123 days and counting . . In the NICU

CynRO12

Hi All,

I haven't posted in a while because my son came home (ya!) after 101 days in the NICU. My daughter on the other hand is still there, day 123 (Uuugghh)

She's having a hard time feeding/ swallowing. ENT is involved and all the uninvasive tests have been performed and have come back with mixed results. We now have a family meeting tomorrow about the invasive tests. I'm just sick about it! The doctors think it may have to do with immaturity and time will fix it, yet she's at an age where it should be getting slightly better not the same or worse.

It's so stressful! Trying to enjoy my son finally bring home, getting him on a schedule, making it back and forth from the hospital to spend time with my daughter, and making time for my 9 yr old
And now the possibility of surgery. My god when does it end??

My DH just sent me to my room with glass of wine and told me to relax, breathe, and watch a mindless tv show to get my mind off of the meeting tomorrow.

Plz send T&P to my daughter!! And thnx for letting me get that out! It's very therapeutic to say it all out loud

dunnmommy

Congratulations on your DS coming home!

Good luck with the meeting tomorrow! I remember those meetings and I always felt so anxious before they began. I will definitely send out T&Ps for you and DS!

jbranden12

So glad you have your DS home! I can't imagine your crazy schedule, but I am sending you strength and know you can get through this!!

Missi576

I hope things are going well today.  We were strong armed into a g-tube as well.  She used it for a whole week and a half before I had her eating without it.  Sadly, it couldn't come out for two months.  On the other hand, they can be amazingly helpful in bridging where a little one is and where they will be, and there is no better place to grow towards that than at home.  If you do go that way, yes, surgery sucks.. if they don't end up really 'needing' it, it sucks.  If they do need it though, and it gets them home to you, they can be absolutely amazing.  

Have they tried different feeding schedules?  They only tried ad-lib and every three hours at different quantities for us.  It took me a month of fight with her to figure out that our little Alex wanted to eat a smaller amount every two hours.  From there, she is just gone crazy on feeding properly  

I know it sucks and my heart goes out to you (as does my husbands when I read this to him).  Olivia came home a full month earlier than Alexandria.  My husband and I could no longer go to the hospital together and juggling two older kids, a baby at home, and one in the hospital was emotionally and physically draining.  She will come home soon enough and it will be a whole new ballgame!  Amazing.. tiring.. and way too many doctors appointments, but you learn how to fly by the seat of your pants and carry way too many things to all of the crazy appointments.