Violet's Story: Early August | Still Playing School

Violet's Story: Early August

By Devany | Labels:
I realize that I am only walking through what happened in August in the middle of our current September. My only excuse is that this is work.  To choose to actively grieve is challenging, but much needed progress.  To reread my words from two years ago brings everything flooding back.

Here are excerpts from early August directly from our CaringBridge that I used during Violet's pregnancy to update family and friends privately.  The month was packed with appointments and preparations, so I will break August into a few posts due to length.


Written August 4, 2011
24 weeks pregnant:

Last Thursday we had an ultrasound at Maternal Fetal Medicine. There is not much change. Violet is growing as she should for now. She's a bit small, but not her growth has not dropped off yet, and Dr. B said that can start around 20 weeks so we are lucky she is still growing. He said he still didn't expect her to be more than 4 or 5 lbs. even at term because babies with her condition are always quite small. That will be a big difference from E who was 8 lbs. 11 oz. and shocked us all!

He did a detailed scan head to toe to point out issues she may have. Her heart is still the biggest concern, but her brain is a concern too. It makes me cry just typing that out. Her kidneys are slightly enlarged still. Her face seems to be perfect and we got some good pictures that I need to upload. Dr. B said these babies often look angelic, peaceful, but geriatric. I think that makes sense because she is our angel but she is living her whole life so suddenly.

He wants us to see a pediatric cardiologist to get better details about her heart. We are waiting for that doctor to call us and schedule an appointment and then we will make our next ultrasound appointment for the same day. It should be in 3 - 5 weeks.

After that, we went to the lab to have our blood drawn, but there was a mix up about where they had to send it to and they said they couldn't do it that day. So we are having it done tomorrow.

Lastly, we met with part of our palliative care team. I cannot say enough about them. They let us tell our story and pointed out ways we were complimenting and supporting each other in our time of grief so that made me feel great about our strength as a couple. We talked a bit about a birth plan and different scenarios. We had our questions answered and they gave us a lot of information we've been looking over. I have been reading my copy of A Gift of Time that they gave us, which is a really helpful book about our situation and other parents' perspectives.

Tomorrow morning we have a regular OB appointment (my first since all this news) and we are also going to try again to have our blood taken and we are meeting with Dr. L who will be Violet's NICU doctor.

We also went to therapy together this week. I am getting little things from my therapy sessions, but honestly, meeting with the palliative team was much more therapeutic and meaningful! I am currently weighing the gains from therapy against the co-pay I owe each time I go. I go alone again next week and I think after that I will try to go once a month unless I think I need it more. I am also considering possibly finding a new therapist, but that sounds like more work than it may be worth, too.

We have our non-medical ultrasound scheduled next Tuesday in the evening. I am hoping that gives the Sustaining Grace foundation enough time to contact them and let them know about what the foundation provides. We are looking forward to seeing Violet in a non-medical setting and just enjoying time with her. And of course, we are hoping to get good pictures and videos from that time, too.

Violet has been kicking and jumping so much that she woke me up last night! We love her so much already!


Written August 6, 2011 2:28pm
25 weeks pregnant tomorrow:

Yesterday we met with Dr. L, the neonatologist who will be treating Violet if she is born alive. He was wonderful, reassuring, and had a calming manner that put me at ease. We discussed the multiple possibilities and combinations of interventions we can use for her. We have a lot of decisions to make and things to think about.

We also had our blood drawn so we will get results in a week or two about whether one of us is a carrier. Mr. SPS and I had fun actually getting our blood drawn, joking with the nurse about how Mr. SPS had "great veins" and we each got a band aid with a cat skateboarding on it which E loved.

Lastly, we had our regular OB visit. This was the last time we'll have a midwife. From here on out our appointments will be with Dr. W, a highly recommended and regarded OB. I haven't gained any weight in a month and the midwife and I were concerned about that. I AM eating and she said it isn't related to the fact that Violet is small. So I guess I just need to be forcing myself to eat more frequently and stay hydrated. She said this could be why I was feeling those dizzy spells too (drops and spikes in blood sugar due to not eating/eating sweets). My next appointment is also the lovely one hour glucose test. I cried when we listened to Violet's heart beat on the doppler.

After all those appointments and waiting in the hospital lobby seeing laboring mothers and families coming to visit new babies, I was very drained. I shut down a bit on the drive home and was exhausted when we got back. It never ceases to amaze me how much our emotions are tied in with our physical well being and symptoms.

Despite being tired, I went out last night with some wonderful ladies and enjoyed visiting, music, good food and drinks, and a breezy night at The Hotel Hershey. Today my parents and Andy came for a visit and Violet kicked Andy and Nana.

Please don't hesitate if you are around me to tell me if you want to feel Violet if she is kicking. With both my pregnancies I was never bothered by hands on my belly and with Violet especially I want everyone who would like to feel her to be able to do so. She's a mover!

Scott from Sustaining Grace called me today and left a very comforting message about how our ultrasound is covered on Tuesday. It will definitely be a highlight to my week. I can't wait to get a DVD and photos of our little girl.

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