoring every moment, every movement. I knew that this could be the only time I would see her alive, watch her suck her thumb, practice breathing (which they do before birth, believe it or not); she often would put her hands up to her face, as if she were shading her eyes. I asked for an ultrasound picture of her as she was doing that, and I cherish it.

We went back to the hotel, and spent 3 days while they tried to figure out just what to do with me. Back and forth to the hospital, over and over. I got more and more short of breath every time I had to walk a hall, my walking was little more than a mere shuffle, very, very slow.
Sweetie was so bored when we were waiting at the hotel that I agreed to go to a movie with him. Little Big League, believe it or not, would be the last movie I went to a theater to see until our church rented out a theater for all of us to see the first Chronicles of Narnia movie, over a dozen years later.

They insisted on genetic testing of the baby before they would do the surgery they eventually planned, and that was hard, too, waiting for those results. It was a sped up test because of the situation, only 48 hours, but I can only imagine how hard it must be for those who have
to wait the usual number of weeks to a month it can take.

The surgery he decided on was a gamble, the first of its kind. He and his team would go in and attempt to cut off the blood supply to the chorioangioma, so all of the baby's blood would go through the properly formed part of the placenta. They got the idea to use specialized clamps that are used in other gynecologic surgery, and had to get the medical supply place that makes them to modify them and ship them in special delivery.

She didn't want to cooperate, they told me after, while laughing. She kept grabbing the instruments, and they had to untangle the suture material from her fingers. Such curiosity, and even before birth. I like to think she would have continued to be a very curious minded
child, wanting to know everything.

Technically speaking, the surgery worked. By the next morning, although I was feeling sick as could be from the drugs to keep me from going into premature labor, the chorioangioma was shrinking. She was still trying to practice breathing, still putting her hands up to shade her eyes,
still sucking her thumb. Now it was a matter of waiting to see if her heart was strong enough, with all the damage it had already suffered, for her to make it a few more weeks. Every week would bring growth and strength and a greater likelihood of survival, even though she would be
a premie. The plan was to try to get us to 34 weeks at least.

The second night after surgery, it all broke loose. I began to bleed into the uterus, and was bleeding out through my IV, too. Repeated calls for a nurse to help me went unheeded for quite a while -- this was a charity hospital in the middle of downtown Detroit, lots of mix-ups over the course of the days I was there, lots of waiting for stuff to get done. Very overworked staff who tried to do the best they could with limited funding and old buildings and equipment.

By the time help came, it was too late. I felt her final kick as her tiny heart gave out. They took out the infiltrated IV and started a new one, and got a Doppler to try to check her heartbeat. Nothing.

They called in a chief resident to do an ultrasound. I could see that her heart had stopped, and I told him so. He hemmed and said "Er" and "Um" and seemed to be at a loss. I told him that I had known it was all a gamble and that he didn't need to be afraid he would have a hysterical
mom on his hands. That calmed him, and he agreed that they had done as much as they could.

The nurse came in and asked if I was a Christian and wanted prayer. I told her yes, and welcomed her joyful and loving spirit. She helped me to remain calm as I started retaining fluid and swelled up until I looked like I was full term, even though I was only around 29-30 weeks.

I was bleeding internally although they didn't know it, and slightly nauseated when they discharged me from the hospital and put me on a flight home. The journey back, with me using barf bags on every leg of the trip, was worse than the trip up there. I had to have a wheelchair,
I couldn't walk more than a step or two. I got to my parents house and was so dehydrated I barely had time to hug my babies and realize I was in labor.

They rushed me to the hospital for fluids and a transfusion. I was still in heart failure, and they were afraid I would die if I delivered naturally after two c-sections, even though she was so small.

That night, the doctor had moved the nurse call button away from the side of the bed as he discussed what they were going to do. He didn't mean to, but it left me, after they exited the room still deep in their talk, alone. Totally, starkly, excruciatingly alone.

With a dead child in me, possibly dying myself, lying in my own vomit because I couldn't call for help when I felt sick, I knew, more than ever, that only and always is G-d our help and our salvation. I felt the agony of the cry of Jesus, when He felt abandoned; He was alone, even more so than I was. It occurred to me more forcefully than it ever had before that our Heavenly Father knew what it was to lose a Child, and that His loss was infinitely more painful than mine could ever be.

So, they did a c-section on July 12. Very early in the morning. I begged to be allowed to see and hold her in the delivery room, but instead they tried to sedate me. I fought to stay awake no matter what they gave me, and managed to do so. When they finally brought her in to me, I was beyond spent.

We took pictures. Sweetie didn't want to hold her, but he stood next to me. My mother did hold her. My father couldn't even stay in the room. My parents are Catholic, and one of my mother's friends who makes special clothes for statues of the infant Jesus for her church gave us one of the tiny dresses she had made, so we wouldn't have to bury her in just a swaddling blanket.

My mother kept telling me it was time to let go, and insisted that the nurses take her away from me long before I was ready. The nurses then waited until my mom left, and brought the baby back to me, and said I could have her there as long as I needed. I sang lullabies to her, and
cried until I felt empty, then cried more.

Over the next couple of days in the hospital, I had all the usual symptoms of a woman who has just given birth. With a c-section, you end up having intestinal gas, or at least I always did. The gas moving through my system would almost feel like the her moving. I would wake up almost thinking I felt her, and then remember what had really happened. My breasts were painfully swollen with milk for no one, and took weeks to dry up.

I also thanked G-d for the whole thing. Over and over. As hard as the whole experience was, the doctor in Detroit had told me that they had learned so much from this surgery that from now on they would know what to do in these cases, and would be able to do it early enough to
possibly save these babies. I told him that if they learned enough to save even one child, then everything I had gone through was worth it. I still say that to this day.

They let me out of the hospital just in time for the funeral, on my birthday. Yes, we buried her on my birthday, which is also #1 Son's birthday. Had to, it was the only day the pastor of our church at that time, who was bi-vocational, could get away from his other job to preach a funeral, as it was a Saturday. It was a very simple service, in the visitation room of the funeral home, not the chapel. We sang a few hymns a Capella, and the pastor spoke for about 15 minutes. She is with my grandmother and aunt.

Ever since then, if a friend asks how my birthday was or is going, I am likely to say that if I didn't have to bury a child, it was a good birthday.

Several days later, I was still feeling horrible. I had cramps so bad one night that I thought I was dying again. I passed a piece of the placenta they had missed getting out. It was the reason I was still bleeding. I began to recover after that, slowly.

Boxes all over the house, two small children to care for, always short of breath, it was a bad several months. My doctor was afraid for me to get pregnant again, but I told him my body would cooperate and not get allow that to happen for one year. He thought I was nuts, but I was
right. I used no birth control, and my body waited a full year.

As soon as that year was up, although I was still not feeling as good as I had with my first child, I got pregnant again. I pulled my usual sick so bad that I lost weight trick, and #2 Son left me very anemic as well. Then I almost bled to death after delivery.

I had begged them not to sedate me this time, and they didn't, which probably saved my life. The blood clots that form when the placenta releases broke free, and I was literally bleeding out. I was so tired, and kept wondering why I couldn't fall asleep. If I had fallen asleep, or been sedated, they would have found me dead. For the first time ever in his practice, my OB insisted that one of his patients get an iron injection -- my hematocrit was 12% (normal is 37% to 48%) and my hemoglobin was 5 (normal is 12 to 16). The injection left a bruise and discoloration that took over a year to fade.

By the time I got pregnant with Little Girl, over a year later, my body was rebelling. The sickness lasted the whole pregnancy. I was having SVTs regularly. I was so weak I had to crawl on my hands and knees to get up and down the stairs. I was anemic, borderline gestational
diabetic, borderline preeclampsia.

My OB was fed up with me. I wasn't supposed to have kids, for Pete's sake. It was time to end it all. He insisted on a hysterectomy with my 5th c-section, and I didn't even try to fight it. He left the ovaries, of course, such as they were. He's still not sure how they ever worked at all, but now it is 12 years later and I'm not even in perimenopause. They are pumping out hormones better than ever, but I don't bleed every month, which is a plus.

After Little Girl, my weight continued to bounce up and down as it had since I was 12. I would diet and lose, gain it back. Lose it while pregnant or nursing, gain some back, lose it again with the next pregnancy. I had 5 pregnancies in 7 1/2 years, and for a full ten years I was always either pregnant, nursing, recovering from a pregnancy loss, or pregnant and nursing.

When I finally weaned Little Girl, I continued to yo yo diet until I got fed up with myself. I finally cleaned out my diet a few years ago, and now, at 5'0", I weigh around 92 lbs.

The aftermath of all of this -- well, hard to say.

Physically, I still have SVTs, as I have since I was a teen, but they are more frequent now, which doesn't do my mitral valve prolapse any good. Then, the time a year and a half ago when we were doing so badly financially that I got down to 84 lbs. from not having enough food in the house and I got pneumonia has left me with a permanent wheeze in one part of my lung whenever I overdo. My doctor heard it last time I was in, and believes me now when I tell him that I think the lung is scarred there. My thyroid, never strong, now needs regular supplementation, as well as the iodine. I don't let any of this stop me from exercising, and doing
whatever I need to do. My doctors say I am basically healthy, and to let how I feel guide me on when to slow down, or when to keep going.

Naturally, being stubborn, I don't slow down until I am wheezing and worn out.

The spiritual results are that I still go to church every Sunday, still teach Sunday School, still read my Bible and memorize scripture, still pray, still have faith that G-d is always good and never unkind, still believe that Jesus is my Savior. I still cling to Romans 8:28 -- "And we know that all things work together for good to them that love God, to them who are the called according to his purpose."

I am more convinced than ever of the great and infinite mercy of the Lord. When I was in the valley of the shadow, He was with me. I know it was for His good reason, and that we must go through valleys to stand on the mountains of His grace. I know His grace is ever sufficient, and infinite in depth and breadth. I know that His grace will be tried, and at the end He will still be there.

Is my faith or spiritual life perfect? No, and never will be on this side of heaven. I fight depression, struggle to understand why, and believe anyway. It is just a part of the fabric of who I am.

Sweetie and I have had our ups and downs, of course, through all of this. Yet here we are, 25 years this month, working things out, loving each other still.

We have 4 kids, and life is crazy, as it is for everyone. We muddle through.

I often wonder what she would have been like. Would she have had blue eyes like Sweetie and Bigger Girl? Or brown like the rest of us? Curly hair or straight? Would she have been tomboyish, or would I have had my frilly, pink loving, baby doll playing girl that I never got? A math nerd or bookworm? ADD and dyslexia like Bigger Girl? Artist or dreamer or very practical, straight line thinker? All the things I will never know haunt my dreams sometimes, and she was so swollen from the heart failure that it was hard to determine who she would have looked most like. Maybe she would have been like Little Girl, who doesn't look quite like anyone in the family.

I miss watching her grow and bloom and develop. Yes, I know, her days were determined from before the foundation of the world, and G-d knew everything about every one of her moments. He formed her for only that short time with me, to touch my heart and life and teach me lessons I would never have otherwise learned. He gave her life meaning, using her to teach a doctor how to work to save the next baby. I have the human failing of wanting to know what would have
happened, that's all. Something we never find out, that taunts and teases on the edge of the brain in those quiet moments.

So, she would have had her Sweet Sixteen today, if we had delivered her alive on this date all those years ago, and if she had survived. And sometimes I feel like my arms will break from the weight of the empty air they hold when they reach for her.

Today is

Different Colored Eyes Day

Independence Day -- Sao Tome & Principe; Kiribati

International Town Crier's Day

National Pecan Pie Day

Orangeman's Day (a/k/a Twelfth Day) -- Northern Ireland

Pet Photo Day

St. John Gualbert's Day

Anniversaries Today

Henry VIII marries Catherine Parr, 1543 (the one who outlived him)

Birthdays Today

Michelle Rodriguez, 1978
Brock Lesnar, 1977
Kristi Yamaguchi, 1971
Cheryl Ladd, 1951
Richard Simmons, 1948
Christine McVie, 1943
Bill Cosby, 1937
Van Cliburn, 1934
Andrew Wyeth, 1917
Milton Berle, 1908
Pablo Neruda, 1904
R. Buckminster Fuller, 1895
Oscar Hammerstein II, 1895
George Washington Carver, 1861
George Ohr, 1857
George Eastman, 1854
Henry David Thoreau, 1817

Today in History

Saladin's garrison surrenders to Conrad of Montferrat, ending the two-year siege of Acre, 1191
Fray Diego de Landa, acting Bishop of Yucatan, burns the sacred books of the Maya, 1562
Ostrog Bible, the first printed Bible in a Slavic language, is published, 1580
The United States invades Canada at Windsor, Ontario, 1812
Pune, India floods due to failure of Khadakvasala and Panshet dams; half of the city is submerged and the death toll exceeded 2000, 1961
A fire destroys the entire 6th floor of the National Personnel Records Center of the United States, 1973


  1. I read it.
    You are tempered steel.

  2. I agree with Leah. You are far stronger than I, and I envy you your faith.
    (I have no idea what prompted me to come read your blog today - I have been so busy lately that I've been very remiss - but I am so glad I did!)
    Thank you for sharing your story and allowing us a glimpse of your life.

  3. I appreciate you, Bag Lady. You and Leah and Reb are very special people, and I enjoy following what happens in your days.

  4. A big hug to you. I'm sorry for that unimaginable loss 16 years ago. I'm glad for your other children - for they have a very strong mother.

  5. Wow, just wow. What an ordeal. I never had a clue you had trouble with your pregnancies. I just know I love all your babies, including the one that's in heaven.

    Have a blessed day my friend. :)

  6. So sad. I had no idea, So sorry you had to go through all this but I doubt there's much you would change if you could, except for having a healthy birth. My heart goes out to you.

  7. You have such courage and love ~ you are a treasured woman ~ I send you lots of hugs for being you ~ I am blessed to know you in bloglandia ~ Much love ~

    Be Safe, Be Well,
    A ShutterBug Explores,
    aka (A Creative Harbor)