Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Sunday, October 9, 2011

What Goes Up.. Must Come Down....Must Go Back Up?

There is definitely no truer statement for a parent who has a child in the NICU.  You will have a day that seems great, and then the next two are awful. Then there will be three great days.. and then a setback the fourth. It's just the nature of the beast... and any other issues on top of it certainly don't help.

When we went to see Meagan yesterday, we came later than usual of course from taking the older girls to the Zoo all morning.  The Nurse told us poor Meagan had been inconsoleable all morning. She said they had tried everything - diaper change, making sure her feedings were filling her belly, re-positioning her, holding her, rocking her..etc.. and nothing would calm her down.  After 3 hours of trying different things, the nurses finally called the doctor.  The doctor came down to look at her - all physical things looked ok, but, apparently Meagan was screaming even for the doctor.  She put her on a semi-sedative in a low dose to help take the edge off of her mood and calm her down - the last thing we want is Meagan getting so worked up that she is stressing out her body, burning too many calories, or, is so unhappy that we can't soothe her.  They also did start her on some antibiotics because her blood and urine cultures came back with positive growth.  The doctor said perhaps this is influencing her fussiness so we'll see what happens over the next few days.  The new blood and urine samples will be read Monday to see if they grew anything new.  If not, the meds would be stopped ... if so, then it's a good thing they were already started.  Either way, Meagan was NOT happy - and she was not herself. So they are treating her very conservatively, which I am happy about. The last thing I want is some lingering infection spreading to her shunt site ... and certainly as a mom, I don't want Meagan so sad. 

We tried feeding again - she didn't really take to it that well.  I'm sure a lot of it had to do with the fact that for "some" reason, she's just not feeling well.  The funny thing about Meagan is that she will open her mouth just fine - nice and wide - ready to eat. But once the food is there, she will not close her mouth to put a seal around the bottle or me, and suck to get milk.  This makes me laugh a little bit because with my other kids, we worked so hard to get them to OPEN their mouths - and now, it seems, Meagan has the opposite problem. The one good thing about the feedings is that through her feeding tube, they stopped the motility agent she was getting (a drug to help her digest her milk because she hadn't been doing it on her own)... and she is in fact digesting on her own now. So in all the negative of yesterday, that at least was one positive step for Megs.

As we enter week 3 of her being away from me, it's definitely starting to get old.  The back and forth and the wear and tear on me emotionally.  What mom has a baby and then just isn't with them? It's the strangest feeling. And there is no closure because you know the baby is 'out there' ... but just isn't physically home with you yet. (and thank God for that - that she is here with us).
 But sometimes, it's like I never even had a child.  There is no crib set up in my room... there are no baby cries.. no yelling at the older girls to stop touching the baby in some semi-dangerous fashion ... no baby clothes in the laundry.. her little cute cloth diapers are still sitting in the box waiting to be used.  But then I'll lean over to pick something up and sneeze and "Ow!".. my belly hurts and I remember my c/section incision is still healing .... or I'll be going about my business and suddenly I feel the milk "let-down" feeling and remember I'm still nourishing a new baby .... or I'll be putting dishes away while the girls color and then Reilly will bring me her picture .. on it she would have drawn our family.. and I see Brian, me, Dudley our lab, and then 5 little girls and an angel. (She never forgets Jack) ... and I remember.. oh yes, these girls of mine have another sweet baby sister who isn't home with us just yet. 

Don't get me wrong - it's not like I ever forget about Meagan - not one second.. I think about her constantly.. it's just such a weird feeling being her mother - but not really being able to be her mommy yet. And I want to be her mommy so badly, it really gets to me. But then something will happen that reminds me about others in the NICU who have it a lot worse.  I had one of these moments this past week.  Meagan's little baby neighbor almost crashed ... monitor alarms went off, and I immediately heard his nurse call for help.  It took the entire NICU staff and the team of NICU doctors being called down to bring that baby back.  I saw the mother in tears and the dad holding her.  It was such a poignant moment for me because it reminded me that I always need to remember those who are struggling even worse than I am.  I felt my gut sink for that family when the baby's alarms were going off... and it wasn't even my child.  When they finally got him stabilized, I remember walking by his pod on the way to go pump.. I happened to look over at his whiteboard ... on it was written "Name: Jackson (Jack)" .... It gave me pause for a moment.. I had never looked at his board before in the 2 weeks we have been neighbors in the NICU.  What are the chances of a little boy with that name being her NICU buddy... just amazing.

I realized this weekend, through all the ups and downs and the ups again, there is ALWAYS someone watching over us.  "Jack" is truly by Meagan's bed! Not in a way I ever thought of - but it was like a little sign that he is there, checking on his sister.  God is always with her, and I know that although sometimes I feel 'robbed' of this time with Meagan - she has an even more special gathering of people at her side. God, Padre Pio, St. Gianna, her brother Jack, and all her Guardian angels.  They may be doing more for Meagan right now than a mommy ever could -- and I just need to keep reminding myself of that.

Not feelin so great at all yesterday

I unwrapped her to change her diaper and she was sleeping so peacefully I had to take a picture of her

Holding Mama's hand for comfort


  1. You are such a wonderful Mommy!!!! This one brought me to tears! Thinking of you all and praying!!

  2. I just got CHILLS when you wrote about seeing that baby's name. Wow.

    Always in our prayers,