Wednesday, September 2

The Wall

Where to start? I know it's been awhile but each day since Friday
I've wanted to write and just lost the lust. Every day has started
one way and seemed to end another.

Saturday it was decided that Bryce would be extubated again to try
CPAP. We waited all day but it never happened. Another baby on the
unit was "desperately sick" as Dr. Hodges said and they wanted to wait
until they could give Bryce more attention to extubate. So we went
home on Saturday night. We weren't there long as we wanted to be back
early for the extubation on Sunday but we had a great night. Lauren,
Jeremy and Danae came by for a couple rounds of Farkle and loads of
much needed laughs.

Early Sunday morning I called my mom, who was sitting with Bryce all
night Saturday and from very early Sunday morning, to check in. She
unfortunately had some bad news that she and our nurse decided she
should tell me before I walked into it. The other baby who had been
desperately sick the day before had passed away over night. I hung up
the phone and just cried.

I can't think of a single thing more unjust than a sweet, innocent
little baby going through everything they have to endure in the NICU,
fighting for their lives every single day, to lose that battle. It
breaks my heart.

That poor baby and that poor family. I prayed for them when I prayed
for Bryce but it never actually occurred to me that this could
happen. Each time I enter the unit now, I stand at the scrub sink
trying my hardest to wash away the dirt, grime and germs of the
outside world while staring at the empty room at the end of the hall
where so many times I saw him crying in his bouncy chair or being
paraded about by his nurse.

Babies come and go pretty steadily around here but when they go, when
they leave their empty rooms behind, they are supposed to be home
playing, learning, laughing and growing.

And so it was with a heavy heart and a dampened spirit that we
returned to Bryce on Sunday morning for his third CPAP trial. He
lasted about six hours but he struggled most of that time, gasping for
air and dropping his heart rate. He tried his best but just couldn't
do it. We were all so relieved when they finally decided to
reintubate him that evening, especially Bryce. He looked up, wide-
eyed, at his tubes as if they were his old friends back at last.

It's hard for a mother to watch her child struggle, to helplessly
stand by as they work so very hard just to breathe. I hope and pray
every single day that someday we won't have to endure such things,
that Bryce will be blessed with better days. Days of uninhibited
laughter and play.

Monday morning I awoke a little bleary eyed from a long couple of days
and little rest. I pumped as I do first thing every morning and
walked to the freezer down the hall at the Ronald McDonald house to
put my milk away. I opened the freezer to two bottles of milk with
the name of a baby that would never have that milk. I broke down. I
couldn't help but think that his poor mom had walked my same steps
only to go home without her precious boy. I returned to our room and
to our bed, where I stayed until late in the day. Finding it hard to
muster the motivation to rise again, to dress or shower or return once
again to the NICU, I just lay there. Hour after hour I went over and
over in my head how and why this could all be happening. How is it
that this has always gone on and will continue to go on with so few
knowing. I didn't know. Before Bryce, I had no idea.

Eventually I did get up and I did return to the NICU. I walked in to
knowing and understanding faces in my new friends, our nurses and
RTs. Without explanation they knew, they've seen it too many times
before. Jennifer said it best, she said, "you hit a wall."

And then she said they all talk about how amazing I am because I
hadn't hit it sooner.

It's a nice thought but I think I've hit that wall so many times I've
become accustomed to it. I'm just usually much better at picking
myself up, dusting myself off and pretending like everything is honky
dory.

That evening I held Bryce for several hours. I stared at his face and
kissed his hand, I cried with him and sang to him and felt a sense of
renewal merely from his being.

15 comments :

  1. Oh sweetie! What a wall you hit indeed. I'm so sorry for the family and for you. It is such a hard realization that sometimes they don't get to come home. I was just like you, I didn't know anything about life in the NICU until it hit me personally. And even when it did I just didn't understand how *much* it all is KWIM? It never occurred to me how serious the situation was, until a little while later when I stopped to breathe and then it hit me.

    I will pray for you especially hard today. Many hugs to you.

    Lisa

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  2. I haven't commented before (I don't think) but am following Bryce's progress. I am sending all of hope and strength I can your way. I can't imagine how thick and high that wall was but soon it will crumble away and Bryce will be cooing and crawling and then running to his mama and daddy!

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  3. We love you guys and we pray for you all every day!
    I wish I could just give kisses to all those little babies and make it all better.

    Love,
    The B-saus

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  4. You guys are still in my prayers. Hang in there! I can't pretend to understand what you are feeling, but know that God does. When you say you've just been picking yourself up everyday, that's God holding you up. He's there with you and in you.

    -Sara P.

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  5. You don't know me....I'm a friend of an old friend of yours. I'm a lactation consultant that works with families of preemies and had my own baby "near term" after months of hospitals and medications and bed rest. Like you said--so many people just don't know. I've held the hands of so many mothers as they work through the scary world of the NICU and I just wanted to let you know.....I know. I see how hard those babies fight and I see how strong their mothers are--how strong you are. Hugs and love.

    -Kimberly

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  6. So many things in life are not fair and leave us asking why. As a L&D nurse I am apart of those nightmares and find myself often going up to our NICU to see our babies. It hits heavy in all of our hearts when they don't go home but we are uplifted time after time when our really sick babies pull threw and thrive. We have reunion days when ex Nicu residents come back to say hello and show off how well they are doing. To be honest I think it helps us more than the parents. I pray that you will one day become apart of that group of survivors and thrivers. In my heart I look forward to posts of Bryce playing at home and continually capturing the hearts of those around him as all babies should. Your family will remain in my prayers~your friend in Baltimore, MD

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  7. Katrina,Caleb, My heart and prayers are with you as always.I'm so sorry for the family that lost their child.My prayers are for the both of you.For God to give them the strenght to get through the coming days,weeks and months.And for your little family to try to build up your courage to trust that God is there for you to lean on.The day will come when Bryce will do well on his own (breathing) He has come a long way.God is good.Read back over the story of his birth and you can see a mircle has been made. I know the fear you must feel when you realize that it could happen to you.I'm seventy two and my babies are grown and I still get a heart stopping panic when I think I could lose one of mine.The only way I have gotten through being a mom,granny,and great granny is to let go and let God.He has never let me down.Your Bryce will be going home with you when the time is right.I know that in your heart you can feel that this is true,So, please try to hold on to the thoughts of the good times coming with your son and your little family.Bryce is working hard to do his part.It will happen.Keep believing!
    God bless.
    Granny Spriggs

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  8. Trina,
    I wish I had the words to wash all yours and the babies hurt away. I do have faith, though, that you are strong. Bryce is in good hands and there are many who love all of you. I am so proud to be your aunt. We are praying for many good days. We will see you soon.

    Love, Aunt Gene

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  9. Katrina, Caleb, and Bryce-

    You do not know me either. I am also a friend of a friend of a friend. About 2 months ago, your blog was introduced to me by chance, and I have continued to follow your story through the days and weeks. Each time you post a new entry, I stop whatever I am doing and dedicate myself to reading your accounts of the most recent happenings in your lives.

    Needless to say, but I'll say it anyway with unwavering sympathy, I am left completely heartbroken for you and the battles all three of ou contniue to fight. I am left stunned by your strength, amazed by your ability to "pick yourself up, and dust yourself off." Out of all of the stories I hear- news, friends, family, etc- Bryce's story, your story, has moved me in the most profound way. I commend you for your resilience and fortitude- even in time such as these where "the wall" knocks the wind out of your sails... I applaud you simply for living to feel the next moment.

    I cannot empathize with your heartache, but I can tell you that when I read your blog, I can hear how desperately your love your baby boy. I can hear your sing to him. I can see you holding him. And I think it is absolutely beautiful.

    I don't know you... but I wish I did.

    My love and prayers go out to you- all three of you.

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  10. Aunt Christi here, I must say I thoroughly enjoyed my visit last night. I especially enjoyed getting to help with bath time (even if I did boot my little bro out of the way;) I wish I could be there everyday, but one thing that I do see by NOT being there everyday is the significant changes little Bryce makes. I love you 3 so much, more than words can express! See y'all tomorrow!

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  11. I completely understand where you are coming from. A good friend of mine who I met in the NICU at St. Davids was in a similar position. She had twins at 24 weeks. Blake was a couple months old when they were born there was an empty spot next to him but they moved Blake's bed so that the twins were right next to each other. Her little boy struggled and ended up passing while the little girl got stronger. However when I came in the next morning to see Blake they had put Blake back in his original spot next to the little girl and the little boy was gone. I knew immediatley what had happened and broke down. I was glad to see my lil man but how could I face these two parents that were so wonderful and had just lost their little boy. And on top of that my son was in the spot where he had been living for such a short period of time. I could hardly handle it. All I could do was sit and hold him for hours at a time and cry over him. I was so grateful to have my precious angel but felt so, badlly for their family. For several days I could not look them in the eyes, I felt like it was punishment somehow for them to have to see my little baby and not theirs. Time went on and we grew closer and are now very good friends, but to this day I think of her on his birthday and how things might be different for them. I pray for your family every night and send lots and lots of love your way. It will get better. Please understand that God won't give you anything you can't handle. I truly believe that he knew our families would survive and grow stronger in times of desperation and it has proved true time and time again. Give Bryce lots of love for us from Houston. We are coming up in October for our NICU renuion and would love to meet you guys if you are open to it. God Bless.
    Pokluda family

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  12. I truly admire you and Caleb for your strength. Just remember that there are many of us thinking of you and praying for you every day. No matter what happens, cherish every moment you have with Bryce.

    Love,

    Aunt Pat

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  13. I hope today has been better for you guys. Every day is a new beginning. Love from Houston

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  14. Babies die in the NICU, its a terrible truth, that luckily most NICU parents never fully realize. I am sorry that you had to while your precious baby is still there.

    I can tell you that when my daughter passed away it was very clear to me it doesn't happen all that often. I can also tell you that even though it was greatly unfair, I was so grateful for that NICU time we had to bond with her and enjoy her. It wasn't the ideal babyhood, but it was hers and I wouldn't trade it for anything in the world. My heart goes out to that family, and to you. I am sure Bryce will go home one day soon.

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  15. Katrina - Allie and I have been following your blog since Jada and Reese were born at 23 weeks gestastion a little over 7 weeks ago. Thank you for continuing to write about your daily thoughts and emotions. We understand what you are going through (one of Jada's NICU buddies passed away a few weeks ago...it totally floored me) and continue to pray for you, Bryce and Caleb.

    Dave & Allie Alter
    www.alterfamilyblog.com

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