I thought the ups and downs of the NICU would be the end of the drama but there are similar ups and downs now that we are home. This last week had me learning about acid reflux formulas, resulting constipation, mixing formulas to balance these concerns and spoiled formula. Just imagine the pain and discomfort my poor girl suffered while I figured these things out and the sleep I missed out on while she suffered :-( The "wins" from this past week include a whole 4 days of no NG tube and some serious bottle drinking! While I did have to NG tube her eventually (not sure what slowed her down, acid reflux, constipation or spoiled formula), it was a great run and she even gained weight this last week. She pulled her tube out again today so we'll keep it out until I have to put it in. Maybe if we can find the right formula balance she won't need the NG tube... a girl can hope!
Other good news is I finally had a therapy/home nurse visit that didn't leave me in tears :-) Gesina is doing so well that they were impressed with her progress, especially given the challenges we've been facing. She's taken full 4 ounce bottles in 20 minutes like we want her to. She is also making more eye contact and not looking upwards so much. I feel we are starting to get her "back" from the NICU experiences. What I mean by that is she had some odd habits (eye's rolling up, greater disorganization issues with feeding, little eye contact) that we are overcoming more and more every day. She is even starting to touch toys with her hands and her NG tube, of course :-) so it's nice to put all the NICU stuff behind me. Kimberly and I have even taken her to the grocery store, Target, AND the frozen yogurt place and her head didn't spin with projectile vomit spraying everywhere... yeah, too many horror movies on my mind :-)
Don't get me wrong, it hasn't been all butterflies and rainbows. My family have worried about my sanity and commitment a few times as I've stumbled through this last week. I've had quite a few moments where walking away to regroup was necessary... but with everyone's encouragement I've come back around each time. It really does take a village (even a virtual village if necessary) so a big thank you to Adrian, Kimberly, Mom and Monica. Sadly, your help will be needed for years to come! Rome wasn't built in a day!
WOW...lol.....you've had quite the week! Okay, the formula thing? That's not uncommon. It's ok. OMG about the 4 days without the TUBE.....!!! That's HUGE!! Reaching for toys, eye contact, these are Awesome awesome things to hear...! yeah, it takes a village...don't EVER think it's "just because" she's had a rough start either...There's a young mama not far from here who has been dealing with her baby throwing up at least 50% of her formula, they are NOW on her 6th one. Not to mention the bloody rashes covering her face everywhere her saliva or formula has touched it. She's about 3 weeks behind Gesina in age, as of LAST WEEK, she's only gained 1 pound since birth. That bothers me. Her Dr's aren't concerned...????? She's getting settles(Gesina) Babies don't just "adjust" on a dime. To date, she's not "been home" as long as she was in the NICU. Personally, I think ya'll are doing amazingly well! Of course, had you been given the CORRECT information from your home consultations, it prolly woulda been easier than it has.
ReplyDeleteI know you're mama and friends and family don't mind one bit lending a hand or an ear. To date, I haven't heard anything from you that makes me think your aren't thriving. Special needs babies or not, all new mamas have to adjust to changes. You, my dear, have had to adjust to more than most. You've had moments of "fear & tears"...you've dried your eyes and bounced right back. You may be a little battered, but you are not beat by a long shot! None of us have ever doubted your capability. Ok, I can't speak for everyone, but all I've seen are people who believe in you:) You've finally had a week of real, steady, positive progress. I will be sharing this with who are waiting for updates, there are about to be some really happy folks:) A lot of us needed this good news today:)
About the village...? ALWAYS, a smart mama knows it's a good thing to have a village...cause someone in that village is gonna have a willing ear, a tissue, a cup of something and kick in the pants to get you started again:)
You are amazing! You and Gesi continue on my thoughts! Sending hugs!
ReplyDeleteIsn't that interesting about discovering the acid reflux part of the puzzle. I think this is one of those growing up lessons- that it's not the perfect person who wins, just the one who keeps trying and stays in the game. Best of luck at home. It's ok to call in support.
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