Remembering to breathe…

Inhale.  The doctors do not think that Avery has any problems with her kidney function after all.  Exhale.

Inhale.  They have indicated that they are now, “trying a few different things” to see if they can reduce her fluid output, by reducing her fluid input.   Exhale.

Inhale.   They’re giving her so many fluids that, “it could be that they haven’t quite got the balance right for her particular situation.”   Exhale.   “Or, it could be her brain telling her kidneys to put out more than it should.”   (If you are the parents… Inhale 10 times here)

Nothing is certain.  Everything with these little ones, even after our two doctors combined 60 years of experience in the NICU, is “a bit of trial and error.”    Although we are eternally grateful for their expertise, intelligence, and overall brilliance, these are not comforting words.  Exhale.

Inhale.   Although the beautiful babies in the NICU are the ones with breathing support, we parents are all literally reminding each other daily to breathe.  I think at least once a day, a loving nurse looks us straight in our worried, tired, and hopeful eyes, and says, “breathe.”

Exhale.   Today, Avery’s original admitting nurse, Melissa, handed us a large bowl of seafood gumbo that she made for us.  It was delicious and very kind (especially from someone who works a 12-hr shift on her feet that starts at 7am).    She is caring for Avery again for the first time in a month and she was so happy to comment on how much Avery has grown, and that she sees huge improvements in her respiration.  She thinks her lungs have completely recovered.   Inhale.   Exhale.

The ultrasound they did overnight on Avery’s brain shows “near stable.”   We learned today that this is good news and really means, “it hasn’t worsened.”   Inhale.   Logically, in the medical world, saying “stable” would be too definitive of a phrase when there are so many unknowns, so they always say, “near stable” when nothing has gotten worse.   Although we have to await the doctor’s explanation, we were told that the doctor’s notes indicated that the hemorrhage on the right side may actually have gotten a tiny bit smaller.   Exhale.  We’ll take it!

Inhale.   Exhale.    The Neurologist was coming by to take a look at Avery today, so we should get their perspective tonight from Avery’s doctor on how she’s doing and, God willing, we’ll hear that nothing is urgent.   We need her to grow much bigger before any head surgery is done.   Inhale.

I (mom) actually got to hold her in my arms yesterday, which was amazing.  Exhale and inhale 30 times.  I could have sat there for 20 years.  Although she was wrapped tightly in blankets and wraps, and wires were surrounding us on all sides, I tried my best to block out the sounds and sites and focus on her perfect little face and bright eyes.  It’s been one month since she was born and separated from our arms.  A fate I would not wish on any soul.   Inhale.   She had her tiny (but long like her dad’s) fingers up next to her face and her eyes were opened wide looking right at both of us.  Her expressions and the machines showed that she was very happy with us being able to do so.  Exhale.   Because she still has a breathing tube, it’s a significant production requiring 4 nurses and a respiratory specialist to help get her from the isolet to our arms.  It’s worth it.  Inhale.   Thanks to Nurse Anne’s prodding, the Doctor put in orders to let us hold her several times this week as she’s feeling up to it.   Exhale.   Thank you dear Anne.   Those are moments we will treasure forever.

Inhale.  We hope that we both will get to hold her tomorrow.   And,  we so deeply look forward to the day when we can hold her in our home and actually not have to remind ourselves to breathe.  Exhale.

Inhale…

"Auntie Sarah and Uncle Joaquin" kindly bought a cake for us to celebrate Avery's one-month birthday. I am saving the candle for her one-year birthday party!

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11 Responses to Remembering to breathe…

  1. Angel Roggenkamp says:

    Amazing…… I trust she will be fine. When you can hold her and she is happy. It means she wants to live. She needs you to give her all that love that support. Encourage her. BREATHE is correct. Something that us healthy people take for granted without even knowing it. It never really crosses our minds until we feel we cant. Then and only then do we know how she feels. Being a mom, I can relate to how you feel holding her. But, being a mommy to tiny ones that need so much help I can not. I feel for you. I dont want you to go through this. But, what I was told during a hard time in my life is GOD ONLY GIVES US WHAT WE CAN HANDLE. And, both you and Quintin are doing perfect with this assignment. Love you all

  2. Nicole Malachowski says:

    You have so eloquently captured in words what only NICU parents can truly understand. A minute by minute roller coaster of emotions…sure there are days with setbacks, but also many moments of love, joy, and pride in our little ones. People sometimes mention that I seem to ‘love’ my preemie (2.5lb) twins a little differently than other moms love on their kids. You bet your buns I do. There is just a certain appreciation for all the little things they do…everything is a miracle. I’m sorry you are all going through this, please know lots of people are supporting you. Give Avery a pat on the back from me…. Also, try to get some rest…and don’t forget to eat.

  3. We’re holding our breath simultaneously with you every moment – you’re not alone. Thanks for the good/upbeat update. I am so glad you got to hold Avery. I remember that moment with Bradon in the NICU like it was yesterday. You both write so beautifully and bare your souls to all of us every day. You remind us to be grateful for the little things and cherish every moment, even when feeling exasperated at times! Thank you and God Bless you all.

  4. Susan Mcmurray says:

    So happy to hear that you got to hold your little girl. What a gift! Such a fine line between knowing how good it is for her to be held by her loving parents and making sure that it is safe for her with all of the other support she needs right now. In the coming weeks as she gets stronger and grows I hope that balance will shift to it being safer and safer for you to hold her more often.

    Praying for good news tonight.

    Much love from CA.

  5. Erin and Steven Shillingburg says:

    oh such good news! all of my FB friends who are following will be so happy to hear this news! i am sure it was so wonderful holding your princess today, and i bet she loved it just as much!

  6. Jen Klima says:

    As I read this post (as with all of them) I feel like I have to remind myself to breathe… I was happy to read that it looks like little Avery’s kidneys are functioning and also that you were able to hold her. I am sure that was heart warming for both you and Avery. I can’t wait to tell her how amazing her mom is!! Cal and I talked for a long time today about both Avery and Sienna (Eddie is with his grandmom for a few days) … Cal wanted to know what heaven was like. I told him it was perfect, and he wanted to know if there were storms in heaven… I told him only if you like storms. (He doesn’t). He seemed comforted knowing Sienna was in this perfect place. I told him Sienna was now a guardian angel for Avery. We’ve been praying together with our bracelets at 10am every morning. Thank you for the continued updates… I look forward to them each day. Keep breathing…

  7. Diane Sheridan says:

    I am positive you will see great improvements in Avery’s progress now that you are allowed to hold her. I remember the NICU nurses letting me hold Brooke before the doctor said it was okay (we had to sneak) but it made a world of difference even if it was for a couple of minutes. It did take a while to check all cords and wires and wrap her in a ton of blankets but it was obvious she was happy. You and Quin are doing a great job with her and she is liking all of your attention and that of her special nurses. Two friends have started separate causes/prayer chains for Avery and her family. Prayer is powerful and there is power in numbers…love you!

  8. Heidi says:

    Continued prayers every day for you all…..that you continue to hold onto the strength that you have, that you continue to inhale and exhale, and that Avery continues to get bigger, stronger and more determined to strive every second.
    Sending so much love your way…….

  9. andrea says:

    My alarm is now set for 0955 every day. Happy 1 month, Avery- keep on growin, baby! 3 lbs- you can do it!(and I agree with Leigh- u guys really are amazing writers!)

  10. Joe Raia says:

    Robin,
    We had only talked on the phone a couple of times yet I could hear so much of your energy and excitement. After not getting to your email and blog until this evening, I had to write to tell both of you that our prayers are with you, Avery and Sienna – who will always be with you. Your words, your openness are an inspiration to all of us who can not even imagine what your world has been like over the past month. Thank you for sharing and reminding us all of the blessings of family and friendships new and old. May Avery continue to grow stronger and stronger and be that daddy’s little girl you’ve described. And, on a more tangible and lighter note – just let me know when you could use some good homecooked lasagna. It would be my honor to deliver it. May God bless you all!
    Joe Raia

  11. Susan Lennon says:

    WOW! I have tears in my eyes Robin as I picture you holding little Avery with her eyes wide open staring at her Mommy and Daddy♥she feels your love♥and she is content, this is such wonderful news….what a wonderful nurse Anne is to request this for you all….on a side note I have to say, “You both are such beautiful writers.” Thank you for sharing so much of yourself with all of us…
    How would I go about getting the Power of Pink bracelets? Would someone be able to email me the information if they had time? Everyday I am wondering how your little princess is doing and also praying for her and hoping you & Quintin remember to BREATHE♥
    HUGS from Maine…

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