Aidan and I visited his old stomping grounds last week–the NICU where he spent the first 15 weeks of his life. It was a spur of the moment trip. Earlier in the day we went to the park to meet Catherine (one of his respiratory therapists turned friend/”grandma”/babysitter) and her dog Bella at the park. We had a wonderful time. Aidan LOVES dogs. He laughs hysterically when Bella licks his face. He even tries to get up on her back and ride her like a horse.
After the park we went to dinner with Catherine. We were taking her back to her house when she suddenly said, “I almost forgot. I think Janet is working tonight.” Janet was one of Aidan’s night primary nurses. Aidan was a very popular boy in the NICU. He had 2 day primary nurses and 2 night primary nurses. Sometimes they would have to “fight” each other for Aidan duty. We had not seen Janet in person in almost a year and a half. So Catherine called the NICU to make sure she was working.
We got there at about 6:30 and got to see the day shift right before they left and the night shift as they were coming on. It was absolutely wonderful. One of his day primaries, Kathi, was working along with about 5 other day shift nurses who had cared for him. On the night shift coming in we saw about 5 or 6 night nurses. Janet almost choked on her dinner when Aidan came running up to her.
The nurses seemed to be stuck in place. Their expressions can be described as nothing short of sheer joy and amazement. Of course we send pictures almost on a monthly basis via email to the NICU, but all of the nurses told me it is NOTHING like actually seeing the child.
The antepartum coordinator was there also. She asked if I wouldn’t mind visiting a few mothers in the hospital on bedrest and talking with them about Aidan. I am always willing to be of help. That hospital saved my life and saved my son’s life.
I met 4 different pregnant women. #1 was 31 weeks with twins and some evidence of the placenta starting to separate from the uterine wall. #2 was 26 weeks with preterm labor. #3 was 31 weeks with twins with Twin to Twin Transfusion Syndrome. #4 was 29 weeks with mild preeclampsia. All of the babies are measuring significantly bigger than Aidan when he was born. The mother who seemed most affected by our visit was mother #1. Her twins are a shade over 3 pounds each. She became very emotional when I recounted Aidan’s birth stats and she realized her twins were double Aidan’s birthweight. She and her husband seemed very frightened but bolstered by our visit. They were in awe of Aidan and thanked me profusely for my visit. I answered a lot of questions for them and I feel as if I gave them hope.
We visited some more with his nurses who also seemed bolstered by seeing this 2 1/2 year old running around. They could scarcely reconcile the moment with the 1.5 lb preemie they so tenderly cared for. They thanked me and told me that it is these moments that make their jobs worthwhile…that give them hope.
I reflected on the visit later that evening and felt a mix of emotions. There seems to be a big gaping hole in most NICUs and antepartum units in terms of taking care of emotional needs of the family. What would it have meant to me when I was on bedrest to have met a family who had a “good” outcome? Does that sort of meeting give hope or false hope? What had I given these antepartum parents or even the nurses for that matter? Hope or false hope?
A picture frame hangs on the central hallway wall in this NICU. There are now 2 others next to it. The picture was the first graduate picture hung on the hallway of his NICU. On Aidan’s first birthday we framed two pictures…one of Aidan on the day of his birth with Brandon’s hand behind him. Another was a montage of first birthday pictures with the inscription “Forever Grateful for Aidan Christopher”. I have had other parents remark to me that this picture gave them hope as they walked by it every day.
I worry sometimes that our story gives false hope. I know that the odds of a 1.5lb baby turning into a walking, talking, running, jumping, laughing toddler are not amazing odds. There are children who have difficulties and even disabilities. Life with Aidan has not been completely smooth sailing. We had some feeding issues and lungs to watch out for. But life felt sublime after that evening visit. We had come so far. Were we really in that place only 2.5 years ago? But when I visited those women, I remembered that fear. The ultimate fears. What if my baby doesn’t make it? What if my baby is permanently impacted?
Would I have wanted mostly blunt honesty about outcomes? Would I have wanted to see a child like Aidan?
I think I’d want both. I would want to know what *could be*…in both manners of speaking. Possible difficult outcomes…but also the ability to hope. The hope of what could be. The hope of a joyous toddler. The hope of Aidan.
I really pray I didn’t give false hope. As I thought about it more the next day, I came to the conclusion that there is nothing false about the hope I gave. Aidan is real. His outcome is real. Parents in this scary situation desperately need something to grab onto. I talked about the difficulties we faced, but I also talked about how most of my days now are filled with chasing after a very curious and active toddler.
The experience of that evening makes me want to do more for families faced with antepartum and NICU stays and impacts of prematurity. I’m just not sure what that looks like yet.
This gives me the same feelings. I am volunteering with our NICU with a partent to parent support and I was just assigned my first mom a week ago her son was a pound and a half bigger then Lexie at the same gest and did very well in NICU but I felt like giving the positive was good but at the same time I also wanted to say “hay it is not all easy”(and Lexie was a 34wkr) the mom really wanted to know that things have turned out good for us which yes they have but we still have speech issues and she is still so much more immuture then other kids her age not to mention any possable LDs yet to be found if they are there. So yes I did tell her that she has done well but made sure to mention severl times that she does have/had delays. I know that when I start the next part of the program(a visiting unassigned walk through of the NICU to visit & support)I will feel the same. It is very hard to give hope/false hope when you want to scream that no it is not as easy as our wonderful kids make it look. It is a very hard balance to walk and hopefully I will be able to find that right in-between. It is also hard to read the parents and see what they want some want to just hear the good and some want to know it all.
Forgot to add those pics are adorable Aidan is getting so big
Great post! I think you are right, some reality is important but hope is absolutely necessary to keep you going every day. I try to do this with my blog, I could easily paint a rosy “everything’s okay” picture but I think it’s important to tell the good and the bad. I think it would be awesome to offer ante-partum and NICU support to family’s who are feeling so lost.
You expressed it well – it feels like such a balancing act when answering questions, between wanting to let people know there is hope but not setting false expectations. We feel like we’re trying to walk that fine line whenever people ask about Bennett. I remember one of his nurses saying they were careful to NOT use him as an example specifically because they were worried it would give false hope to new preemie parents.
But when facing delivery so early, I sure needed something to cling to and I found only two stories of kids (on-line) that survived at 23 weeks gestation back then. Those stories made such an impact on me… I just needed to know there was a chance for Bennett. But we certainly did not anticipate this outcome.
Great post. We’re in kind of the same position because, for a 23 weeker, Hallie looks pretty good, in spite of her issues (which are not immediately visible and hopefully will improve at some point). So we feel awkward when we stop in and see our friends at the NICU (which is about a ten minute walk from here) and they introduce us to a parent of a micropreemie currently on a vent or what have you. Still, it does give parents hope and hope is necessary and we remember quite well how much it meant to us to see Hallie’s “primary primary”, Ellen’s former primary kiddo who had been a very very sick 24 weeker. He came into the NICU with his mom on his first birthday, and there he was, this gorgeous, playful and very chubby little boy. Day and night in terms of comparison to how sick he’d been. Hallie was maybe 2 months old at that point, still stuck on the vent, getting bigger but lacking in body fat, hooked up to IVs and wires and tubes and such and just to be able to imagine that there could be a day when our child was swinging in our arms kept us going. Now, at that point we had no choices and no illusions: we knew that we had opted to push on and that, as long as Hallie could begin to breathe on her own, there was a very very good chance that she was coming home, and we also knew that the rate of disability for 23 weekers was somewhere around 70%.So we knew that it could come out looking much worse than things did for this particular little one year old, but there was no going back and we did not want to go back. And we had done enough searching on the internet to find out what happens later on to micropreemies and we understood that there was a range of possibilities (though perhaps skewed more in the direction of good outcomes than bad—that would be an interesting and impossible study to do). Since I am a “Telly monster” like creature by nature, it was more possible for me to envision a doom and gloom scenario, so seeing a kid doing well gave me a corrective to my own natural curmudgeoniness.