Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Tuesday, October 09, 2007

A Story of Faith and Hope

In honor of Down Syndrome awareness month, and the "31 for 21" challenge, I thought I'd post our story here. I hope you enjoy it, and can see why I KNOW Angela is a child of God.

In 1993, shortly after Angela's dad and I got married, I had a dream. I saw myself 8 months pregnant and having an ultrasound done, and there were twins in there! The doctor could clearly see that one baby was a girl, but he couldn't see the other one. Then I heard God's voice say, "Though shalt name this baby Faith. For the Faith that you had that you would have a girl." Then I saw myself delivering, and as the first baby was delivered I announced her name as Faith. As the second baby's head appeared I heard God's voice again say, "Thou shalt name THIS baby Hope, for the hope you continued to have that you would have 2 girls."

Fortunately, I had the presence of mind to tell the story of that dream to everyone I knew! I would come in handy later when I was not in a state to remember such things.

Fast forward 3 years. I spent a winter pregnant, and went on bed rest at 16 weeks due to a placental abruption. We could NOT decide on a name, but I knew I HAD to have her middle name as Faith! Her dad wanted "Angela", but I didn't because at the time I was interpreting for a girl by the same name, and I didn't want her to think I named the baby after her. We went around and around and just could not agree on a name.

On June 2nd, 1996 my doctor had finally given me the O.K to go to church, and DRIVE there myself! (My sister had picked me up a few times, but I kept it a secret from my doctor) While driving down a quiet country road to church I suddenly KNEW there was something WRONG with this baby. It wasn't a "what if" kind of feeling, it was an "I KNOW!" kind of feeling! I was in instant hysterics. It's only a 10 minute drive to church and it was all I could do to compose myself and walk in the door.

When I got there (late as usual) I sat in my seat and just tried to calm down. Suddenly the song "Standing on Holy Ground" played, and in front of the church I saw my baby, floating in the air, with 2 circles of angels around her. The first, inner circle was facing her, caring for her. The outer circle was facing outward, standing poised as if fighting a battle. I heard the strong quiet voice of god say, "Her name shall be Angela Faith, for the Angels of Faith that protected her throughout this pregnancy. Your fear was unfounded. She will come to teach, she will come to heal, and she will come to love more than anyone but I can love."

Now, I wasn't due until July 4th. But I had the feeling I wasn't going to go that long. Three days later, on a Wednesday, at 35 weeks, I had a dr. appointment. He told me she was really small, but that they weren't going to try to stop my labor anymore. I had been months on the meds and I was still contracting A LOT, and he felt the last of the functioning placenta was shutting down. But he warned me that if I went before 36 weeks they would airlift the baby to the NICU unit in Minneapolis. He wanted me warned ahead of time so when I heard the helicopter I wouldn't freak out about it. We also discussed the possibility of a c-section. I'd spent so much time in bed I was afraid I wouldn't have the strength to labor, but I was even MORE afraid of a c-section! See...I have control issues...and having a c-section means I AM NOT IN CONTROL! I also didn't want to hear suctiony kinds of noises, or feel the tugging that women talk about. I told the dr. if I had to have a c-section, I wanted to be KNOCKED OUT! That comment got me nowhere, of course.

On Thursday morning, about 4:00 a.m. I woke up to pee. I waddled to the bathroom, and then went back to bed. When I got there I realized the baby didn't wake up like she normally did. Usually I'd go back to bed and she'd bounce around in there awhile, keeping me frustratingly awake. Sometimes I would play "tag" with her, poking one side of my belly, then the other as she moved to get away from the pokes. But this time there was nothing. I decided I was being over sensitive, and went back to sleep!

At 6:00 a.m. my husband left for work. As had become his habit he asked " Is it O.K for me to go to work that day?" In other words, he didn't want to drive an hour only to get called home as had happened on several occasions!

Not wanting to alarm him I decided to keep my concerns to myself. I was sure I was worrying about nothing anyway. As soon as he left I got up and ate a PB&J sandwich and a glass of orange juice. You know, sugar kick for the baby to wake her up a bit. A half hour later I still hadn't felt any movement, so I put the buzzer of my alarm clock against my belly, hoping to startle her awake, but still NOTHING!!!! Now I was starting to panic a tiny bit.

I called the hospital and their first question was " How many MINUTES does it take you to get here??" I told them 20 and hung up. Oh my God! I had two 6 year olds sleeping in the next room. I woke them up, threw some extra clothes in a bag, and sent them walking in their P.J's to my daycare friend down the street.

I threw a bag together for myself, and then realized I needed to call my husband! He didn't have a cell phone, so I called his boss, who said Andy was just pulling in the yard. I told him, "I'm going to go get checked out. Don't worry about coming down to the hospital yet. I'll call you as soon as they tell me something useful." Thank goodness he never listened to me! When I got to the hospital, there was Andy standing at the entrance waiting for me (to this day I don't know how he beat me there!) along with a nurse and a wheelchair.

They wheeled my up to an L&D room, and strapped on a fetal monitor. I was told to push a button anytime I felt even the slightest movement. After 15 minutes of laying there feeling NOTHING, all of a sudden a flood of people came FLYING into the room. Apparently I'd had a contraction so mild I didn't even feel it, but the baby's heart rate dropped to 20 when it happened. They wheeled in an ultrasound machine and gelled up my belly, only I was scared to death to look at the monitor, sure I was going to see a dead baby! They looked for the smallest movements, like fingers and toes, and there was NOTHING, only a very slow heartbeat. But what was worse was the total lack of MEASURABLE amniotic fluid!

Before I could take a breath, the world started to spin around me. Andy was next to the bed, frantically making phone calls. One nurse was next to me, trying desperately to start an I.V. while another was between my legs trying to get a catheter in me. They stood me up and made me walk across the hall to the surgical suite, as there was no time to wait for a gurney.

I lay down on the bed and suddenly freaked out! It was all too fast, I had no control. I followed orders and bent myself in half while they tried to get the spinal block going, and the next thing I know I'm laid out naked on the bed, crucifix style with my arms strapped down. Not exactly feeling in control of the situation! One nurse started started shaving me. I told her if she ripped the hair out one by one, it would be less painful! Someone kept pinching my toes, and I kept yelling “I feel that! I STILL feel that!” I was scared to death I would be the on in a million who would feel everything during surgery.

I heard a voice near my head say, “This is taking too long, maybe we should do a general?” Suddenly I didn’t WANT to be put out! Suddenly I wanted to know everything that was happening, even if it was so fast I couldn’t comprehend it. I became claustrophobic, and demanded that one arm be untied. Then I was told “Here we go!” There was lots of talking, and two people came up by my head and started pushing my belly towards my feet. I felt like they were going to push me off the table! I kept asking my husband, “Is this normal? This is NOT normal! I KNOW this is NOT normal!” The two gowned people continued pushing and there was tugging everywhere on my body, making me feel like they were just going to quarter me. I was in the midst of hysterics when I realized I could hear a helicopter just over the building. I had an odd, comforting feeling. I said, “I hear my baby’s ride!” and everybody laughed a strange, “this woman is nuts” kind of laugh.

“Here she is! What’s her name?”

“Angela Faith!” I yelled, and then turned to my husband, realizing we’d never finalized this decision. He thought it was a wonderful name. (Mostly because he thought he got his way. He had no idea what had happened in church just a few days before.)

But Angela Faith was very quiet. In fact, the entire room was quiet. There were a few hushed whispers off in one corner of the room, and some over my belly, but no baby cries to be heard. “Why isn’t she crying? I don’t hear her crying! WHAT IS GOING ON?” I demanded! On my third attempt, the doctor at my belly said something about "the mom getting hysterical" and "would someone please ANSWER her!"

I heard a muffled voice from the corner of the room, “She’s breathing now. She’s not crying because we had to intubate her, but she’s pink and looks great.” Later I would find out the “great” was just to calm me down, because, “near death” was much more accurate!

Angela Faith, before I could see her, was whisked off to the nursery to prepare her for her first helicopter ride. Relieved that the crisis was over I nervously joked with the doctor who was closing my belly. I begged for a liposuction, but she said no. Something about liabilities, wrong tools, etc. A person can try right? I wonder if I would have been joking had I known the trauma my husband and parents were going through in the nursery. Whoever said it was right, ignorance is bliss.

With my incision closed I was moved to my room. The nurse told me the baby would be brought in for a minute before she flew. I looked out the window to see the helicopter right there on the pad, not 300 feet from my window!

Andy came in, with my parents at his heels. I asked how Angela was, and his reply of “Fine.” Sent chills up my spine. I looked to my parents, standing at the foot of my bed, and realized my dad was crying. Never in my entire life had I seen my dad cry! “Everything is NOT fine! What is wrong with the baby?”

“Well,” Andy took a deep breath here; I thought he was going to pass out! “They think she might have a little bit of Down Syndrome.”

“A LITTLE BIT OF DOWN SYDROME? You don’t HAVE a LITTLE BIT of Down Syndrome! You either HAVE IT or you DON’T!” I was, needless to say, very upset, but I didn’t have time to say more. Just then Angela was brought in, and set in my arms. Because they were bagging her, I couldn’t see her face. She was so tiny! She was only 4 pounds 4 ounces. All was quiet in the room…...peaceful. But, I knew enough……I turned her hand over and stroked the single transverse crease across her palm.

After 3 minutes with my baby, they left in a flurry of flight suits and IV bags. I watched out the window as she was loaded in. I didn’t even notice the tornado warning sirens going off until the nurse came to move my bed away from the window. Great! My baby is flying in tornado weather.

My husband was a wreck, “Where do I go?” I told him to go with the baby, of course. I could handle myself here, but she needed her daddy with her. So he left too. And then my mom, standing at the foot of the bed said, “You know; now it all makes sense. Everything you’ve done with your life until now; all the kids with disabilities that you were determined to help, with diagnosis I couldn’t begin to pronounce. Now, all of that makes sense.” My mom was so right! (As she always is!)

I looked at the clock, it was 11:25 a.m. Angela was born at 11:03. I had only been at the hospital for two and a half hours, and in that time my life had been turned upside down! I couldn’t sleep. All day the nurses kept coming in telling me I HAD to sleep, but it just wouldn’t come. My baby was an hour away, and HELLO! She has Down Syndrome!

My sister came in the afternoon, and helped me make the phone calls that were supposed to be joyous. The worst was calling my cousin who was due with her first baby at about the same time Angela was supposed to arrive. I didn’t want to make her worry that this could happen to her too.

When my sister left, and all was quiet, I was left alone with my thoughts. To tell you the truth, I don’t remember much of them. I only remember crying tears that just seemed to come from the deepest well.

At 11:00 pm the Neonatologist from the Children’s Hospital NICU unit called me to get authorization for Angela to receive a blood transfusion. (She would go on to receive 19 of them over the next month.) I asked if he thought she really had Down Syndrome or not, and was told what I later would discover to be a common answer, “We’ll just have to wait to see what the blood work says, but she does have some of the characteristics.”

The next morning I was going to be transported to the Maternity floor at a different hopsital that adjoined Angela’s hospital. Unfortunately our insurance wouldn’t cover the transport, so my husband had to take me himself. The catch was, in order to leave the hospital, I had to be able to stand. This was going to be interesting since I’d just had a c-section and couldn’t yet feel my feet! With the help of 2 nurses I WALKED to the shower. The nurse wouldn’t leave the room, and I told her it was just like my days of showering in the Army! All she needed was soap for herself. LOL

The drive during rush hour traffic across town was so scary! I was a nervous wreck, grabbing hold of anything I could whenever Andy had to brake, feeling as if my belly would burst open with too much pressure. When we got there, a nurse was waiting for us with a wheelchair. She let me sign all the papers right there in the hallway, then brought us through the tunnel to the NICU. She showed us the procedures of washing and gowning before we entered the unit, but I was rushing to see my baby!

When we FINALLY entered the unit, I stood up out of the wheelchair. The NICU nurse looked at me and said, “Did you just have a c-section YESTERDAY? You’re not moving like a section mom!” I made some goofy comment, and turned to the baby on the warming bed.

Here she was! Here was the most amazingly beautiful little girl I had ever seen in my life! I looked around at all the other babies in isolets, hooked up to various machines. My baby had an I.V. in her scalp, a nasal feeding tube, and that was IT! She wasn’t even on any oxygen! I looked at her closely...she looked so much like me! My boys are blonde haired and blue eyed, but Angela was so DARK! She had tons of pitch black hair, and dark olive skin like mine. Ok, she was a bit jaundiced, but she was still dark! The nurses had her dressed in a red ruffled doll dress, with a pretty red ribbon clipped in her hair. Her nurse blushed when I commented on the outfit. “It’s not often we have a baby we can play with! Usually they’re hooked up to so much stuff, but Angela we can carry around!” And carry they did! But as I looked at my beautiful girl, I questioned the question of Down Syndrome.

The neonatologist walked in and introduced himself. I never did register his name. He explained the medical issues that were of immediate concern for Angela. They were $10 words, but in English she had Direct Hyperbillirubinemia, (which, unlike typical newborn jaundice, does not respond to phototherapy) a nearly non-existent platelet count that happens with the placenta shuts down too early. The body, in its desperate attempt to get oxygen, stops producing platelets (clotting cells) and over-produces red blood cells (oxygen carrying cells). Because of this, she was at significant risk of brain bleeds, so was receiving platelet transfusions. Her gallbladder was mysteriously missing, and she’d undergone several ultrasounds to try to find it. She had cholestasis (sp?) a condition of the liver. She was getting several medications via her I.V and nasal feeding tube.

But I didn’t care about any of that. I wanted to know if she had Down Syndrome or not!

So the doctor started at the top of her head and pointed out all of her features that were red flags of Down Syndrome or some other chromosomal anomaly.

1) Brachealcephaly (the back of her head was VERY flat.) I felt the back of my head, and tried to sneek a peek at her dad's.

2) Nuchal fold (fat pad at the base of the neck/tope of the shoulder blades) I felt the back of my neck, and looked at her dad's snuck a look at her dad's as well.

3) low-set ears with over curling on one of the pinnas (outer ear) I felt my ear, sure that there was over curling there. I couldn't see her dad's ears. I tried to picture the ears of our 4 other kids.

4) Almond shaped, slanted eyes My eyes. Angela had my eyes. I remembered all the times when I was a kid did people ask me if I was of Asian decent.

5) epicanthal folds (a crease at the inner/underside of the eye.) Yep, I was pretty sure I had that. Nope, her dad didn't.

6) Total lack of a nasal bridge. I have a huge nose.

7) down-turned corners of the mouth (Angela looked like she was frowning) I wanted to find a mirror!

8) Cool Protruding tongue (she looked like she was playing with it all the time, and it was so long!) I KNOW I remembered Tyler playing with is tongue as a baby!

9) Wide set nipples Wasn't gonna check that at the very moment.

10) Single transverse crease across the palm of the hand I had already checked my hands, my husband's hands, and the hand of every person I could sneak a peek at, and found that her brother Robbie had a single crease on one palm.

11) Short stubby fingers (Angela’s were not even ½ the length of her palm) Nope, not something I have, or her dad.

12) Arms wide spread/palms open instead of clutched inward like a typical baby will do I felt like I couldn't remember enough of my boys when they were babies, and wanted to go back to look at pictures!

13) Extra wide space with a crease between her big toe and first toe Ok, my ex husband had that! Oh wait..he's an ex!

14) Short toes

15) Extremely low muscle tone throughout her entire body I had a hard time understanding this concept.

16) A questionable heart echocardiogram that showed a small but common heart defect.

Ok, so when he pointed everything out one feature at a time I could see it. Yes, she was different than my other babies. I wish he’d never showed me the features, because until that time, I thought she just looked like me. Now...Now she was ‘different’.

That evening the nurse said to me, “Didn’t you have her at W. hospital? Because that baby right in the next isolette has Down Syndrome too, and is from that area. I’ll try to hook you up with her mom, but she was discharged today. I’m sure you’ll run into her here. That baby will be here awhile.”

The nurses had stuck cute little posters above the babies’ beds with their names on them. The name above this other baby was Hope.

Nice name, Hope. Strange that the lived so near us. We were in a VERY rural area! The significance of Hope’s name never dawned on me until I called my mother, and mentioned this other baby. My mom was silent on the line. Finally she said, “Leah, don’t you remember that dream? FAITH AND HOPE!”

Oh my God! How could I forget THAT? I was determined to get in touch with Hope’s mom now, but sadly our paths never crossed. I spent my days traveling between the NICU and my room where I was frantically trying to get used to pumping milk. Liquid Gold the NICU nurses called it. I called our school district to have then notify the Early Intervention program. I’m sure they thought I was off my rocker, calling so soon, but I felt the need to DO something!

Finally the day came I was to be discharged. I did not want to go home yet, almost two hours away from my baby. My doctor came in, asked how my baby was doing. I told him they estimated her to be there a month or more. He looked my staples, and in a sarcastic voice announced that because my incision was still bleeding (it had ONE DROP!) I would have to stay another day. This allowed me one more day near my baby!

The next day, as I was waiting in my room for Andy and the kids to pick me up, the curtain separating my bed from the empty one on the other side of the room was drawn, and another mom was brought in. As I listened the conversation between the nurse and this mom, I learned that she was being re-admitted because of some complications she was having since her delivery a few days before. Finally, putting all the information together, I realized this was Hope’s mom!

As soon as the nurse left, I stuck my head around the curtain. She was in tears, clearly very upset for being back here, not with her baby. “Are you Hope’s mom?”

“Yes.” She said, obviously wondering how I knew this.

“My baby, Angela, has Down Syndrome. Hope is next to her in the NICU.”

We were both instantly ecstatic! We talked a blue streak until Andy arrived an hour later. (Thank God he’d gotten stuck in traffic!) Therese had had a similar “Faith and Hope” dream right after they received their prenatal diagnosis of Down Syndrome. We discovered that “Faith and Hope” were due on the same day, July 4th, but Hope was born on June 5th, and Angela on June 6th. Hope was not expected to survive her delivery, having a rare lung disorder, but that feisty little girl pulled her own chest tube out when she was one week old, something that is normally done by a surgeon!

On June 6th, 2007, Angela turned11 years old. We are still in contact with Hope and her mom. It is a friendship that is God ordained and will continue for a lifetime


Anonymous said...

I have goose bumps...Thanks for your story. ~Monica~

LeeJo said...

OMG, I cannot tell you how eriely similar my delivery of Alex was. No movement, heartrate decelerations.

I love the "Faith and Hope" story. Incredible.

Megan's got 47 said...

I always love this story! It truly is amazing!

ann said...

I started reading the title thinking "why is she writing about my kids...Faith and Hope..ha ha. Your story has come at a funny time too because Nov is prematurity month and it has really gotten me thinking about Hope's birth story.
Take Care

Miss Molly said...

This story touched my heart. Thank you for allowing me to read about such an incredible occurrence. God chose you, and he chose wisely!