Avery's journey - part 3
A Cook Children’s employee documents her time in the NICU
No parent ever wants to have a NICU experience but I can tell you that if we had to have one, we are in the best possible place. And I’m not saying that because I work here. Now that Avery has been here for 8 weeks, I have learned about so many people we know who have also spent varying lengths of time in a NICU, either here or somewhere else. And it has been interesting and helpful to compare experiences.
Being a NICU parent has given us membership into this club where the initiation process can be pretty rough. The most encouraging news that we hear from other “members” whose children have “graduated” from the NICU is that their children have done well after coming home and are able to live normal lives for the most part.
The best part about being at Cook Children’s in the NICU is the freedom we’re given to see Avery whenever we want. She has her own room and we can visit her anytime. We can even spend the night in her room. If I wake up in the middle of the night at home and am worried about her, I can call her nurse to find out how she is doing.
Her team of doctors and nurses are also doing an incredible job of making this experience easier to handle. They make us feel like we are a part of her daily and long-term care. We’re included in conversations about her treatment plan, they make sure we understand everything we’ve talked about and even when briefing new doctors and nurses about Avery, they will ask if we have anything to add. I have definitely learned a completely new language, mostly made up of acronyms: CRP, TPN, PDA, CPAP, CBC, the list goes on. Our doctor even jokes that he’s going to give me an honorary medical degree when this is all over.
One of the things I’ve been most impressed with is that although we are in a medical setting, our nurses are helping us experience many of the things we might be doing if we were at home with a new baby. For instance, when Avery had to get a PICC line, they saved the hair they cut so we could document her first haircut. On her one month birthday, her nurse and the child life specialist helped Avery make a craft for us with her footprints. They make sure she has cute blankets right now for her isolette and are helping me pick her outfits that we can dress her in when she can start wearing clothes. An important thing in a girl’s life!
We just celebrated our first Mother’s Day and to document the occasion, they had a photographer come in to take pictures with all the moms and babies. While I never imagined spending my first Mother’s Day in the NICU, celebrating it with a photo shoot with my adorable daughter was pretty awesome and I am so grateful.
So, I must say, that although we would have never requested membership into this club, we are coming to terms with our new identity, experiences and all they entail. Shawn has even decided that he would like to mentor new parents here as they navigate their entry into the club. It would be a small way to give back to the place who is taking such great care of our daughter.
Quick update on Avery:
She is now on a lesser form of a ventilator, the conventional one, than she was before. Her lungs are looking better and we hope to have her off in a few weeks. Then we have several more steps to go until she’s breathing on her own. And even then, there’s a good chance that we’ll go home with her on oxygen. We also get to tackle bottle/breastfeeding. This can also be tricky as the combination of sucking, swallowing and breathing at the same time can be hard for little preemies. Her PDA has gotten smaller so there’s a chance surgery won’t be necessary. She continues to gain good weight and is 4 pounds, 8 ounce. We have come a long way and still have a long way to go. The marathon continues.
*Photos courtesy of Whitney Bennett Photography.