The Oral Report

Standing up in front of the class was never so much fun!

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Location: River City, United States

The rantings and ravings of a mom of three wonderful girls as she finds new love while working like a dog and shaking her fist at the system. You know. Pretty much like everybody else.

Friday, January 05, 2007

Flashback Friday!

Welcome to the third (and final) installment of the birth of my youngest girl. What a Flashback! It just keeps coming and coming! Tomorrow marks her seventh birthday! So, amidst party plans, let me finish up this long-winded story.

For those of you who have been following along, the baby just came howling into the world and the fun was only beginning. Let's away, shall we, to the world of micro-preemies.

Just after [Kid 3] was born, she was, as I'd been warned, taken to the NICU at the children's hospital across the street from the hospital in which she'd been born. I wasn't to see her for a couple days, because of my own health issues, but I got very regular updates from both her father and the medical team charged with getting her through the next few months.

At birth, she had weighed 1 lb., 15 oz. and was 14 inches long. Imagine a bag of sugar. Cut it in half and stretched out. Now take out another tablespoon or so. That's how big my baby was. My index finger was longer and bigger around than her arm. Though, that was something I'd come to learn later.

The first thing that happened after my darling daughter was born, was that a liason from the hospital came to see me (and my then husband) in the recovery room. Because of her birthweight, my daughter was considered a "disabled American" (because of her micro preemie status) and was, therefore, eligible for Social Security benefits. At least she would be until she left the hospital.

It was something I hadn't anticipated and started to blow off entirely. However, the liason volunteered to fill out the necessary forms for us and said the following magic words, "Social Security will pay for any medical costs that your insurance doesn't cover during her entire stay."

::blink:: ::blink:: Granted, I was still pretty hazy, but I was sure I'd misunderstood what she'd told me. "You'll do all the paperwork to make $50,000 worth of medical bills disappear for me? Where is the catch here?"

It was one of those very rare instances where there was no downside. True to the hospital liason's words, Social Security covered the 20% portion of the $250,000 hospital bill associated with my daughter's birth. Otherwise, I'd likely still be paying her off for some time to come.

Shortly thereafter, Baron went to the hospital across the street to check on our daughter and I was wheeled to my room.

As reported, my blood pressure started to come down almost immediately. The thing I remember most was that for the first twenty four hours, I was peeing like anything. I had a catheter (GOD, I hate those things!!), but the nurse kept coming in to change the bag frequently. The abdominal incision made getting up painful and difficult, but I was up (and catheter-free) within about ten hours of the surgery. Not in top form, by any stretch, but doing my best. I wanted to be strong enough to go see her. Plus, she was going to need me.

The next day, Baron was able to transport me, via wheelchair, to the NICU in the facility next door. After the mandatory two minute hand-scrubbing before you could enter the high risk ward, he wheeled me past several very tiny babies to the incubator where our daughter clung to life.

I had been warned that she'd be hooked to several monitors and was on a respirator, but nothing prepares you for the first time you see your child that way. Nothing. The sadness consumed me as I sat there looking into the plexiglass box, wondering what the next months and years would bring. The tears were streaming down my cheeks.

In one of his most sensitive moments, Baron softly said to me, “She needs you. She needs you to talk to her. She needs you to touch her.” And he opened one of the portals to the incubator so that I could reach inside and stroke her very tiny arm. I felt so lost and inadequate and just didn’t know what to do. But he had helped me find my way at a time when I needed it most. I’d never known anyone who had been through something like this and had no experience with a situation like this.

The doctors in the NICU met with us and told us that she was doing very well and meeting all of their expectations. They believed, very strongly, that she had excellent chances to survive. They weren’t worried in the least. It was quite convincing and at a time when we had no hope, they gave us a precious gift. One I cherished deeply.

My parents came to the hospital to see her. It was difficult for my father. He worried…still does…so much. My mother put on her best Mom Game Face for me and told me that she’d spoken with the doctors, too and that she believed them.

She took photos of the baby in her incubator. I kept thinking that it would be too depressing to look at them…especially if we lost her. My mother insisted that some day we’d want to have them. That we’d want to see how far she’d come. At the time, I couldn’t imagine it. But she was so very right. I’ve included a couple of them for you, to see.

The top picture is at three days old, the middle one at about two weeks, the last one at one month.

I didn’t get to spend much time with my baby, because of my own health concerns. I was continuing to improve and on day three ran into just a slight setback when my incision became slightly infected. I was put on antibiotics and it was nothing serious, but it did add two days to my hospital stay. It was difficult not to be with her. Difficult not to be with my other two girls, too.

On that third day, my paternal grandmother (who lived about sixty miles away) came to see me at the hospital. She’d been kept abreast of developments and was, like most of my family, genuinely concerned for me and the baby. I was, after all, her very first grandchild and in thirty seven years she’d grown rather attached to me.

I met her at the NICU where she and I stood beside [Kid 3]’s incubator. Like everyone else, she began to weep silently. I put my arm around her and tried to comfort her. By this point, I’d begun to believe that it would be hard, but we’d get out of this fine. The first time each new family member saw her, it was like this, though.

My grandmother turned to me and said, “Tammy, I love you, but that baby is never coming home from the hospital.” She was deeply troubled and didn’t say it maliciously. In her time, a baby in that condition didn’t come home from the hospital. And if it did, it didn’t come home without serious lifelong problems. She was trying to, in her own way, prepare me for what she felt was the inevitable.

On day one, that statement may have had me breaking down hysterically, but it didn’t on that day. I told her that the doctors had assured me that she was going to be okay and that I believed them. Further, that that baby would be running through the apple trees in her yard someday soon. And I said it with some conviction. Though I’m certain she thought I was only kidding myself.

That night, my father called me at the hospital. And we talked for a long time. He told me he’d prayed that day. Prayed that God would “take him” so that the baby could live.

Now, I never wanted anyone to give me false hope. I never wanted to labor under the delusion that my baby was going to be okay if she wasn’t. But, for some reason, the way my dad was talking to me (although he thought he was making an effort to comfort me) made me feel that her “true” condition was being kept from me. So, I point blank asked him. “Dad, is there something wrong with the baby that no one wants to tell me? Are they afraid to tell me something bad because of my condition?” And while he assured me that that wasn’t the case, I didn’t feel better about it until I spoke to the doctors.

The doctors advised me that it would take time and that I should be patient. That I should expect my baby to go home on or around her original due date. In this case, that was March 31st. That seemed so far away, but it gave us a goal. Over the next weeks and months, we endured the stresses that a situation like this brings.

I took family leave from work. There was simply no way I could go to work and expect to get my head in it. Not with my baby in that condition. So, as soon as I got home, I got on a schedule of visiting the hospital every day while my older girls were at school. I’d come home in the afternoons to meet them and cook dinner and then we’d often go back in the evenings, coming home in time to put [Kid 1] and [Kid 2] in bed and start the next cycle.

[Kid 1] and [Kid 2] spent many hours in the NICU waiting room over the winter months of 2000. Because it was flu season, children (while siblings would normally be admitted) were not allowed into the NICU. Consequently, they did not see their sister until she came home with us.

I was extremely limited with what I could do for my infant daughter. My duties included applying ointment (to keep her very fragile skin from deteriorating) and pumping milk. She had a feeding tube for most of her stay, because she was too weak to nurse or feed from a bottle, but I was able to provide milk that would be used to nourish her. Of course, it was boosted with human growth hormones, but I felt I was contributing in some small way.

After two weeks, I still hadn't held my daughter in my arms for the first time. I remember standing at her incubator late one morning. I was talking to her and a nurse I hadn't seen before stopped and asked me if I had any questions, or needed anything. I asked her when I'd finally be allowed to hold my daughter. She told me to hold on and she'd be right back.

I saw her review the chart, talk to another staff member and then she came back. With a rocking chair in hand. She said, "You can't hold her long, but you should be able to hold her a little." I will never forget feeling her placed into my arms that first time. I sat and rocked her for ten minutes. Crying the entire time. I was so very happy.

Of course, much of that time, I felt so out of control. I needed all of these other people to take care of my child because I couldn’t. I felt helpless and hopeless and inadequate. And I hated it.

The criteria, at that time, for having a baby released from the hospital was threefold.

1) The baby must be able to “nipple”.

Whether that was breastfeed or bottlefeed, your baby had to be able to take in sustenance. Sounds simple, but tiny babies can’t do this very vital thing naturally. They have to learn it. And most of them don’t learn it easily or quickly.

2) The baby must be able to maintain temperature.

The body’s ability to maintain temperature is almost exclusively tied to body fat. My baby had none. Zero. So maintaining her temperature was an impossibility. Once out of the incubator, she was kept wrapped in blankets with a hat on. As the blankets slowly came off, she’d go backwards and forwards with her progress until it finally worked.

3) The baby must have had no apnea’s (pauses in breathing) or bradycardia’s (pauses in heart function) for forty eight hours.

In all honesty, there is some give and take here. This criteria sounds the most serious and, believe it, it is, but there are monitors that can be sent home to help with this, and if a child has a history of apnea’s and brady’s that is significant, the hospital may require a longer period than forty eight hours free of them before they’ll discharge. Luckily, we had very little issue there.

With one very scary exception, we never had any serious issues. Normally, if the monitor would go off, the treatment was to gently massage her to stimulate the heart or lungs to restart. That almost always worked.

Not long before we brought her home, I had a scare when I was "kangarooing" her. For the unintiated, kangaroo care involves getting skin to skin with your preemie. You cuddle their little naked bodies against your naked chest and it helps them regulate their heartbeat and breathing. To keep them warm, you button them up inside your shirt with only their little heads poking out the top and then pile blankets outside your shirt to help warm them more. It was one more thing I could do at a time when I was eager to make any contribution at all.

In any event, I was kangarooing her and looked down and saw that she was blue. As they are removed from the monitors for this, she had apparently slipped into an apnea situation and I began to panic. I called for a nurse and she came over to do massage stimulation, but it simply wasn't working.

Within a minute, she was ripped from my shirt and given CPR to rescusitate her. It was so traumatic to watch the three nurses try to bring my baby back. Finally, with O2 being administered, she was breathing again. But within two minutes she had another episode that required her to undergo CPR to get started again.

I remember going home that day in tears. How could I possibly endure these things every day?

So began the arduous journey to get [Kid 3] home from the hospital. Good days when I'd get to the hospital to find she'd moved from the incubator to a regular isolette, bad days like when I arrived to find she'd developed a urinary tract infection and had been moved all the way back to the most critical care area. But I never knew, from one day to the next, what tomorrow would bring. Try as I might to prepare, there was just no way to do it.

More times than I can count, she'd pull out her feeding tubes and iv's. She drove the nursing staff batty. She just didn't want all that "stuff" on her. The nurses would tell us that it was a good sign that she was so feisty. Her father would snort, look at me and say "I don't know where she gets THAT from?" (I've got plenty of 'feisty', though, and, proudly, some of it has rubbed off on every one of my girls.)

I won't go into everything that happened while [Kid 3] was in the hospital. Time dictates that I skip past far too many of them, and you all know the story has a happy ending anyway.

I'll note that on March 4th, she had met all her criteria to come home. I had become so comfortable with her size that I'd already begun mentally comparing full-term babies and thinking them HUGE. I told the nurses that all they were doing was bathing her and feeding her and I could do that at home. I wanted my baby home.

Sometimes I wonder if that's all they were waiting for. To make sure I was okay with it. That said, on March 5th (a full three weeks ahead of schedule), at 3 lbs. 10 oz. we brought our two-month old daughter home. She came home with no equipment and no special medicines. She was met by her sisters for the first time, who couldn't have been more happy to have her home and to close such a frightening and painful chapter in their lives.

She was also met by my grandmother. I've included the picture of her holding [Kid 3] for the first time. The sheer exuberance on her face never went away. Everyone felt that way about her. She was a "miracle baby" and has been spoiled rotten since birth. Not only by me and her father and her sisters, but by everyone who comes in contact with her.

We went through about 18 months of seeing many, many doctors (pediatric cardiologists, developmental psychologists, opthamologists, etc.) on a far too regular basis, but at the end of it all she has no lasting evidence of any of it. She is extremely bright, and completely healthy, and loveable, and funny, and sweet and I couldn't feel more lucky if I won the lottery.

Tomorrow is her seventh birthday and it is just as special to me as all six that came before it. I cannot express the gratitude I feel for having been given the priviledge of sharing her life. Each day is another adventure, and every one of them is a gift.

Have a good weekend, gang. I'll be partying with [Kid 3] and her friends. Don't get much better than that!



Blogger Handsome said...

A beautifully written, and very heroic, story. Honestly, sweetie. I'm always proud of you, but when I read this stuff, I'm even more so than usual. And to think that seven years down the line, anyone who has spent even five minutes with The Baby can see that every minute of ordeal that you went through and every penny of expense was more than worth it.

1/08/2007 10:50 AM  
Blogger SuperFiancee said...

It hardly feels heroic. I had few choices in the matter. I'm glad we both came out of it virtually unscathed. Moreso, that unless I tell the story, no one knows anymore. It has definitely left a mark, though.

At her birthday party the other day, the mother of one of the guests made a comment about a small baby and [Kid 3] piped up that she was a teeny one herself. The mother turned to me and asked how big she had been. When I told her, her mouth fell open and she said she'd never have guessed. Makes me feel I've done something right in the last seven years.

One of the hardest battles, though, has been fighting back the urge to spoil her (and, yes, that's tough for me) well as everyone else's well-intentioned efforts in that regard.

It's hard not to feel she's somehow "special", but it doesn't prepare her for the real world and the life she will eventually have to assume, if I raise her differently than I did her sisters. While we may feel she's entitled, the rest of the world will be far less impressed by her birth story. And no one is doing her any favors by letting her run the show now. It's only gonna make it harder for her to adjust later.

1/08/2007 11:15 AM  

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