My apologies for the radio silence – we have had a rough go of it. It took me coming out of this fog that I was in to realize how rough the last two weeks have been. I shared previously that Casey’s bike was stolen a month ago. Luckily, we have renters insurance and a lot of receipts are digital nowadays so we were able to get some money back to replace his bike with a pretty quick turnaround. For those of you that know Casey, this experience has been pulling at every one of his triggers. Having a bike eased a little of the monotony and helped make him feel less trapped. Shortly after, Casey’s brand new bike was damaged and his wallet and glasses were stolen. This added even more to the daily stressors of the NICU life and the beginning of the medical bills rolling in.
Although Olivia is now officially weaned off of pain medication, which is a huge relief, other things in the hospital aren’t progressing as quickly as before. She is still breathing on her own and she hasn’t shown any signs of infection. She is even able to go “off monitor” and go on walks around the unit. In the big picture she is doing great. She’s even wearing clothes now! But. And there is always a “but.” But, in order to be discharged without a feeding tube Olivia needs to take all of her feeds by breast or bottle. She is making slow progress, which is putting a lot of pressure on me to breastfeed and pump and a lot of pressure on Olivia to perform and prove that she can take milk from me and from a bottle. We have literally tried almost 10 different bottles in the last few days. The shape of her mouth and a high palette, which is a result of her skin condition, has made eating by the bottle difficult. Each feed is being monitored, measured, weighed. The success of taking a bottle is key to discharge because she will not be able to reach her caloric needs by breast milk alone. Her jaw is still very tight so she has to work hard to be efficient, which burns calories. And, on top of it all, she is getting A LOT of volume to keep up with her caloric needs so she is often gassy and uncomfortable. Needless to say, this has felt like an infinite loop of going nowhere. We continue to adjust and plan and trial and adjust again. It’s absolutely exhausting. It’s especially exhausting when you’re sweet 2-year-old champ isn’t sleeping well and is fighting bedtime with every ounce of his being.
It was a rough, rough few weeks.
Here we are on the other side of this fog and I can barely believe I held it together. That may be the iced coffee I had around 5 PM talking, but things are looking a little clearer now. Casey has his repaired bike back. I have settled into the patience of taking Olivia’s feeds day-by-day and suggesting small changes as we go. Oscar is getting much better sleep. Each day, I (admittedly often begrudgingly) remind myself that tomorrow we can start again. Truly, this has been the most sacrificial Lent I have ever, ever experienced.
On my walk back from the hospital tonight I was reflecting on why things feel so hard right now and thinking about what helped me get through the last two weeks without a major meltdown. In this hospital stay, the times that things have felt the hardest for me are the times that we are so close to achieving a big milestone: when Olivia was on the cusp of being extubated, when we were waiting for the last plaque to come off, when the humidity in her isolette was being weaned, when she was being moved into an open air crib, and now to get the darn feeding tube out. We can see the milestones coming long before they are accomplished. Each time I wanted more than anything for the waiting to end. I desperately wanted to be at the finish line so we could start working towards the next goal. The conservative moves only exacerbated my impatience. Each accomplishment means that we are that much closer to going home. I just want to hurry it all up here so we can go home and slow it all down to bask in some of that postpartum-maternity-leave bliss that I may never get. That’s why these few weeks have been hard. The last achievement before discharge is the one that is taking the absolute longest and requires my proactive involvement.
I just want to go home. And yet I find myself feeling sad about the day that we leave. Some may call it Stockholm syndrome, but really it is just that I have found some really special people. What I am going to say next should be no surprise to a) anyone that has spent a significant amount of time in the hospital and/or b) anyone that knows my mom: What has helped me avoid a total and complete meltdown are the nurses. P.S. my mom is a nurse so I may have a tiny bias because my mom is the best. The kindness and compassion from the staff at the hospital and the staff at the family housing, especially the nurses, is the antidote. Being able to slump into Olivia’s room or drag my feet through the door at the family housing and be greeted by people that simply understand the struggle that every day brings is refreshing. It is freeing to be able to converse honestly about our situation with no judgment and no offering of solutions or pity. Just open ears. I am still learning how to be of support to families in circumstances like mine, but I have to say I have some astounding role models. Reading through this article Being Supportive: What to Say and Not to Say to Families of Ill Children helped a lot, too.
Olivia’s most recent feeding trends are increasingly positive and we really are close to going home. The progress that has been made in the last two (!!!) months is staggering. Olivia could not have done it without the love and support from the community of people that are so anxiously waiting to meet her. Thank you for the continued love and support as we patiently prepare for our return home as a family of four.
P.S. The featured picture on this post is of Olivia’s first walk around the NICU with some of her primary nurses. The one in the maroon would be especially proud of my accidental punny title.
Special Prayer Intentions: Olivia’s feeding, my patience, all families of babies in the NICU, and the continued wisdom of the nurses! Our Lady of Mercy, pray for us!