Wait, we’ve been here before.

Beautiful Avery (12-19). We are so grateful for how far she's come.

Usually a baby’s move to the step down room is the last move before they leave the NICU. Usually. But after one week in that room and an unexplainable increase in her bradycardia (a term that translates from Greek to mean slow-heart and means just that, a decrease in heart rate) episodes it was decided that Avery would be moved back to the room that she had originally come from. Obviously we were less than excited about this seemingly bad news. And we had seen a similar situation with friends of ours whose son was moved back into his old room, literally the night before he was scheduled to go home. Oh yeah, and instead of the discharge we had been hoping for, today-Monday, we were also told that she would now be in the hospital at least until Wednesday.  My Christmas wish was moving further and further away from reality.

So, this morning as I walked into the room I was not in my best mood. Icing was added to my irritation cake when I explained to the nurse that I did not believe that Avie should have been moved and that her stay in the hospital should not have been extended. Her answer was to basically tell me that I was wrong. After a few minutes of conversational argument I opted to keep my mouth shut as I could see that for one, I was probably wrong anyway and secondly, she was refusing to even hear my side of the argument. Then it happened. While I was feeding a smiling baby who was clearly not in any type of distress, the monitor read that she was having a bradycardia spell. I calmly pointed out to the nurse that these were the same type of spells for which Monday had turned to Tuesday and then Tuesday had turned to Wednesday. It was clear, at least to me, that the monitor was simply not reading correctly. And, as I pointed out to the nurse, we have an apnea monitor at home that Avery will be connected to pretty much all of the time, thus it is my opinion that Avery would be better off at home. Again the argument went to the point where I was being told how wrong I was. I decided that I would be best suited to shut my mouth again and just let Robin do all of the talking when she took over at the hospital. She usually has a cooler head than me.

Then came the visit from the doctor. He first asked how things were going. I shot a look at him that I am sure he felt. Then he asked if I had any questions about when Avie was going to be released and I laughed my snide, sarcastic laugh. He explained to me that he and Avie’s other primary doctor had a long conversation about the topic. Then he asked me if I had her car seat with me and I told him that I did not. He asked if Robin could bring it in and then told me that he hoped to get Avie out of the hospital tomorrow. Suddenly my anger was fading. The doctor ordered that Avery have her car seat challenge (where they place the baby in the car seat for ninety minutes to see if they’re ready for the trip home). I told him that even if she has a problem with it we have a car bed that she can ride home in and he explained that he would still prefer us trying the car seat first. I love this man.

I called Robin and asked her to bring the car seat. While I was on the phone I was trying to get Avery to finish the last of her bottle, with the nurse’s help. I had explained to the nurse that I thought Avery had taken enough, but she insisted in trying to get her to finish the bottle. The baby responded just as I thought she would, with a bradycardia. As I woke her up and then dealt with the reflux that she usually has when she is forced to eat after she is full, I worried that this incident would lead to yet another day. While I do not doubt the abilities or training of the these nurses I fear their motivation at times.

We are still hopeful for a pre-Christmas release from the hospital, but we know that whether she is home before that day or not, our days of visiting her there are coming to an end. Hopefully.

Avery pointing to the exit sign?

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9 Responses to Wait, we’ve been here before.

  1. Sharon Boisvert says:

    Merry Xmas I am so excited for you all.

  2. Tammy Tanner says:

    What a wonderful Christmas gift it will be. I am sooo excited for everyone!! Good luck and God Bless.

  3. Susan Lennon says:

    Quintin and Robin…

    This is absolutely great news for you and your little Avery Rose. It truly sounds like you know your daughter so well and her needs. Lucky little girl. My thoughts and prayers will continue to be with you all as your journey home is OH SO CLOSE:)!!

    Many hugs from Susie in Maine

  4. I am praying that your Christmas Wish is granted. I can certainly empathize with your immense frustration and desire to get Avie home. Bradon failed his car seat test 3x and also had increased “bradys” the week before coming home and at times these incidents felt worse than almost everything else we had dealt with. The end of the NICU road is nearing and all I can do is let you know that you all remain in our daily prayers and we are sending good wishes your way.

  5. Erin and Steven Shillingburg says:

    i am praying that you all get your Christmas wish! you know your child better then any one and that nurse seems a bit on the pushy side! ((hugs)) I hope that your next post is full of coming home pictures!

  6. Nicole Malachowski says:

    It’s so close…we can all feel it! You know your daughter best, and are her best advocate. My son had the same Bradycardia issue…when he ate too much and the reflux set in. Smaller more frequent feeds helped him. Sounds like he and Avery could have a conversation on the topic, and many others. Prom maybe? Our whole family is pulling for a gold-star car seat test. She will be home soon…soaking up your love, admiring her Beach Front property 🙂

  7. Kyle Ward-Dahl says:

    So excited to see pictures of her in her beach-front property!!!! Almost to the end, stay strong, and Merry Christmas!

  8. Lily says:

    This is soooo Goood!!! The day has finally come. I can relate to all that…Kalela was sent back to 203–wasnt funny at all! And her going home changed a lot…from 24 hrs, 48 then 72…but yes, Avery is ready to go home: you will be amazed on how well they cope with just mummy & daddy taking care of her! Merry xmass–what a wonderful Gift!

  9. Erin Curran says:

    Quintin, we’ve never officially met but I was in the conference room on the day you met Mary Beth Hazelgrove. I’m one of the March Of Dimes parent support volunteers. I was making sample scrapbook pages while you and Robin chatted with her. She later told me about your little angels and about this blog. I’ve been following it ever since. Crying and celebrating right along with you guys.

    I’m finally commenting because this post sounds EXACTLY like my thoughts during the last few days my son was in the NICU… I’m not kidding… exactly! I was so irritated with everybody we came in contact with. I was totally fed up and ready to snatch him up and just LEAVE. I was sick of being told how to do things and what was what. I kept thinking, “Hey, I’m the MOM here and I say it’s time he comes home!” I felt confident, but of course they were cautious so he had to stay until THEY were confident. With distance and a calmer, more rested mind, I can see that they were being reasonable, but at the time I was completely out of patience. [Mini-flashback rant] the little setbacks that kept popping up, like when we’d clearly jostled the bottle awkwardly causing him to choke a bit on the feed and then, of course, desat or brady, thus causing his discharge date to be rescheduled… again… well, these set-backs turned us into classic basket cases. It felt like we were trapped in a sick and twisted game that wouldn’t end. And I knew I was supposed to feel grateful but I was just so done with being “good”… I just wanted him home. And then the nurses kept saying “don’t get your hopes up until you are walking out the door” but how could we NOT?!?!?!? This is our child, and when we saw the light at the end of the tunnel, how could we not start running towards it as fast as we possibly could?!

    Anyhoo, after 2 “failed” (hate that term) car seat challenges and 2 rescheduled discharge dates, on the glorious day of April 8, we finally heard the words “come and get him, he’s being discharged today.” I tell ya’, that was probably the happiest moment of my life! It was like he was being born all over again but a lot bigger, stronger and healthier! He came home in a the goofy Easter basket-like car bed with an apnea monitor and we took the best nap of our lives… together!!!!

    I’m praying real hard that you guys hear those words soon too… and in time for Christmas!

    Huge hugs, Erin

    PS – My son, Gus, a 1 pound 7 ounce 26-weeker, was at Inova Fairfax from Dec 26, 2008 until April 8, 2009. He’s going to turn 2 in five days!

    PPS – Thank you for being so authentic with your feelings. It’s been theraputic to read your words in all their honesty!

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