Our new found forever friends (other parents in the NICU) have become part of our hearts and constant prayers. As we pray constantly for our own child still fighting in the NICU, we pray also for the other babies and parents who so intimately understand the long journey home. Many of those parents are even taking the time to follow this blog, and we are honored. We all so look forward to the day that we can watch our kids play together and celebrate birthdays and other everyday moments, which to us will always be miraculous and joyous. It is always such a gift to hear encouraging news, not only about Avery, but also about all of the other babies while on our visits.
Many of the parents had told us to, “Watch the nurses…. their subtle behaviors will tell you how they are really doing.” We felt that “shift” the last few days and it is a simple, but glorious and noticeable shift. Both of Avery’s primary nurses have been smiling more. Her day nurse actually said, “I think she’s REALLY strong,” 3 separate times today, and said the words, “she’s doing good!” for the first time. Her night nurse actually used the word “great” tonight for the first time. They both now have more than one baby to care for at at time, which is another sign that Avery is requiring less personal attention and they are able to let her rest more. Although it feels a bit odd to say it feels better to have someone spending less time with her, it’s obviously a good thing in this case.
Avery’s eyes are big and bright and she’s already trying to peel her breathing tube tape off of her face with her strong fingers. She pulses at our finger every time she can and she is taking a lot of breaths on her own. Her oxygen requirements have remained fairly steady at a low number for the last several days. Her blood gases were much better today than the last few days and she’s remained off of the blood pressure medicine for over two days. Her feeding continues to go well, and she’s up to .6 cc every hour, which will continue to go up by .1 cc every 12 hours as long as she tolerates it. She has lots of diaper changes, which is a huge relief for us. Overall, she has had several stable days, which for the NICU is always a positive thing.
We received several more success stories today via email and phone from former NICU parents we’ve never met, who instantly feel like family due to their intimate sharing and compassion. We look forward to the days when we have our wits about us again and will be able to have more in-depth conversations and sharing with all of these kind souls. How wonderful it will be to meet their beautiful children! We’ve heard from numerous families who received even more significant reports of difficult issues than Avery has received, whose children are thriving in every way. One woman confided in us that her daughter was diagnosed with bi-lateral grade 4 brain bleed in the NICU. Her only “issue” as a bright 2nd grader, is that she needs glasses. (Although we were originally told that Avery had a bi-lateral bleed, we were then told last week by the Neurologist that Avery has this only on one side and that she her brain can potentially overcompensate in some ways as it continues to form.)
We know that a big milestone is her one-month birthday, which will be this coming Monday. Then, the next anticipated event in the coming few weeks will be the shunt they will have to put into her head to drain the fluid into her abdomen so she can eliminate it. This is something that is not unexpected for her age and done fairly often with preemies, however it’s another surgery. Never ideal for anyone, but especially not someone of her fragile state. We have been encouraged by the nurses (again, something we’re paying close attention to) that she will be a lot stronger than she was for the last surgery, as she’ll be several weeks older by then. We learned today that when they do that surgery they will have to restart all of her feeds again back to zero and build them back up. Although it will be a very another difficult thing to face, we are optimistic and have faith that with all of the continued prayers and love she is being given, that she will warrior through that too and prove her strength yet again. We are so proud of her and are so deeply in love with her. My heart continues to ache every moment that she is separated from us behind the plastic that sustains her, but we believe her twin sister, Sienna, is giving her even more strength in each moment and holding her hand when we are not present.
We received the below poem today from a mother who has had 4 preemies in 3 separate pregnancies. Bless her heart. It moved us both to tears. I will share it here in honor of all preemie moms. Thank you all for loving us.
“How Preemie Moms Are Chosen” by Erma Bombeck
Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. This year thousands of mothers will give birth to a premature baby. Did you ever wonder how mothers of preemies are chosen?
Somehow, I visualize God hovering over Earth selecting His instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.
“Armstrong, Beth, son. Patron saint, Matthew.
“Forest, Majorie, daughter. Patron saint, Ceceila.
“Rutledge, Carrie, twins. Patron saint… give her Gerard. He’s used to profanity. ”
Finally, He passes a name to an angel and smiles, “Give her a premature baby.”
The angel is curious. “Why this one, God? She’s so happy.”
“Exactly, ” smiles God. “Could I give a premature baby a mother who does not know laughter? That would be cruel.”
“But does she have patience?” asks the angel.
“I don’t want her to have too much patience, or she will drown in a sea of self-pity and despair. Once the shock and resentment wear off, she’ll handle it.
“I watched her today. She has that sense of self and independence that are so rare and so necessary in a mother. You see, the child I’m going to give her has his own world. She has to make it live in her world and that’s not going to be easy.”
“But, Lord, I don’t think she even believes in you.”
God smiles, “No matter, I can fix that. This one is perfect. She has just enough selfishness.”
The angel gasps, “Selfishness? Is that a virtue?”
God nods. “If she can’t separate herself from the child occasionally, she’ll never survive. Yes, here is a woman whom I will bless with a child who comes in a less than perfect way. She doesn’t realize it yet, but she is to be envied.
“She will never take for granted a spoken word. She will never consider a step ordinary. When her child says ‘Mommy’ for the first time, she will be witness to a miracle and know it.
“I will permit her to see clearly the things I see – ignorance, cruelty, prejudice – and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side.”
“And what about her patron saint?” asks the angel, the pen poised in mid-air.
God smiles. “A mirror will suffice.”
Motherhood The Second Oldest Profession