The girls had a fairly stable night last night and an overall good day so far, and are continuing to prove how very strong and resilient they are. We’ve heard several nurses and doctors comment that most adults would have given up days ago, and yet somehow our miniature children fight on. Please continue to strengthen them with your powerful prayers and continual positive energy that is lifting us all up. Each day that goes by is a victory and a tremendous blessing.
We received two of the most thoughtful gift boxes I’ve ever received yesterday, and we will cherish them forever. Sincere thank you’s to Sue, Gerald, Keira, and Shaelin McMurray, and to Ria and Gavin Waugh. Your items and sentiment are truly ‘on point,’ and absolutely authentic and meaningful in so many ways. Our hearts were moved by your understanding and unique perspectives. Also, special thanks to Sharolyn and family for the thoughtful book and to Mike and Joy for taking Riley for an all-day play day yesterday. He barely has moved over the last 24 hours due to exhaustion from his good time. This helps us so much to know he’s happy. All of the support, cards, notes, food, tokens of caring, dog walks, offers for house-cleaning, etc. are all deeply touching to us.
Sienna was as beautiful as ever today, but very bloated due to all of the fluids she had to receive following surgery and she hasn’t been able to eliminate it as fast as Avery. She’s now on a medicine to help increase her urine output and has an air tube on her chin to try to help remove any air from her belly. As the swelling makes her surgical incision appear worse than it is, it’s very hard to see her looking so ‘full.’ She had an ultrasound on her abdomen today that gloriously resulted in a bit less concern for the doctors and us about her bowel functioning, and they’ll continue to monitor it closely. We are supposed to get more detailed information on last ultrasound results from the doctor tomorrow, and they apparently have her scheduled for another ultrasound again tomorrow. Her head ultrasound last night revealed that the bleeding has not worsened and that the ventricles have not expanded, which is very good news. Her blood gases were very good this morning and a bit worse this afternoon. A nurse we haven’t met before, Amy, took wonderful care of her today and said that she has been watching us in the NICU each day. She had wonderful energy and warmth and indicated when I called at 6pm tonight that she was trying to become one of Sienna’s primary nurses because she loves her so much. There do not seem to be enough words to fully appreciate the difference it makes to have kind, compassionate nurses at their side. As a good friend of ours, Katie, is a NICU nurse in Hershey, PA, I have always had a sense that her work and hands were God’s own and required a very special soul. Now, having lived in and out of the NICU for just less than two weeks, I have no doubt that those who care for our most innocent of all beings, are themselves true saints. Every task, movement, and procedure requires intense concentration, an extremely gentle touch, and immense courage. Their unique ability to remain focused and loving despite the endless beeps, alarms, and movement of numbers on countless monitors is nothing short of astonishing.
Last night, Maddie and I made cards for many of our nurses that said, “Thank you for loving my baby sisters.” Maddie (still with orange, blue, pink, and green knotted hair since she had “crazy hair” day at pre-school yesterday) had an intense concentration as she deliberately picked out each sticker and placed it in the perfect spot on the card each time. Her full name, “Madison,” was then delicately inscribed with purple crayon (blue or red or orange would just not do these cards justice…) Quin then took a picture of Sienna’s nurse, Lauren, holding the card last night while visiting and sent it to my phone for Maddie to see. She lit up like a Christmas tree upon seeing the picture of the card in Lauren’s hand and proudly exclaimed, “Lauren likes me! I’m so happy she got my card and so happy she’s helping to take good care of my baby sisters!” My mom had lovingly gone to the store while she was still here with us and bought Maddie a small backpack of toy baby gear that included things like a milk bottle, a spoon and baby food, a diaper (would you believe that they toy diaper is about 2x bigger than the actual ones the girls are wearing?) and a pretend cell phone. When not making cards and choosing perfect crayon colors to express her sentiment, Maddie spent most of the evening holding her baby doll, “Pinky,” and (her words…) “practicing being a good big sister.” Priceless. I am so blessed to be her step-mom and am in awe of the maturity we’ve seen her exhibit over the last few weeks. One of my favorite songs when I think of Maddie is Kenny Chesney’s, “Don’t Blink.” (if you’ve never seen the video for this song, grab a tissue and check it out on YouTube and I’m sure it will become one of your favorites too.)
Avery looked so beautiful this morning and also maintained a steady night. She continues to hold her own and wiggle and flail her arms and legs nonstop. The doctors only concern for Avery today was her constant motion, and they want to her relax more and not “work” so hard. They actually gave her a sedative so she would not be so active and would use less energy. Every ultrasound we had during my pregnancy showed both girls doing crazy flips and nonstop movement so we hope that this continued activity is a positive reflection of her strength (and of course, may likely be due to her bloodline and namesake “Rose.” I hope this brings a smile and a knowing, “Yep!” for those of you who love her ever-in-motion and ever-giving Grammie, Rosalie. How could her granddaughter, Avery ROSE, not be a bundle of motion even at less than 25 weeks and less than 2lbs?!?) We love you and appreciate you Mom, and are so happy that our darling will share your beautiful name.
As Avery’s eye mask was slightly ajar when I first looked at her this morning, I could see one of her tiny eyelids. I immediately burst into uncontrollable tears with a depth of sadness that I could not possible describe. The tears poured down my face and my body shook — I was processing my inability to kiss her little head and face. With all the tubes, IVs, and extra sedatives following surgery, we haven’t really even been able to hold their hand for the last three days. The incubator felt like a prison cell to me and the plastic that protects her felt like a brick wall keeping me from my precious ones. My emotions crashed today in a really big way. Then, on top of the feelings of sadness and loss of the kisses and hugs that I ache for, I began to feel guilty for not being stronger and sad for my inability to control my tears while doubled over in emotional pain at their incubator. Can they feel their mommy being sad? Do they know that I’m aching to touch them? More tears. Did someone just rip my heart out of my chest? This just feels cruel.
Fast forward to this moment, now 7:38pm, and I’m still aching, and still crying, but not uncontrollably. Today was a fine (praise God) day for the girls, but one of the hardest so far for me. I know that is to be expected and I’m pulling myself together to go back tonight for stories and songs and just to tell them I love them, if even for a moment. Tomorrow will be a new day and I know I will be able to snap back. And, I also know that I will have to allow myself these days of immense pain. With my husband’s strength holding me up and my open hands and heart, I will force myself to continue to turn my babies care over to God, as the grand physician who cannot make a mistake. I will consciously choose to to be kind to myself and accept that it’s okay that my heart is broken for the missing kisses…