Happy 7 weeks Par! Thank goodness the Papa-razzi was there to capture a billion pictures of our little baby boy!
I was frustrated again today--I don't know why I have been two days in a row--I am so thankful for how far we have come--I guess we are just so close and I am growing impatient as Par's mother. At this point, there is less dependence on the doctors and nurses and more dependence on the parents when it comes to how Par is doing. I say this because he has less of a need of medical treatment and more of a need for stimulation, love, holding, etc. from people who will be caring for him. So it is frustrating when Par is doing great with eating and the schedule they have for him seems to set him up to fail. For instance, he is scheduled to eat at 8,11,2,5--but he actually prefers to eat every 1.5 hours during the day and every 4 hours at night--I see this clearly, but there haven't been any changes made to accommodate his needs. I have tried to express this before and I did it again today. I have a feeling this time my thoughts will get to the right person. We'll see tomorrow.
The thing that set me off this morning is the NJ tube--I want it out because I can tell it is causing issues with his eating--he knows it is there and he seems frustrated by it when trying to breast feed (it seems to get in the way more then). When I asked about it being taken out (because I thought it would be gone by now) the doctor said it would probably be taken out sometime next week, but that she'd talk to the rest of the team about it. When I asked about it being removed tomorrow, she laughed and basically said when pigs fly. Par wants to know what the hold up is.
She also delayed Par's MRI for next week instead of tomorrow. At this point, we know we will not be home for Christmas. It is sad but I am glad to know that now--I can just focus on helping Par eat. Our new hope is New Years.
I was stressed today, but I still enjoyed being with our precious son. He ate well and slept a good bit. His 2pm feed was interrupted by his echo cardiogram. Strangely, the guy who did it walked up and said, "Well hey there Par! I have a friend named Par" I couldn't believe it--I was almost certain we had the only one--but nope--there are others out there--and his name also came from his initials.
Par's Gigi arrived today about 5pm and got to FINALLY see Par in person with his eyes open. He was busy eating but gave her some lovin' a little later. I was supposed to breastfeed at 11pm tonight but Par was hungry at 10pm--so I gave him a pretty big snack. I knew he would probably last longer than 11--and then I didn't know how he would even do (because he would be so tired)--plus, I didn't want to be driving home at 1am...so I left and they gave him a bottle. I can't wait to be home so I don't have to make these decisions that make me feel so guilty!
We received a precious gift from the March of Dimes today--it was an ornament made into a Rudolph out of Par's own footprint. This was done for all the NICU babies...how embarrassing that our son's monkey foot print barely fits on the snowflake!
We continue to thank God for his precious gift of this amazing child! Praise God for his gifts of love! We also lift up Par's friends and pray for their progress.
Thank you for all of your thoughts and prayers.
Love,
Liz, Papa-razzi Rusty, & Par
9 comments:
The waiting must be so difficult and yet, you are correct, you are almost there, but still more work to do. Sorry to hear Par did not get in the live Nativity scene. But is he singing Christmas carols to all the staff? To little Ella?
Hang in there.
Christmas Blessings
Cheryl and Chauncey
You all have been so positive throughout this whole NICU experience...it is only normal that you would have some frustrating days! It's so hard to be a mama and/or papa sometimes...especially when you know what your child needs and can't do much to change what is going on!! That love and understanding for what is best for your baby will continue forever! I hope you have a good day today and tell Gigi we hope she loves lovin' Mr. Par.!!
Can't wait to see him ourselves someday soon!
love - leslee & family in NC
You guys are more patient than I could be!! Par is so blessed to have such wonderful parents!!
Love and prayers,
Zandra and Emaline:)
It is great to hear that Par is doing well. You will be home before you know it. Keep growing Par. Love Allison
We are so proud of how positive each of you have been through this whole experience. If the roles had been reversed we don't know that we could have done it. Hang in there because Alabama is calling your name. Tell Gigi we said hello and we hope she got her card. May today be a more blessed day. Love to all of you, Jim and Sheila
I am SOO feeling your frustration with the breastfeeding. I nursed all four of mine and they were never on a "tidy" schedule. They practically nursed all day and were all cute chubbo babies. I hope they listen to your intuition because I think you are right on with what is best for sweet little Par. Nonetheless, you seem to handle these situations very well. Our prayers are with you!
Blessings to you,
Lisa
The rigid schedule reminds me of what I read in a book my Mom used when I was born----only feed every 4 hours. Do not pick up in between, etc, etc. Having my girls made me wonder how anyone could do that. So frustrating when your instincts tell you no. Do hope that stranghtens out for you. Know that part of being a parent is that there will be days of frustration in one way or another. It is normal! When those days happen, be sure to look for the good that has happend that day too.
Peace,
Anne & Bob
Hi Liz -
Merry Christmas to you, Rusty and Par. I know you would much rather be celebrating in Birmingham, but at least you have the best gift of all with you in Florida - that sweet little baby boy!
Much Love and Joy for the New Year!!
Alex, Robby and Holt
Liz,
I came by to check on you all - I so wished you all would be home but also know that Santa visits NICUs too! Thought I would share:
Twas the night before Christmas, and in each isolette
Little creatures were squirming and getting all set;
Machinery sat by their bedsides with care,
In hopes that good breathing skills soon would be there.
Day shifters were home all snug in their beds,
As visions of overtime danced in their heads;
While preemies on ventilators, and some on CPAP,
Had just settled down for a long winter's nap...
When out in the hall there arose such a clatter,
The residents woke up to see what was the matter.
Away from the sink I flew like a jet
To make sure all was well at my baby's isolette.
Some bilirubin lights with their powerful glow
Gave the lustre of mid-day to babies below,
When, there before my wondering eyes, it would seem,
Was an oversized stroller and a medical team.
With a handful of needles with which they could stick you,
I knew in a moment it must be St. Nicu.
More rapid than eagles his specialists came,
And he whistled, and shouted, and called them by name:
"Now, Nurses! Now, Residents! Now, Neonatologists!
On, Social Workers! On, Respiratory and Occupational Therapists!
From the front of the unit! To the end of the hall!
Now dash away! Dash away! Dash away all!"
Up to each baby's cribside they flew,
With the stroller full of toys, and St. Nicu too.
And then, in a twinkling, they stopped at each bed
And tucked in the babies and got them all fed.
As I looked at my baby, and was turning around,
Down our aisle St. Nicu came with a bound.
He was dressed in red scrubs, and I could instantly tell
That his clothes had an obvious hospital smell;
A bag of stuffed animals was flung on his back,
And he looked like a peddler just opening his pack.
A little red pen he held tight in his teeth,
And a stethoscope encircled his neck like a wreath.
He was chubby and plump, with a few extra pounds,
And I laughed when I saw him there doing his rounds.
A turn of his clipboard and a twist of his head
Soon gave me to know I had nothing to dread;
He spoke few words, but came straight to my side, And running down his face was a tear he had cried.
And laying his hand on the back of my head,
He gave me a nod, and slowly he said:
"Each night you come here you're aware of the danger,
But your baby is loved by the One in the manger."
Then the medical team gave a thumbs-up and smiled
And St. Nicu placed an animal next to my child.
But I heard him exclaim, as they rolled out of sight,
"Merry Christmas, tiny baby, and have a wonderful night!"
With thoughts, prayers & Lung Function chants!
Elizabeth
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