In some ways, Ruthie's story began many years ago because I think that God had been preparing me for her all along.
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.
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 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.
I arrived the next morning to this:
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.
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.