My Response Changed Everything(This is a copy of the message I sent back to her after she sent me a message asking of Moose's condition. While working through my response I had a moment of insight that will hopefully stay with me forever. )
At this point I have no idea how long Moose will be at the hospital. They can't send him home until someone discovers what's behind the episodes, but so far the doctors haven't done anything but make guesses. They keep sending in specialists to observe him and run tests and studies, but the tests are only showing that he's having episodes. They are pretty sure that it's not his heart, lungs, tummy, or swallowing reflex. The speech specialist told me today that she's recommending to his pediatric team that an ENT come look at him tomorrow.
The problem with him being in a teaching hospital is that there are SO MANY people working with him. Each one has a different theory and a different way they want things done. For example, the pediatric team wants him on oxygen while he's being tube fed every meal. The speech therapists want him hooked up to recording monitors with no oxygen while he's bottle fed. So each time he sees a specialist they do things their way but as soon as they leave the nurses return back to the pediatric team's orders.
While the speech therapist was in to see him today she had me feed him a bottle of high calorie formula mixed with rice (to make it thicker). I did everything exactly how she instructed while she stood behind me and watched, and he had several de-sats and turned a pale gray color once. So I'm perfectly happy with him being tube fed because I am d.o.n.e. with seeing him turn that color. DONE.
Unfortunately the family, who has taken turn taking days off to stay with the big boys, now have no time left. Starting tonight David and I are going to have to take turns sleeping at home with the big boys, then I'm going to have to be home with the big boys during the day while everyone is at work, and in the afternoons and evenings my mother-in-law will watch the big boys when she's done with school so that I can go to be with Moose.
My mom thinks I should put Critter and Smudge into daycare until Moose is home, but David doesn't want to. He has a point. Day care is expensive, and I can be home with them during the day since Moose has nurses, but it bothers me to think of Moose all alone in his room. What if he's fussy but the nurses don't hear him? Or his diapee is wet and no one notices?
This was a lot easier when he was in the NICU. First, we couldn't stay bedside since they didn't allow it, so I didn't feel guilty for not being there 24/7. All the babies were in one room in open cribs so as soon as they made a noise their nurse could hear them.
Second, when he was in the NICU, it was more of a "he's coming home soon" mentality because every day he was, for the most part, better than the day before. It felt like each day was bringing us closer to going home. And I just assumed that once he was home he would be fine.
Now I have a sick baby who I could be with, but can't because of childcare. The mentality now is "I have a sick baby who needs me but I can't always be there and who knows when he's coming home?" It's like we're stuck in a holding pattern with no clue as to an end date. Plus, I no longer feel secure in the hospital's decision that he's "ok" So even when they do finally send him home, that first sense of security is completely gone.
It's a lot more stressful this time around. In the NICU I felt safe that if he had any problems there were trained professionals right there and they would make him all better. After the episode, when that EMT told me all those huge men were terrified they were going to loose Moose, I realize that even with the best training and equipment, sometimes there just isn't anything anyone can do.
I keep praying and praying for Moose to grow up to be healthy, happy, and a Christian. Almost non stop. I say the same prayer when I wake up, brush my teeth, take a shower, eat, sit and stare at him... you get the point. And every once in a while I'll add for God to give me a sense of peace. And yet I'm always wound up, sad for Moose, sad for the big babies, and spend nearly every waking minute either in tears or close to it. Driving home I passed a homeless man on the street corner and just bawled about how his life must be and wondering how his life came to be that way and wondering where his Mama is and what happened to her... I'm a puddle of mess.
And yesterday I made the mistake of reading adoption blogs while I sat with Moose. All those stories from the birthmoms had me bawling bedside all day. I know his nurses must think I need to be transferred to the mental health wing.
Tonight is my first night home alone with the big boys in, I don't know, months? David is sleeping at the hospital with Moose since I've got to be here tomorrow while everyone else is at work. I haven't spent the night alone as the only adult in the house since February. And now not only am I the only adult, one of my little penguins isn't here with me. I feel lonely and sad and worried.
Boy, am I a bucket of cheer or what? But now once I've started, there is just so much pouring out of me. You're going to need a day and a half and a babysitter for the kids just to read through this PM.
Counting up the days Moose has been alive (40) and how many he's spent in the hospital (30) absolutely floored me. He's spent 75% of his life in a crib hooked up to monitors being poked and prodded. And with each day the percentage gets higher. Not to mention, I've spent 30 of 40 days separated from my baby. He's grown from a preemie size to a newborn size and I haven't been able to dress him in any of the cutey little tiny preemie outfits we were given. Which is silly, I know. He's growing, right? I should be nothing but thankful. And I am, believe me, I am. But I still feel like I'm missing out. I'm missing his day to day life. I'm not the one to decide when to feed him. I'm not allowed to dress him in the sweet little outfits I have for him. I'm not allowed to take him out and show him off (not that I'd have been doing a ton of that with a preemie ;) )I can't even walk him up and down the hospital hallways or snuggle him on the sofa because of the monitor leads.
I'm torn between feeling blessed and feeling... not slighted. Not unlucky. Not ungrateful. Well, maybe a little ungrateful. He's safe where he is. There are people all over the country (and world- Thanks Tori and Cristina! :) ) I'm grateful for all that. I just wish he were healthy. And, for the most part, he is. He's growing and gaining weight. His apnea episodes are worrying, but since the first, they haven't been too bad.
And, since I'm this far in to pouring out my heart, I may as well add that I'm feeling guilty as Hell, too. I taught Critter to say "Out Moose!" for crying out loud. I would say over and over how done I was with being preggo. I felt, in my heart, that I didn't care if he came early. I just didn't realize the problems associated with him being half baked. God gave me what I wanted. Turns out I shouldn't have asked for it.
Just like when I was preggo with Oscar. I kept thinking, "ugh, I'm so not ready to be pregnant. I wish I could just put Oscar in a jar and have him later, when I'm ready." Yup. I really thought that. And then I lost Oscar and realized what a curse getting what you want can be. You think I'd have learned my lesson, huh?
On the other hand, if I hadn't had Moose the minute, and I do mean minute, as his APGAR was barely a 1, I'd have lost him. It's good he came early. It's a miracle that that day fell into place the way it did. If any of the things that happened that day had not happened, or had been off by even a few minutes, Moose wouldn't have survived. And if I'd had Oscar, I wouldn't have Critter, and by extension Smudge or Moose. So maybe in the case of Oscar, getting what my heart desired wasn't a bad thing.
Ohhhh, so, maybe this thing with Moose won't be such a bad thing??? Or, something will happen to Moose and I'll go off the deep end. Is it just me, or does the anticipation for what will happen a real stress inducer?
I just have to keep reminding myself of the Bible verse "Who by worry can add a single hour to their life?"
Whoa. When I just checked to get the exact verse number for that I came across this verse:
Matthew 6:24 - Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.
Ok. Well. Maybe I wasn't replying to your PM just to let you know about Moose. Maybe I was meant to reply to your PM so that I could say what I've been to scared to say and to find that verse to help me when I'm feeling anxious.
I told you I'd been praying for peace :D
On that note, if you've read this far you've probably been reading for a while and Ainsley may have a dirty diapee and Caleb may be wanting a snack and Emily may be finally wanting to tell you about her day at school, so I'll sign off.
Thanks Becca!! Your reply to me not only cleared up my blog question, it also helped me not to go crazy :) I love Base Camp.
