For those of you who read my last post, where I wrote that 90 days doesn’t seem as long as three months. Where I wrote that I can handle it as long as I keep my mind on the light at the end of the tunnel, where I wrote that segmenting the time helps it pass faster. Forget all of that. I want out! Talk about segmenting my time, I am close to counting the minutes!
I think I have asked every doctor that ever worked on my boys when they think they will be able to come home. Can you blame me? We received Carter’s home oxygen equipment on December 20th and they made sure we were set for him at home three weeks ago! I have canceled two pediatrician appointments for him and told the home nurse three times on the phone that “no, she doesn’t need to come to check on him, he is still in NICU”. Can you blame me for getting antsy!
I have become quite skeptical when the Doctors send a young, sweet resident in to the room to tell me their idea of when the boys will be leaving. I suppress a cynical smile, knowing from experience it never turns out the way that they say. That truly, the boys will be home when the boys are ready to be home. I appreciate the sympathetic tone of the resident who has just begun their tour in the NICU but you can’t pull the wool over my eyes, I have been here for three months. So there is no placating me. I have seen too much and experienced a delayed discharge now for three weeks to hold them to their discharge dates. It is my fault really, for being so antsy, I should know better than to focus on the end. It is like when you are on a road trip and you need a rest stop. You can hold it in without problem, but when the road signs start counting down the nearest rest stop by the mile, you feel as though you will burst. You jump out of the car before it comes to a complete stop, as you walk/run into the building and dance in place as you wait in line – time stands still. And you doubt if you can wait any longer. But you do, you have had a lifetime of learning to hold it and wait and everything turns out fine. Well – I am dancing in line! Reason tells me I can hold it, but in the moment, I have doubts. I will simply have to be patient, and keep calm and content with what is. Easier said than done!
All of this being said, I do believe Carter will be home by the end of the week. He is starting to pick up on his eating and getting back to himself after his eye surgery last Thursday. Realistically I think he should be discharged some time this weekend. But I could be wrong. Carter is in charge here when it comes to him being ready. We will follow his lead. As for Griffin he is on the right track too. Yesterday morning they thought he could be home by Friday. I nearly choked – as a nurse and resident that I had never met before told me he was ready to go. Thirty minutes later he had a bad Brady spell when refluxing and both of them recounted their statements. That is the Griffin I know. On the up side though, he is starting the process to discharge and is officially on a “spell count”. While he will most likely come home on a monitor to check for spells he still needs to go 7 days without a bad spell. Yesterday the earliest he could come home was next Monday, today he had another bad spell – so we are looking at next Tuesday. Let the counting begin!
Don’t worry about me, I’m not looking for sympathy. I just needed to vent a bit. I know the boys will be home soon, I know this is temporary, I know that we have come so far and we are thankful for that, I know that the boys will come home when they are ready, I know this is the home stretch, I know that in a month from now we will look back and forget what it was like to count the minutes, I know we will be fine – but I still want out…yesterday!
Dancing in the Rain 
Yesterday when I wrote that I can’t stop thinking about you, I wanted to continue by saying/explaining (but I’m trying to keep my texts shorter than usual…) that I am feeling so so antsy about the boys coming home and that I cannot even begin to imagine how anxious you must feel. Enough with the “tests” – that’s what I keep thinking. I’m so glad you wrote this – and have to say that even when you’re venting, your writing and analogies are so eloquent! Much love and lots of prayers, Aunt Cathy
We all want the boys to come home, (especially Chris due to him not wanting facial hair anymore) and we can not even imagine how antsy you and Tim must be. Just know that even though the Dr.’s keep giving you discharge dates that hasn’t happened, it is still the light flashing at the end of the tunnel. Griffin and Carter have such a long way and it truly amazes me to even think that the light is even visible! I often think back to October 8th and seeing them so small, fragile, and with wires coming out of everywhere and of course absolutely adorable! When I look at them now, all I can say is, WOW! What a long way they have come in such a short time (to the rest of us)! They both are strong little men who I will forever love and admire. With all that being said- I am going to put a couple more “notes” in my “God Box”. Love you much, Carla
Dear Allison, As I said before, I relate to what you are going through remembering when Patrick was in Children’s Hospital when he was a year old. He fell victim to a bad influenza and went down to 16 lbs. For the first few weeks I was grateful for the hospital, doctors and what they were doing. But after a while of being there 24/7, knowing the routines, familiar with doctors whom I knew had been on duty 36 hrs straight; which nurses knew what they were doing and which ones were bitches and hated their jobs. I knew when I was being placated and that no one really knew anything about tomorrow. That before Patrick could come home, we had to have 3-5 days of steady progress that I could monitor as well as they could. By week four I had had “it” big time and “it” started showing.
What you and your family are going thru is much different, times 2. The only real comparison is two mothers longing to have their children in their nest where they can nurture and care for them and refusing to lose them. All the motherly instincts God has given you have had to be put on a shelf and you have had to give your babies straight from your body over to strangers, machines that make unnatural noises, lights, beepers, cold plastic objects, tubes, too many needles, eyes that look at you over masks, and people who talk to you quickly as they move on to the next mother who is also anxiously waiting for them. None of this is natural, warm, soft, with nice smells and soothing sounds. Of course you’re sick of it! You want your sons home, damn it. You want a normal life!! And you’ve figured out the hospital system, the inadequacies of men and woman smart enough to ace medical school but unable to emotionally talk to a suffering parent for the 50th time. And then there are those nurses who seem to hate what they are doing!!! Why did they become nurses? Somewhere along the line didn’t they realize this wasn’t their calling?? (How I hope the NICU department weeds those out early.)
“Speak words of comfort to me.” You’ve really been through hell Allison. People like me watch you with amazement and wonder how you and your family hold it together. But you are doing it!!! Your sons have survived against all odds with you beside them loving them. Your motherly instincts have been right on the money. You’ve developed and demonstrated a strength, fortitude, and knowledge that will serve you and your family for decades. It takes great courage to be in your shoes and that audacity is a gift from God from which has made you better.
Hold your head high Allison. You are a formidable foe to anything that threatens all your children. Being tired of the NICU means you are ready to do all the things necessary to be the mother to premature babies who need specific care until they catch up. You have the patience and decisiveness to handle temporary set-backs in stride; identify things that require immediate attention and those where time will work things out. Your months in the NICU have given you a crash course in pediatrics, (you could hold your own at a cocktail party filled with doctors.) You are antsy because you are confident you can take care of your sons on your own! Congratulations!!
Wow! I agree with all of this 110%!! ❤
You can vent all you want! I can only iamagine what you and Tim are going through, but from reading your blog I think you are a very strong person. I am sure it is not easy, but when those boys are really ready, they will be home. And when that day comes, I look forward to reading it here! Sending prayers that it will be soon! Dawn
Can only begin to imagine how antsy you are. Praying for you guys everyday!
Love what Sandie wrote! Thinking of all of you and keeping you ever so close in thought and prayer.
Venting is good! Know that throughout these 90+ days, the prayers offered have not and are not exclusively for Carter and Griffin – they are also for Mom and Dad and Kennedy and Addison. I cannot envision the roller coaster emotions you have/are going through. It WILL get better. Our Christian love to you all.