That's right, schizophrenia.
When I think about how my mind is starting to work, I realize that I have an extreme amount of fluctuation in emotions every day as I sit in the NICU from 8 a.m. - 7 p.m. with my pride and joy, Jackson. One minute I feel like I could cry at the drop of a hat. The next I can look at my baby's sweet face or funny little dance in his crib and all is right in the world. Technically, that probably is not schizophrenia, but I am not convinced this is still postpartum-induced either. Therefore, it must be NICUitis.
So many people have commended me and Colin on our strength and positivity. I appreciate that so much. We have worked so hard to stay optimistic and look at the bright side. Really, do we have any other choice? We can't sit around and be miserable despite the unfortunate circumstances we are faced with. Also, I have mentioned it several times, things could be A LOT worse. We spend the majority of our waking hours in a place that serves as a constant reminder of this fact.
All that being said, we are human. We have weak moments where we start to feel sorry for ourselves.
Exhibit A: The entrance to the NICU is unfortunately located right outside of the Family Birthing Center. Most days we get to watch brand new parents leave with their healthy term baby strapped in their car seat. "Must be nice." is our typical reaction. Such a bitter thing to say. We often follow up with a good-natured laugh, most likely to convince ourselves we are kidding and truly happy for them.
Exhibit B: Every time we get in my car we are faced with an empty car seat. Every time we go home we see an empty crib. Every time we receive a generous baby gift we wonder when we get to use it. Enough said.
Today I requested a therapy session with our nurse and neonatologist. We had an honest conversation about the reality of how much longer I will be experiencing NICUitis. Yes, Jackson is doing very well and acting exactly as he should be at his gestation. However, he has lung disease caused by his premature birth and need for CPAP support for a while after his birth. The doctor explained that the CPAP can cause tearing in the lungs and that can take a while to repair itself. Also, the fact we live up in elevation can slow that process down. Every baby is different and does things in their own time. He needs as much time as it will take to grow out of his lung disease. I have also been doing some research on HELLP syndrome and I am starting to believe that I was sick longer than I thought and it may have affected Jackson. My doctor advised us to really start limiting visitors to help protect him from outside infection, which would cause serious issues and a major delayed departure. As much as everyone wants to meet or visit Jackson and as much as we love to show him off, we need to shelter him as much as we can right now.
The other piece of the puzzle is feeding. Jackson is a great eater but he is very inconsistent. He is so eager to eat but then he gets fatigued. The feeding specialist compared it to being asked to run around the block and then chug a glass of water over and over. Now try and do that with lung disease. It would certainly be a challenge. Jackson is expected to be able to do this 8 times per day. This explains why he is given a break and is fed passively through a tube when he has eaten all he can on his own (through bottle or breast) or when he won't wake up to eat. Despite how challenging feeding is, he tries every time I put him to breast four times per day and he consistently grows pretty much every day. He is a hard worker and a fighter. I admire my strong little man so much. Preemies are amazing little people.
Finally, the doctor spoke to me about how to get myself to the finish line. It is so hard because Jackson is in control and there is not much more I can do to get us home any faster. He commended me for being here spending my days with Jackson, working hard to pump milk diligently, and continuing to be patient and working on breast feeding. I was reminded that I am supposed to be selfish right now so I can be as rested as possible, mentally and emotionally strong enough to take care of Jackson, and focused on protecting and nurturing our child. These are all things I try to achieve, but I spend a lot of time worrying about things that should not be important to me right now. It's time to get selfish and get my baby home. I was not intentionally fishing for compliments and reassurance, but it was nice to hear that the doctors and nurses think we are doing a great job as parents of a NICU baby.
What I really needed was a strong dose of reality. Every doctor and nurse has an opinion. I have realized you have to be careful about what you really take to heart. I have been told on more than one occasion that we are looking at 7-10 days before we go home. Well, it is very unlikely that is going to happen even from today and it is time to accept that and deal with it. What we were told from the beginning is plan on taking your home on his due date and feel lucky if you go home before then. Others have said 36-37 weeks is the time a lot of babies figure everything out and start to progress quickly. Every baby is different, and Jackson may be a baby that appears very healthy, strong, and advanced. However, he may need more time in the NICU than other babies to get to go home. He needs enough endurance to feed by mouth and thrive and until that time he needs to be tube fed in the NICU. Of course, he still may all the sudden hit a growth spurt and develop enough lung tissue to rapidly progress, but I am going to prepare to be here 2-3 more weeks and feel fortunate if we get home before then. I think I can, I think I can, I think I can.....
I will just be patient and protective and we will go home when he is ready. Until then, this is my view...
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ReplyDeleteYou can do it! You have such a great attitude, and you never let those dark moments keep you down. They are natural, and you move past them. You're doing so well!
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