April came and after 9 months of fighting for her every ounce of weight gain we hit a wall. There was no more going around it. I wasn’t enough. her body needed more. I hated that struggle. the scale would literally raise my heart rate, cause me intense anxiety and I would panic. and I was placing her on one almost weekly in front of the watchful eyes of the doctors. I would see the scale go up and down, the numbers trying to calibrate accurately with a flailing baby on it…always moving. I would see a high number I’d pray for it to remain…then it would drop just as swiftly. I can close my eyes right now and see those red numbers move…and my heart still races. knowing what I know from the years of experience I have with this disease those numbers mean more than did she gain weight or not…those numbers directly correlate to long-term lung health and development of large, strong lungs…ones necessary to fight the beast. in April I raised the white flag. enough was enough. stepping in was no longer a thought. it was reality.
she was admitted into the hospital I spent so many years of my life in with him…fighting.
it was intensely difficult.
Getting the NG tube in was uneventful and I did it myself…surprised by how even so many years later how I never forgot how to. she needed it. I’m glad we made that decision. that was April 11th…my birthday.
the constant weight check appointments continued and each time my body would go into overdrive, my thoughts would race and I would internally panic until the truth of the number was revealed. had I done enough…the answer was almost always no.
hi calorie formulas, mixing at higher rates then we had to do for Conner…struggling to find a safe formula that didn’t cause her body to break out in rashes. trying 4 different infant formulas mixing at different ratio’s, timing digestive enzymes meticulously, watching every bottle go down, thankful for each one she would take because it meant less she needed by her NG at night. The dietician always suggesting this would be a long term issue since she started out with such severe GI issues that required surgery at 5 days old. I tucked it away in my heart. I would ask for a new formula, a new higher calorie mixing rate, I wasn’t willing to settle. As Brynlee got to 1 and became more active it became increasingly difficult to get a busy, excited toddler to stop to eat, we did the best we could, we changed her to pediasure, then to pediasure peptide so her body could absorb it since it was broken down for her. she drank it, her weight improved, but the sheer volume she needed in a day was impossible. 40 ounces a day of it infact…5 cans. So each night our nightlight was the screen on her kangaroo pump that pumped that formula into her body as she laid comfortably in dreamland. she didn’t know any different. she’s been a warrior suited for battle since hour one of her life. the sounds the feeding pump make constantly bringing me back to Conner…and his battle. and how it wasn’t enough…but always pushing that aside. always focusing on Brynlee…telling myself her story is different…unique.
I’d take her to CF clinic every other week and each trip the scale was my enemy and the team had intense talks of a G-tube so her face could be free from the tube taped on it. I just didn’t want it, I’m not against G-tubes, they are so helpful for so many reasons…I just feel after my fight with Conner my biggest regret looking back was not trying more options. Just going with the flow of statistics and numbers. Not leading with my heart. Letting my mind stop long enough to listen to what my HEART was screaming.
My heart said NO. my heart said FIGHT. my heart said DON’T QUIT. My heart screamed ENDURANCE. My heart reminded me the race in the battle against cf is NOT a sprint based upon numbers…it’s a MARATHON of decisions based upon individual knowledge, circumstances and needs. My heart screamed to be PATIENT…
G tube talks remain a constant focus at clinic. Her BMI’s not increasing like they should be…”Sarah you know the importance of nutrition in the outcome….” there voices trailing off realizing where all of our minds are going…there it was. BAM! a ton of bricks thrown into my fragile heart. My mind said “Sarah do the g-tube or your daughter will not live longer than Conner…” let me clarify it’s not that I truly believed that…but the enemy has a plan to KILL STEAL & DESTROY…so his lies are smart, deceptive, and deceptively packaged discreetly in a message that bears general truths. As a mom whose walked the walk down the aisle in a church behind 6 men carrying my son’s 7 year old body in a hand painted casket I can tell you from my heart…in my mind these weren’t small decisions. I did not and do not take any decision lightly. They’re all life or death. My mind says 2+2=4 and there are no other answers. But my heart says NO…I can’t describe the pain better than one of the visits in the last few months I called the social worker in with us and kicked everyone else out. she looked at me and simply said…”sarah…let it out” and I just sobbed. uncontrollably. I felt so conflicted. damned if I do, damned if I don’t. was I being unreasonable…would I be able to live with myself if I was the one to take the firm stand of trying more options before just going with the crowd…would that be the exact decision I would later regret….am I causing her body to decline…I felt more torn, more vulnerable, more scared then I had in a very long time. She was able to calm me and ask me very legitimate, necessary, difficult questions. ones that HAD to be asked. and I had to get real and I ultimately decided that I needed to let my heart win this one. regardless of the outcome. I never did with Conner, I didn’t know better. I trusted the dr’s for 100% of their expertise. After all, they have the degrees, training and knowledge…but I’ve since learned that a doctor isn’t God…I mean obviously I KNOW that’s not true. But I had to shut my brain off and let my heart remind me that a doctor PRACTICES medicine, he doesn’t have the ABSOLUTE determinations. Only god does. (please know my heart to know I absolutely value and respect our dr’s, I’m not speaking down on ANY dr here, speaking from the freedom I found in my own journey) so I had the dietician come back in the room and the social worker mediated our conversation. I must also say our CF team is amazing and no one would ever purposely try to cause pain…I just did a poor job sharing with them how much my heart was involved…which involves emotions…I held it in. I told the dietician she needed to find a new formula. One broken down like the one she was on, but one where it was higher calorie so Brynlee could drink the volume she needed to all during the day because I wanted that tube out. she thought for a moment…and then I said “is there a pediasure peptide 1.5?” and her face lit up…”YES!” We switched her immediately. Because each can was 1.5 times the calories of the other formula she only needed to drink 24 ounces, or 3 bottles a day. Last month on the new formula her weight was catching back up, so I defined our new goal was to get her to take all of her liquid medications by mouth then I would pull the tube out as long as she continued to gain.
She had clinic yesterday.
I’m crying I’m so excited to share…not only is she taking all of her medications like a CHAMPION…but she’s drinking goal EVERYDAY and her BMI is over the 50th percentile!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! The NG tube is PULLED!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Her lungs are doing amazing!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! and she doesn’t have to go back for TWO MONTHS!!! She is such a champion. and I’m soooo beyond THRILLED for her! but in my excitement it occurred to me…god gave me this message…this experience…for you.
where are YOU feeling discouraged, pressured, so close to giving up…hopeless? despairing? What is it in your life that your going thru the motions with…leading with your MIND and refusing to listen to your HEART…? is it a job? a friendship? a disease? a marriage? My heart feels compelled to urge you to SHUT OFF YOUR BRAIN…break the lies your mind tells you…lies of the enemy that cause pain, confusion, anxiety and worry…and open up and spend some time listening and FOLLOWING your heart. Gods plans are to prosper you and not to harm you…to give you a FUTURE and HOPE! Listen to your heart…and weigh in the counsel of a third party to get the tough questions asked…and you will find your answer. then act on it.
this is a small victory for us. and I know that it will more than likely come up again…because I’m very educated in CF and I know it’s unpredictable, just like so many things in all of our lives. but what I KNOW FOR SURE is that when you follow your heart and it’s in alignment with Gods promises, you will see victory…in whatever capacity you need.
So don’t give up. Never settle. Don’t quit.
It’s gonna be worth it…if even for only a moment…the victory I promise you is sweeter than you can imagine and it’s worth it all!
I also decided it was time to not be so un-bright and un-shiny and my heart told me our journey isn’t about that anymore. So I changed the blog from notsobrightandshiny to joyfilledhope.com
LOVE LOVE LOVE
always always always