Today was not my favorite day. It started out grumpy (on more than one account) and ended with tears (on more than one account).
Scarlett pulled her NG tube out again. It hasn't happened in a while, and really, she doesn't pull it. It just gets caught on something and, this time with tape wet from the bath, slipped right out. It's not painful, really. It is, however, frustrating because a tube out means we have to put a tube in.
We were out of tubes. We had to call the hospital, who then called the home pharmacy, who told me that we had them on order all along, and I should have just had them delivered. This was news to me after having the home pharmacy for almost 8 months; I have been going to the hospital clinic for new tubes all this time, when we could have had supplies delivered to us at home! We knew they had the formula bags for her nightly tube feeding. If we are organized (and that's a big "if"...) we can just call when we have a few NG pump bags left, and they will ship a new case directly to the house. Easy, if only we would remember to call before it was too late. This week, because we forgot to call, I went to the home pharmacy office and picked them up so that we wouldn't have to wait the 2-3 days for delivery. Since I had to go there again today and to the clinic tomorrow, that makes 3 trips across the bay for us this week. Luckily, they gave us a few extra tubes so we won't have to do this again any time soon.
So tonight, we had to put the tube in. Scarlett has not been eating well AT ALL (like, 3 ounces total all day today, and no solids except gnawing on a soggy graham cracker), so we HAD to put the tube in. Plus, since she is getting oral chemo, I am really worried about it sitting in her mouth...rotting her tiny new teeth or causing sores...so I am much more comfortable putting it through the tube. When the time came for cleaning up, getting on PJs and putting in the tube, our usually-mellow baby went through the roof. No apparent reason, just screaming.
Unfortunately, we had to get it over with. Chris tried to calm her down while I prepped all the supplies: tube, filled with water, marked at the correct length; thick tape to protect her skin; thin tape (one cut into a heart) to hold the tube in place; syringe of air and stethoscope to check placement at the end (push in air, listen for gurgle in stomach, then pull back some stomach juices to double check...blech). Chris pushes the tube in through her nose (instructions from the nurse: "when she gags, keep pushing"). I hold her down. We've done it many times, but it is never easy. She screams, gags and thrashes her body to try to get away.
After the tube was in place, I scooped her up and just tried to calm her back down. It is heartbreaking every single time. She does not understand why we would do something so awful to her. Her eyes search for us, looking for someone to help her, but we're the ones holding her down. Please, please, please don't let her remember this.
I rocked and rocked with her, and all I could think about was how uncertain things still are. It has been so unfair to her, all these procedures, medications, discomforts. Is everything we put her though - up to this point and in the months to come - going to work? Will we win this battle? Some days I don't doubt it, but other days...well, other days are not my favorite.
Awww, what a rough day for you three! I'm pretty sure Scarlett knows somewhere inside of her that you guys wouldn't put her through that if it wasn't the best thing for her. Above all, she definitely knows you and Chris love her more than anything and are doing everything in your power to make sure she gets through all of this. Hope your tomorrow is a million times better than today!
Brandi, as soon as she can, your precious baby girl will thank you for nights like this and the countless other ways in which you've fought to SAVE HER LIFE! Be strong, and know that there are many strangers out here who support and love you!
I can't even imagine...A mother should never have to do that...Your precious baby is lucky to have you as parents though and you are doing it for her own good. She will realize that when she is old enough for you to tell her the stories about it.
Whether the fight is won or not, the important part is that you choose to fight! Some people wouldn't choose to fight, they would give up, say it's too much work, and not continue. You and your husband keep fighting, and you have a beautiful little life who just turned ONE - something the first doctors said would not happen - because you chose to fight! So regardless of what you may have to do that completely sucks, everything is for her. She won't remember these things, she's too young. Someday, when you explain the things you had to do to make sure she survived, she was look at you in awe, and be thankful she has such wonderful parents that fought for her.
Oh sweetie, I'm so sorry you guys have to go thru all of this. This battle will be won, all three of you are fighters- I have NO doubt about it! Hold your head up high Mama, you have so many supporters lifting Scarlett, yourself and Chris up. Loves and hugs from my family to yours!
There is no doubt in my mind that Scarlett will thank you for this some day. I can't even pretend to imagine how heartbreaking and awful it is for you. I'm so sorry your family has to go through this. I'm in awe at how strong you and Chris are. I don't know if I could be that strong, I hope that I could for my child but I don't know that I could. Just know that you're fighting for your daughters life, you're not doing it to be mean!!!! That is what you need to keep telling yourself. You WILL win this fight!! There are too many people praying and hoping for Scarlett, surely God will listen. Thinking of you and your family daily...love and hugs from my family to yours
:( I hate seeing anyone go through this.
No mama she shouldn't remember. She is too young. Jut comfort her as much as you can.
You are great people with an amazing heart for what you and your family go through.
this made me so teary, my heart just breaking for all the hard things you have to do every single day. and all the hard things still in front of you. all i can say is i'm so glad for all three of you that she's so little and she won't remember a thing, just how you hugged and hugged her. xoxo. praying for you a little extra today.
So sorry you have to deal with that. My husband was hospitalized with Crohns a few years ago and he swears that the worst part about the whole thing was the NG tube. It was one of the hardest things ever watching the nurses put that in him so I can only imagine how hard it must be on you guys to have to do that for Scarlett. Just another example of how amazing you guy sare and how lucky she is to have you. I think about you guys a lot because she is just a few months younger than my son and I can't imagine what you have been through.
She wont remember, but I can see why it is traumatic for you and Chris. I can't imagine. I'm sorry you have to go through that, you are so strong. Spend some extra time cuddling and playing with Scarlet today, just to push those negative memories out. Stay strong!
I'm sorry you had a rough days. I can only imagine how hard it is for you and Chris. You are amazing people fighting a battle that no parent should have to indure. My thoughts and prayers are with you and little Scarlett. Remember the good days and forget the hard ones.
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