I want to remember…..

I want to remember today….

I want to remember my sweet Neely’s tear soaked hair….tears shed by her Mommy during her mid-morning feeding…the feeding where she only took 30mL….instead of 70…….

I want to remember because…

…one day I will be joking about what a chubby baby she is….
…one day I will be begging her to sleep through the night…
…one day I will want to encourage another momma of a heart baby to not give up the fight…

I don’t think I have the energy to cry anymore….who knew feeding an infant could be this complicated….

I am beyond thankful for the eagerness to eat that my other three had….

I am thankful that they woke up screaming every two hours like they were starving to death….

I am thankful for all those “awake” times when I was ready to pull my hair out with the other three…

I miss having those with Neely….this time around, I don’t have all the answers….my little one doesn’t respond in a textbook manner to normal baby “issues”…

She is a heart baby….

And she has this momma’s heart…..

I have decided that I think that all the doctors that give you suggestions, should come and spend the day with you and help implement those suggestions….

Like how exactly to get 560 mL into a baby in a 24 hour period when she falls asleep before she can finish almost every bottle….any ideas gentlemen?

Sounds great in theory but this momma is discouraged…

…discouraged that the addition of a teaspoon of formula to her bottle causes her to only eat HALF of said bottle….doesn’t really help, huh?

…discouraged that since she is not even eating her recommended 52 mL a feeding, we’ve decided to go up to 70 mL a feeding….again….not really helping….

….discouraged that she is not having as many wet diapers as she needs to but then we put her on Lasix to help keep fluid off her lungs, so then the wet diapers increase but so does the risk of dehydration because she is not taking in enough fluid….see how the discouragement just keeps growing?

“Likewise the Spirit also helps in our weaknesses.  For we do not know what we should pray for as we ought, but the Spirit Himself makes intercession for us with groanings which can not be uttered.” Romans 8:26

Right now this momma is thankful for the Holy Spirit….I don’t even know what to pray for anymore….this is one of those times that I beg all of my prayer warrior friends to lift us up…to pray for Neely to have a great, insatiable desire to eat, for her momma to have the patience required to remain her number one cheerleader, for her momma to not take out all her frustration on her husband and other three children, for wisdom for us in making decisions about Neely’s care….

I hate to ask for help….but in this case I’m not hesitant….your prayers are greatly coveted….

We had a good first official visit with Neely’s cardiologist, Dr. Carlo on Friday.  His target date for her surgery is early October…she’ll be one of the first patients to have her surgery in the new Children’s Hospital.  He says only two things would cause us to have surgery earlier…

  1. labored breathing because of fluid on her lungs that we are not able to manage on Lasix
  2. lack of weight gain (we had lost three ounces at our weekly weight check this morning….hence the reason for all the earlier tears today)
He encouraged us to stop supplementing her breast milk with the formula supplement and to instead add corn oil to each of her bottles…GACK!  Sounds appetizing huh? 
We instead are using coconut oil…they are both medium chain triglycerides and they use them in the NICU to put weight on premature babies.  Who knew!?!?!?!  We just started on Saturday so hoping we will see some improvement at her next weight check.
Another suggestion from the doctors and lactation consultants is to pump and separate my foremilk and hindmilk….haven’t started that yet….I know it would be a wonderful boost to her calories but I feel like I am hanging on by a thread most days and feel overwhelmed at the thought of adding in this extra step during pumping….how selfish does that sound?  Sounds very sane when I think it in my head but not quite so much when typing it to share….
Maybe soon the cheerful Jenifer will be back to share a post….a post that we are eating like a champ and  gaining weight by leaps and bounds….looking forward to seeing “that” Jenifer again….
Until next time,

2 thoughts on “I want to remember…..

  1. Hmmm, THIS Jenifer sounds like a champ to me….Champs work hard and keep on keepin on, folks who have it made don't get to call themself a CHAMP…No Ma'am…. I will still come spend the day with you ANY time you need me. Love, Aimee


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