I look back at those early pictures and it feels like a different lifetime.
I honestly believe there is some sort of NICU Amnesia that sets in. There are some days that I think to myself, "This hasn't been so bad... I wouldn't want to do it again, but it's easier than I thought." Then I look back to his first weeks of life, when he literally was at death's door, and it comes flooding back.
We very nearly lost him. We came way too close to not ever being able to see that sweet smile. Parker has been through the valley of the shadow, to be sure.
But he made it.
We made it.
Our homecoming is now spoken of as a certainty, and it will likely be sooner than later. This upcoming week is going to determine a lot about our departure date- he will probably be switched down to low-flow oxygen (which means more work for his lungs) and will be taking much more of his feeds by mouth (which means more work for everything). Depending on how he does with those two things, we could be out of there quite soon. In the middle of all that, he still has to be weaned on several medicines. The light at the end of the tunnel is getting closer.
I don't much like this tunnel, just to be clear.
In the months before Parker's birth, I had two possible outcomes in my head: 1) he will die, or 2) he will go home. It might seem like those are the ONLY two outcomes, but I should be straightforward and honest about number 2-- I thought, "he will go home... *in less than 8 weeks*."
I don't entirely know why I picked that particular number-- I think it had to do with our initial consult with Dr. Parker. He told us that the typical NICU stay for CDHers was sometimes as short as 6 weeks, but more often 8-12 weeks. Maybe it was that day, maybe it wasn't, but I settled in my head that if Parker survived, he certainly wouldn't be in the hospital more than 2 months.
I prepared my psycho mommy binder with 8 calendar pages. I lined up Jeremiah Care for 8 weeks. I made 8 weeks worth of freezer meals. My psycho mommy binder has no more pages. My Jeremiah Care rotation has ended, and it is now time to ask for help again. As the freezer has emptied, I've been using it as a countdown clock of sorts. (Somehow. those got off by 2 weeks-- largely due to the fact that each meal feeds us for several days with leftovers, so I have 2 weeks worth of food left. Yay!)
I pre-planned so much so that I could remove those particular stressors for the first two months. It worked FANTASTICALLY well. Now that the time is up, I'm not stressed about it-- there are plenty of people who are willing to help with Jeremiah, and there have been no problems whatsoever with him. Cooking dinner will be easy, now that I know how our daily routine works. I am comfortable with how our lives are chugging along, and I'm not worried about having to continue for a few more weeks.
I just don't want to.
I'm tired of our family being split all the time. I'm tired of STILL not feeling entirely like Parker's mom instead of a visitor. I'm annoyed that I allowed myself to formulate any sort of deadline. I'm annoyed that I am annoyed that we didn't meet my goal-that-wasn't-a-goal. I'm annoyed that I've already started thinking that we WILL be home by my birthday, doggone it.
I feel disappointed, but then I look back at the progress he has made in 8 weeks. I feel sad, but then I realize that he survived. I feel tired, but then I know how short a time 8 weeks really is. I feel whiny and grouchy, but then I realize that I've been able to witness a miracle. I have actually gotten to see God's hands at work, aligning people and circumstances so that His plan for Parker's life can start to take shape.
I've been reading over all the verses I had earmarked in preparation for this mess, and this one couldn't be better for my attitude this week. I especially like the way it is put in The Message:
"So keep a firm grip on the faith. The suffering won't last forever. It won't be long before this generous God who has great plans for us in Christ—eternal and glorious plans they are!—will have you put together and on your feet for good. He gets the last word; yes, He does."
~1 Peter 5:10
Oh my gosh, can I relate to this post! For me it was 6 weeks that I got into my head... So when Monday came and it didn't look like we were going home, I felt kicked in the gut. It's all about managing expectations, right? There is nothing we can control in this situation, but we cling to things...one doctor had mentioned 3 weeks as best case, so a tiny part of me was really pulling for that.... So happy for how great Parker is doing! The further you get too, it is even more amazing when yOU look back and see how God worked and how he intervened many, many times. I still get goosebumps when I read back through finleys journal and I see god. Love and prayers to continue to sustain you..you just need a refill. :) and maybe some more Krispy kremes....
ReplyDeleteLove, liz
Totally with you on the NICU amnesia. (ECMO, what ECMO?) So glad Parker's got one foot out the door, even if it might not be within the 8 week time frame :)
ReplyDeleteOne of my friends spent months at the beginning of her first baby's life living the NICU life. She wrote me: Right now her NICU life is 100% of Clara's life...but she will get home, and time will go by, and then that NICU stay will become a smaller and smaller percentage of her life. Maybe it's the math teacher in me, but this really helped me. And by the way, even someone with your incredibly positive outlook is allowed to feel weary. Continued prayers and love from North Carolina...
ReplyDeleteOh gosh, your post brought back so many memories. Dakota was due originally on Valentine's Day. She decided to come on Christmas Day instead (silly girl got her holidays confused). When she was first born and on ECMO I thought that we may be in for a very long haul. But then she started progressing well and started her feeding on January 31st. In my mind I was sure that we were going to be home by Valentine's Day. On Valentine's Day, we seemed as far away from home as ever. My Maternity leave was down to 4 more weeks, the Daytona 500 was on and I really wanted to watch it at home (I know, silly), and I was frustrated, tired and so sad that my baby wasn't home yet. I know how passing those dates can feel. On February 15th, I was feeding Dakota (or trying to as she was resisting) and the tears were streaming down my face (don't do this, it doesn't help the baby - I always tried to sing while I fed Dakota so she wouldn't sense my stress - but I just couldn't handle it that day). A neonatologist came up to me and said, "If you want to get out of here, things have to change." She taught me how to pump and dump the quencher milk, to make the milk more fatty. She set up a trial for us to pull the NG tube to see how Dakota did. She talked to me about breast feeding as an option since then "they don't know how much Dakota is eating. It drives the doctors crazy, but then we can only focus on the important thing - is she gaining weight." So we pulled the tube, did the trial, and she went how 10 days later, on February 25th (3 days before my birthday - the next artificial deadline I set =)). Anyways, I just wanted to say, that we all do it. I understand exactly what you're feeling and he will get there. May the light at the end of the tunnell get brighter and brighter!!!! Eat, baby, eat!!!!
ReplyDeleteHugs,
Jennifer
Mom to Dakota 12-25-2008
RCDH survivor
This, too, shall pass. Am sharing my daily text message for today ....Lord, because you love us, we can remain strong. You give us all we need when we need it most! He can and He will ... that's how GOD rolls!!!!!!!! Love to all of you.
ReplyDeleteOh, those deadlines. Those sneaky artificial didn't know I had them but I sure was working towards a deadline. Perhaps us type-a teacher types are even worse at this than most. You'll get a second wind, or a third one, or however many it takes. But as I'm sure you've been told, the leg of the journey you're on now may be less dramatic, less intense, less scary, but it's a whole lot more frustrating, more tedious, and more agonizing. I had more meltdowns over feeding than I did during her 22 days on ECMO. Give yourself some grace. Praying for him to CHOW DOWN and surprise us all with his OWN deadline. :)
ReplyDeleteOh I so remember getting to the point you are at except are ever looming, self imposed deadline was Christmas (then New Years-didn't make that either.) That was the date I put in my head. I had all these romantic ideas of our family all together on Christmas day with our little miracle baby at home in his own crib. Well, the holidays came and went with many frustrations keeping us in the hospital. I remember one of Jacob's surgeons saying, "Well, at least we are talking about these more trivial things than whether or not to put Jacob on ECMO!" He was right. When it came right down to it, we had our baby boy thriving in so many ways. We needed to remember to be thankful and praise God for His great gifts. It's a tiring journey nonetheless, and it can get very wearing. We were in the hospital exactly 10 weeks. In the beginning of our stay, I remember the nurses saying there will come a time when we won't want to be there anymore. Looking at all the tubes, wires, and hurdles we were up against, we couldn't imagine that day coming. Then it came and could think of nothing else!! We were on pins and needles waiting to go home and let us take care of Jacob as we knew by that point what he liked best and what worked best. You will get there too and soon you will be on your way home with your precious miracle.
ReplyDeleteHang in there! Soon they will start talking about "discharge instructions and papers" and if you are like me, your stomach will fill with butterflies of excitement (and a little bit of nervousness-"oh my goodness, we have to do this on our own!")
Praying for you all!
Katy