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Friday, September 3, 2010

Nicole's St. Louis Update 9/1/10

When I visited Wrenn today, I sat in my chair four feet from her bedside and realized that the medical equipment was literally taking over the room. The pole that holds her medications is overflowing with four different types of sedatives, electrolights, two antibiotics, calorie additives, breast milk, a nebulizer called Flolan and I'm sure something else I've missed, not to mention the medications that are administered through her broviac a couple of times a day.

The larger machines include a ventilator, N20, TPN (blood gases being monitored), and various cords taped to her chest registering vitals. It's madness in the room but when I look into her eyes I only see my beautiful little miracle, Wrenn. Sadly, after last week's infection I haven't seen her pop open her green eyes more than once a day. I haven't held her since last Monday. Due to the urging of my nurse, Angie, I decided to see how Wrenn would tolerate a little bonding since I knew we both needed it.

With everything I listed above, it took two nurses and a respiratory specialist to move her two feet and into my arms. Shortly after getting situated her oxygen quickly dropped from 95 to 40. They called in the doctor and realized she was pressed up against the side of her lung that is clogged, most likely from excess secretions. Once we repositioned her she recovered nicely. Then, thirty minutes later, she was gasping for air and her oxygenation again fell to the 40's. I found myself holding a Smurf and panicked as she struggled with each breath. It was the worst feeling in the world and probably the worst moment of her entire disease. She was blue, and I felt like I was strangling her to great discomfort. I asked to put her back and watched the nurses get her settled to a comfortable position. Within minutes her oxygenation returned to the 90's.

It is horrible, realizing that holding your daughter makes her miserable. I realize that sedation is necessary when warranted and that she is a very, very sick baby. Her lungs are not going to work, even in the very poor way that they do, much longer. So, I have decided that the benefits of holding her don't outweigh her health and this saddens me like you can't believe. There is nothing natural about seeing your child cry and just letting her cry until she is drugged back to calmness. Nothing is normal and it all breaks my heart. I keep praying that she will one day breathe on her own, one day cry over something for which I can provide comfort, one day swim in the ocean and just be a normal little girl. Days like today make me feel as though things are many moons away.

Helpless is how I have felt for many months. Now I am frustrated, angry and feel like I have hit rock bottom. I keep saying it's temporary. I pray for a tomorrow. I hope there's a next year. I really work hard to keep my head held high. The bottom line is, when Wrenn has a good day, so does Mommy. I always prefer the good days because the bad days are becoming unbearable.


Anonymous said...

God bless u n comfort u.. u are as strong as ur Wrenn is..and u both are courageous fighters..u both are inspiration to us all..and our faith is made stronger by hearing ur words and ur testimony.. His Arms are around u both... much love n respect to Your Family! May u receive ur miracle soon..

Joy on September 3, 2010 at 6:45 PM said...

Oh Niki, I just want to wrap my arms around you and give you hugs. Wrenn is a miracle and a fighter and he gift is coming. You feel free to have a break down and let it out, you need to release sometimes. We are thinking of you and if you need to talk day or night I am here sweetie.


sophanne on September 3, 2010 at 7:00 PM said...

sending you compassion as well. I'm so sad with you.

Kathie on September 3, 2010 at 7:04 PM said...

My heart is just breaking for you. My eyes are welling up. I am just so wanting to give you a mom to mom hug right now. Know that we are thinking of you and increasing our prayers always.

Anonymous said...

Praying for you guys.

Http:// is my nephew and we know how hard it is to watch a little one in a crazy situation.

Amanda Kern on September 3, 2010 at 8:37 PM said...


mwiesner on September 3, 2010 at 9:18 PM said...

Omg!! Nikki, I am so sad for you. THANK YOU for taking the time to update us when I know your heart is breaking. BIG, HUGE prayers coming your way!! Prayers for healing as well as comfort and peace. There is really nothing to say but that. Hang in there, friend!!


Natasha on September 4, 2010 at 7:02 AM said...

This is heart breaking. You & Wrenn are in my prayers xx

Anonymous said...

I think about you every day and when I do I visualize a pair of perfect baby lungs coming your way. Love, Lindy

Miranda and Roger on September 4, 2010 at 9:06 PM said...

Hi Nikki
I'm a friend of a friend and had both of my boys in NICU for 9 weeks. Reading your post reminded me of a really bad night I had with one of my boys. We always hesitated in wanting to disturb them but knew that we and they needed us to hold them. And as you know, you'll have a good day and awful day the next. I went in for the evening visit excited to spend time with my sweet boys and be able to hold them. I left so upset feeling like a failure of a mother. One of my sons A/B'd on me 7 times in about 30 minutes while I held him. He was unsettled, agitated, irritated and as I continued to remind him to breathe I had to do the same for myself. But the next day was a new day. As is everyday in NICU. Take each day as just that and remember that it's one more day closer to taking her home. If ever you want to talk, I'm available. Or if you want to talk with someone with more similarities like your currently experiencing I'd encourage you to contact Chin up. Get your confidence back up and know that you are doing an awesome job.
Miranda 512. 658. 8984

Beth Bates on September 28, 2010 at 8:47 PM said...

I know you may not remember me but I am Jay's mom and we met when Will was in the NICU! I think of all of you many times during the day and offer prayers for your strength and positive days for Wrenn! Please tell me if there is anything else I can do for all of you...........
Have a blessed day!
Beth Bates


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