Advocating

It's been a loooong time since I've written here. I originally used this blog as a place to write about my struggles with pregnancy loss. Then when I found out the baby boy I was carrying had Down syndrome, I assumed the blog would transform into a place to record the struggles that would come with that diagnosis. The fact that I haven't written on this blog for so long is a testament to just how seamlessly Will's addition to our family has been.

This is mostly due to Will's sheer awesomeness. He has had such a healthy first 18 months. His development is slow at times but always steady. He is an easy, happy baby. 

But the easy transition is also due to the supports we have. One such support has been Delaware County's version of the Help Me Grow program. I found out over the weekend that the program as we've known it was at serious risk. This brought my first real need to advocate for Will and stand up for what I know is right for his continued growth and development. 

I had a phone call with the director of the program to express my dissatisfaction with proposed changes. In the end, she conceded that even if they voted to make the proposed changes, I could keep the services as Will's been receiving them. I almost felt satisfied. At least it wouldn't affect my son. But then I thought about the families that would come after us who wouldn't be given that choice. In the end, I decided I should still work to convince the board to vote against these changes. Not just for Will, but for all young children in Delaware County.

Here is that letter:

Dear DCBDD Member,

We are writing to urge you to vote against the Primary Service Model as the method of delivering early intervention in Help Me Grow. When our family moved to Delaware County and then soon found out our, then, unborn son has Down syndrome, we were told time and time again how wonderful Delaware County’s Help Me Grow services were because they allowed parents to choose their providers and have a real voice in the services their children receive.

Once our son Will was born, we quickly requested referral into the program we had heard so many great things about. Will sees three highly qualified professionals who are trained in their area of expertise. We have chosen each of these therapists through referrals from other satisfied parents. We are deeply concerned that it is up for consideration to take away our choice as Will’s parents about who will provide his services.

We are even further upset by the idea that his services will be changed from direct therapy to consultative.  Each type of therapy requires a specific set of skills and training, so why does Delaware County believe they can have one person deliver the services for all three types of therapy? You know the common saying, “A Jack of all trades is a master of none?” We want the very best for our son, and that means he should be seeing each type of specialist, not someone bringing us secondhand information from another specialist.

Finally, as taxpayers who recently voted to continue DCBDD funding, we are greatly concerned that this change is proposed. No matter what jargon is publicized, we believe that this an attempt to cut costs and that it does not have our child’s (or anyone else receiving Help Me Grow services) best interest at heart. Why else would you consider taking something great and making it mediocre?

Vote no on the proposed change to Primary Service Model and maintain excellence in Delaware County!

In the end the board passed the proposed changes with a 4 to 3 vote. I can only hope that Will's services will in fact continue as they've been. And as disheartened as I am about this decision, I know that I did what I could.

Deflated

On September 15th, I had a growth ultrasound to check on Will due to the high possibility he had down syndrome. He looked good on the screen as I got what turned out to be the last look at him before his birth less than a month later. That made a whopping 16 ultrasounds in a 36 week pregnancy!

Later that week I saw Dr. L.
     "I know you don't want me to say it, but I just don't think the baby has down syndrome," she said, walking into the room. She was right, I didn't want her to say that. I had told her two months earlier, the last time she's suggested this, that we had already accepted the diagnosis and it would be best if I just continued the pregnancy expecting Will to have Down syndrome. She based her suspicion on the fact that nothing abnormal was found on the echocardiogram and that the only soft marker, an echogenic focus on Will's heart, had already resolved.

With her renewed suspicion, I asked about the measurements of Will's femur and humorous bones. I knew from reading that these long bones are often shorter when a person has Ds. Dr. L admitted that was a good question and looked it up.

"Oh. I guess I change my mind," she stated as she realized Will's femur measured in the second percentile. And just like that, the hope that I hadn't known I had let in for those few minutes was gone. My balloon deflated.

My mom thinks it was completely irresponsible of Dr. L to share this opinion. If I had not been so accepting that Will had Down syndrome, I might have latched onto my doctor's doubt and not let go. I, however, think Dr. L just wanted so badly for the test to be wrong. I believe she hoped that after all we'd been through, this was just a false alarm.

One Year

October 5th marked the one year anniversary of Olivia's still delivery. That evening, our family did a few things to honor her memory. Lily and Ella got to decorate cupcakes at the grocery store, which means they adorned cupcakes with up to 4 trinkets each. They chose things like It's a Girl and Happy Birthday along with items they like best such as gumballs and Reese cups. We enjoyed the cupcakes before dinner then headed out to Olivia's tree.

Outside, Lily read Sleep Baby Safe and Snug, which is the book Troy and I read to Olivia while we held her in the hospital, and Ella sang a rousing rendition of happy birthday.

The next night, we joined many other families who have lost babies in pregnancy or infancy in a garden ceremony. It just so happens that October is pregnancy and infant loss month, so this yearly event coincides almost exactly with Olivia's anniversary. We added 5 tags for our 5 losses to a memory tree. We wrote messages to Olivia. (Ella's: Come to me so I can hold you.) Every family got to speak the name of their baby or babies for all to hear. Lily asked if she could be the one to speak Olivia's name and did a great job in front of the large group. The event culminated with everyone planting a tulip bulb for each of their lost babies. We planted 5. Four bulbs circled around the 5th, which we planted with our messages to Olivia.

These events were all done in joyful memory of our daughter and sister who we grew to love in such a short time last year.

Caught off Guard

It's been months since I've cried about Olivia. That's not to say I don't think about her. With Ella still bringing her up weekly, I can rest assured that her memory is safely being kept. But now it's October. It was at my 16 week appointment on October 2nd that we received the news that Olivia had died.

The fact that October and this anniversary was approaching has been on my mind, but I was completely caught off guard by my emotions at my non stress test for Will yesterday. I showed up doing just fine. Then the receptionist informed me they were doing flu shots that day. Immediately, I was transported back to October 2nd of last year. That fateful appointment had begun with a flu shot to protect me during a pregnancy that had unbeknownst to me already ended.

I somewhat hesitantly agreed to the shot yesterday after confirming that it could help protect Will since he'll be too young to be immunized himself this year. I just had specific directions for the nurse. I told her I would need to already be hooked up to the heart beat monitor so I could listen to Will's heart beating while she gave me the shot.  I also said that she should wait to take my blood pressure because it was surely high as that point. We followed my protocol to a tee, but as soon as the nurse went to leave me alone to continue my NST, I felt the tears coming. Apparently, that shot was enough of a trigger to send me over the edge when combined with the calendar change and being at the doctor's office.

The nurse offered to sit and talk with me, and she ended up staying the whole half hour of the test. I got to talk about Olivia like I haven't done in months. I quickly went from crying to just remembering and sharing. I'm thankful that the nurse dropped everything else that I'm sure was calling for her and just kept me company and asked about my baby girl.

Never Forgotten

In all this focus on Will, Olivia is not forgotten. Ella, especially, continues to remember and honor Olivia as her sister and as a member of our family.

With the end of the school year, both girls brought home portfolios containing their work from the year. I leafed through, interested in what they'd done and once again amazed that these books have become the norm each year.

I came across a family portrait from December in Ella's book. Ella's drawing had Ella, Lily, Mommy, Daddy, and Olivia. My heart melted.

She also enjoys counting how many boys and girls are in our family. Always, Olivia is included.

This week, Ella asked to hold Olivia in her "bottle". We got her down from Troy's dresser and sat with her. Then Ella decided we should read Olivia's book from the hospital to her and we did. Next she wanted to let Olivia spend time with the pink bear from the hospital. This led to looking through all of Olivia'a belongings, and when Ella found the bunting Troy and I had held Olivia in, she placed Olivia'a urn there. Finally, Ella placed Olivia back in the heart shaped case, satisfied that we'd spent our time with her.

Anatomy Scan

On March 14th I wrote this:

For a week I prayed that this ultrasound would be reassuring. Specifically, I prayed that I would see the embryo had implanted in the right spot and that there would be a heart beat. At 5 weeks and 6 days, it would be right on the brink for this ultimate sign of life.

In case I would get what I prayed for but nothing else, I continued my prayer, hoping to cover all my bases. "Please let the baby continue growing until I deliver him or her, healthy in November." But I didn't stop there. "And let us raise him or her so he/she can grow until old age."

Then at the end of April we found out that Will would have Down syndrome. But I prayed for a healthy baby, I thought. Surly my prayers had not been answered. So my fledgling attempts at prayer ended a little more than a month after they began. In the seven weeks since then, there has been a sense of suspense while waiting for the results of the anatomy scan.

On Tuesday, Troy, the girls, and I went for the ultrasound. I had apprehension about bringing the girls. What if we received bad news with them there? But Dr. L had brought up the idea of them coming and I figured if she thought it was ok then we would do it. She also assured me that if she had to give us any negative results, she would do so in a way they wouldn't understand.

During the ultrasound I was on pins and needles. It was such a different experience knowing there was a very real possibility we would find something awry. With other anatomy scans, my primary focus was on finding out if the baby was a boy or girl. The possibility of finding something else really didn't register. This time felt different. I tried to read into the things the tech said or didn't say. I watched the images of Will on the screen but mostly I was focused on the appointment to come after where we would learn any results.

When it was over we got a few pictures to add to our growing collection. Then we went on to the real appointment. Dr. L shared that the only finding of note was a bright spot on Will's heart called an echogenic focus. She explained that it has no impact on function but that it is a soft marker for Down syndrome. She said, "Here's what I would say if we hadn't done the earlier testing: This finding can be an indication of Down syndrome and we can do further testing. But usually all turns out normal." Then she and I commented on how statistics and odds really mean nothing when we're talking about me.

Later that night I got a message from her that after reviewing all the images from the ultrasound, "other than the bright spot on the heart, the baby looks healthy."

I can't help but think back to my prayers for a healthy baby. We are certainly not completely in the clear yet. The next big hurdle is a fetal echocardiogram (a detailed ultrasound of the heart) in mid July. But the preliminary findings are there are no major structural issues. He appears healthy.

Final Loss Milestone

It's been eight long weeks since loss milestone four, and I am finally passing my final loss milestone.

It was at my regularly scheduled 16 week appointment last October that I learned the devastating news that my daughter no longer had a heart beat.

The final days leading up to my appointment today were mentally trying. I found myself reliving the image of my lifeless baby on the ultrasound. I heard sound bytes of my doctor telling me the news. I was terrified of receiving this news again and frightened of the resulting medical procedures and psychological anguish.

But, Dr. L came in and immediately went to the ultrasound to show me a baby with a beating heart. Will seemed to be sleeping, but Dr. L knows I worry if I don't see him moving around. We watched for a while and saw him touching his face, crossing his legs, and rolling over.

With this appointment, I ran out of prescheduled appointments. I had been previously unwilling to plan anything past this milestone, but now that it's behind me, we went ahead and scheduled a 17 week appointment and the 18 week anatomy scan.

This anatomy scan will be my next point of anxiety since it is likely to reveal any defects accompanying Will's Down syndrome. Dr. L reminds me that the weekly scans haven't given her any red flags but the 18 week scan will be with a much more powerful machine.

So now I wait again, but hopefully the most difficult wait is behind me.