Monday, April 14, 2008

Ruthie's Story

In some ways, Ruthie's story began many years ago because I think that God had been preparing me for her all along.

It began in earnest in March of 2004, a few months before my 45th birthday and just a few days from our 22nd anniversary...when I found out I was pregnant.

We thought we'd already had our "surprise" over 40 baby when Lucas was born almost 4 years earlier. We actually thought about another baby after him, so he wouldn't be alone at the end of the pack (he came 6 years after our 4th child) but after a couple of years I didn't get pregnant and, as I'm well versed on fertility statistics, I knew the chance were becoming slimmer and slimmer and we mentally moved on from the baby years. We were so certain we were finished, we canceled our maternity insurance, which cut $240 a month out of our tight budget.

My husband knew I was "late" and was asking about a friend who was also late and concerned she might be pregnant. When he asked if I was still late...and I nodded my head...he then asked if I was going to take a test. I actually already had, but it was very faint and I was going to re-test the next day, but there it was. I couldn't lie, so I told him I had, and it was positive.

After the initial look of shock, he put his head in his hands, shaking his head. A moment later he looked up laughing and asked "what are we going to sell?" If he had any doubts or misgivings after the initial momentary shock, I never knew about them.

All in all, the pregnancy was rather uneventful. I walked with the friend mentioned above almost daily, I actually lost weight. By midway I had to watch my blood pressure and my blood sugar, but neither posed much of a problem.

A borderline non-stress test, just days before her due date, had me in the hospital for a bio-physical profile, which is a very detailed ultrasound.. The technician spent a lot of time with the wand in one spot, looking at the screen. I was getting nauseous from being on my back with him pressing on my belly and his demeanor was making my skin crawl. Her score was 4 out of 10 and we were sent up to labor and delivery for an induction.

I was never so glad to be hooked up to those monitors and hear the heartbeat clicking away. There was apparently some mix-up and I was there all afternoon before the cervical gel was placed, at 6:30pm, to get me ready for an induction. I hadn't eaten since breakfast and now couldn't in case I needed a c-section to deliver the baby. I was starving, scared and stressed. The gel started some mild contractions and at about midnight, the baby wasn't reacting so well to them. The gel was removed, the contractions stopped and the baby stabalized. The surgical team was called and I was wheeled to surgery.

I was crying and shaking, afraid of surgery (both my mom and my sister had severe allergic reactions to meds post-op), and scared to death they wouldn't get the baby out in time. When the spinal didn't take right (I could still feel everything) I was put out and I woke up in a post-partum room, no husband or baby in sight.

I was barely conscious when I started asking about the baby. What did I have? Where was the baby? Is the baby ok? No answers. "I don't know, I'm here to take care of you." was the reply. I KNEW that was a lie. She had to know. It's a tiny hospital. I was sure my baby had died and they were waiting for the doctor to come and tell me. I could hear my husband, agitated out in the hallway, asking about me. It had taken a long time for me to come out of the anesthesia and he was nearly frantic by now.
They let him in and he walked up to my bed. "It's a girl, and she has Down Syndrome." I remember thinking, "Down Syndrome isn't dead. We'll deal" and being so incredibly thankful we hadn't lost our little girl.

They brought her to me shortly after. She was tiny and beautiful. She weight only 6lb 9oz, almost 2 1/2 pounds less than my previous baby. She was hooked to an oxygen tank and sound asleep when I first saw her. She had a head full of red hair. I was mesmerized by her.
I don't quite remember the order of some things, I do remember pretty quickly they told us about the hole in her heart. That's why she was on oxygen, though she was doing extremely well. They had brought my husband to look through the surgery doors when she was first born and he said she was screaming her head off and her arms and legs were going like crazy. Her apgars were 9 and 10, almost unheard of for a baby with Down Syndrome, especially considering the heart defect. The doctors were laughing because she'd settle for a minute, then that bottom lip would stick way out and she would begin screaming all over again. It was a look we grew accustomed to as it usually proceeded a cry when she was startled.

This was the only time I got to see her in my room, but it was the middle of the night and the floor was not busy so they brought her to me, the nurse had to stay because of the oxygen. By afternoon that day I was walking to the nursery to be with her.

This is her first bed in the nursery. They wouldn't let me pick her up because of all the wires. It looked much scarier before they explained what everything was. Most of it was monitors. She had oxygen and later a feeding tube in her nose for a couple of days, until she could figure out the suck/swallow/breathe pattern needed to eat.

I cried a lot. Afraid because of the heart defect, missing my baby terribly as I'd never had to be without my new babies like this before. I felt like they didn't want me in there with her and I desperately needed to be with her.During the night she was moved to this bed, which was a "step up." She was out of the special care nursery and in with the regular isolettes. Her doctor had come in and told us he'd left orders that my husband and I could be with and hold her any time, day or night, as long as we wanted, and if there were any problems we should contact him.

She spent a couple of days in a bili-bed, the only time she could be out was for feedings. I went for every feeding and the nurses often were conveniently busy when the feeding was over so I could hold her a little longer.
I'm sure they must have thought we were the nutty old couple with the crazy hours. My husband was working two jobs. He had taken a second full time job, mostly for the insurance (which unfortunately didn't kick in until after her birth) so he worked until 11pm. He'd stop on his way home to see us for about an hour before he headed off to bed.
Here is the first time I saw her without tape and tubes on her face. I could hardly wait to get her home at this point. She was born at 1:30am Tuesday morning and Friday night I was discharged. She would have to be able to keep her O2 sats up to 90% consistently before she could come home. The monitors can drive you crazy after a while. I noticed every little blip and variation and much of that happened when I held her, probably more because the wires were being moved than any physiological change, but it was still disconcerting.
Saturday morning I stayed home with the other kids, and around noon went to spend the afternoon at the hospital. I had called in the morning and they said she was off of the oxygen, but by noon she was back on again. I stayed until dinner, went home to have dinner with the family and then both my husband and I went back for a few hours in the evening.

I arrived the next morning to this:
No oxygen, no hat to help her keep her temperature. All traces of tape were gone and she'd been without it long enough that even the red marks were gone. I sat in the rocker by her bed, just watching her sleep. The numbers on the monitor were good and they were nice and steady. The neo-natal doctor happened to be in there working on paper work and told me it was ok to take her out. I told him I knew, but that the monitors looked so good I didn't want to rock the boat. He laughed and told me she'd be going home that day, to go ahead and pick her up. I quite happily obliged.

My husband had just dropped me off at the hospital and had gone on with the kids to church, He wouldn't even be coming back for a couple of hours or so, the plan was that he would bring the kids home after church and then join me for a few hours in the afternoon at which time we'd figure out the rest of the day. I had no way to tell him we were coming home. I could hardly wait for him to get back!

The discharge process takes forever, by the time we were ready to leave it was about 3:00. I don't think I've ever dressed a baby so quickly in my life, I couldn't wait to get out of there. How excited the kids were when we arrived home with her! They had seen her only a couple of times through the nursery window, once from a distance the first day in the original bed and the other the night I went home. I helped bathe her, then fed her before we left and they weighed her right in front of the window and held her up for the kids so see up close. They all quite eagerly took turns holding her. Our oldest son was on a hunting trip and wouldn't be home until the next day, but the rest of us spent the entire day Sunday camped out in our bedroom. It was so good to be home!

The nurses were incredible. A couple of them would whisper to me how they "fought" at each shift change over who would get Ruthie to care for. They went out of their way to make things easy for me and to get me answers when I was having trouble asking the right questions. Though the week seemed interminable and stressful and scary at the time, I look back on it fondly now, in large part due to the wonderful care we both received.

She arrived home the Sunday before Thanksgiving. For the next couple of weeks we had to see the pediatrician every few days to have her weight and O2 sats checked. When we'd gotten through those first couple of weeks without incident, those visits weren't necessary.

Our pediatrician at the time was also a pediatric cardiologist, so he handled the first tests to find the extent of her defect. It was decided that this was not something that had to be fixed immediately (at first, there was talk of correction before she ever came home) and we could wait until after New Year's, when our new insurance would then be active.

We took her in that first week of the new year and soon after learned they wanted to do the surgery in early April. The hospital where the surgeon is was about an hour away so there was no going back and forth, I couldn't have left her there anyway. We were told she could be in for 7-10 days and to plan accordingly. Her surgery was Wednesday morning and I think Tuesday and Wednesday were two of the most stressful days I've ever had to endure.

We had been well prepared for what to expect when she came out and they explained all the tubes and wires.

I was told to expect setbacks, that often heartrates or blood pressure went a little wonky and they'd give meds and it would settle down again. She didn't have any. Her surgery was Wednesday morning and we were discharged on Friday morning. We ended up having to hang out in a room all day because we didn't expect to be going so early and my husband couldn't get there until 9pm.

Here she is on Saturday, only 3 days after open heart surgery.
Here are some pictures from our vacation in North Carolina, just a few months later.

And here are a few more current pictures.

Ruthie is doing incredibly well. In spite of the warnings that her health might be precarious (people with DS are prone to ear and respiratory infections, and a myriad of other difficulties, health-wise) she has been very healthy. She's only had a couple of colds and a short bout with the stomach flu, none of which required doctor visits.

Her fine motor skills are excellent, her gross motor skills are good. Right now we're working on running and jumping. Her speech is slow, but she knows enough sign language to get across what she wants and in the last few weeks has been attempting words much more often, using the ones she knows more regularly and often responding verbally instead of signing, which are all very encouraging. Her receptive language is excellent, it's clear she understands most, if not all, of what is said to her and around her.

There is probably much more here than there needed to be, yet I feel so much was left out. I hope that this gives those interested a sense of what absolute joy she brings to us all.



tirane93 said...

beautiful child, fortunate parents!

Mad about Craft said...

I've been waiting ages for you to tell Ruthie's story and I am so glad you have. She is a beautiful little girl!!

Bren said...

I will never forget the day you called me from the hospital. I was so proud of how you handled this. As a mom of a special needs child, you know I think it is a privilege to mother these kids. Ruthie could not have a better set of parents!!!

CONNIE W said...

Dear Little Ruthie who's a little angel if I ever saw one.

I know about heart defects and surgical repair, my sister's son was born with one. It wasn't a happy ending.

Thank you for sharing her story.

Marilyn R said...

I wish I could give Ruthie a big hug! What a blessing she is and a very special little girl!

loulee1 said...

She is a beautiful little girl who is very lucky to have you and your DH as parents. ((Hugs)) for you all today.

Niki RuralWritings said...

What a cutie she is! Thank you for sharing her far :)

Andrea said...

What a wonderful story ! Love to Ruthie and you all.

Sandy said...

Sue, thank you for telling Ruthies story!
I know that she is a special girl just wanted to tell you that she has special parents too ;-))

BTW - first time I have seen the mystery box of fabrics - they are sp pretty .. and you deserve them.

Hope the van is progressing well.

Wendy K said...

What a beautiful story, as a Mum with 'Angels from Heaven' too I know how much you and your family must love your little Ruthie, Thankyou for sharing.

Pam said...

Thank you for Ruthie's story. My daughter had a little boy on April 2nd and he has Down Syndrome. He is just the cutest little baby. He was only 4 lbs 14 oz. It is so nice to read such a lovely story and see how beautiful Ruthie is.

Winona said...

Thank you so much for sharing Ruthie's story with us. She is a darling little girl. I always look forward to pictures of her that you post.

Jo said...

A beautiful, precious little person! Thanks for sharing that story.


Passionate Quilter said...

I've read your blog before and never went back too far to hear about Ruthie. I took the time tonight and am glad I did. Thanks for sharing. I have my own DS girl, but she's 27! I had her when I was not quite 24..and let me tell's been a wonderful ride through life! Lots of scary times and tough times, but wouldn't give any of them up. Enjoy every second with her...and it sounds like you do. :)