unique

Life in the NICU is difficult. It is overwhelming. It is humbling. It can be inspiring. It can be depressing. It is stress inducing. Everything about it is unique. Just like every parents story. I have gotten to know the parents of the babies like Lucy who will be staying for awhile. I envy the parents who only have to experience the NICU for a couple of days or even a week. We have spent everyday at least twice a day for the last 6 weeks driving to and from the hospital. We ride up the elevator cautiously excited to see Lucy. We walk up to a door that is locked and have to be buzzed in. We have to wash, no scrub, our hands for 3 minutes before we even step foot into the unit. We then put on hospital gowns over our cloths and head over to Lucy's isolete. Each monitor that beeps while we walk over to see Lucy makes my heart skip a beat. The nurse updates us all the days happenings. There are days when all we hear is bad news. "She is just not tolerating her feedings" "She seems to have her heart murmur back" "She is up to 50% on oxygen and there is a chance she has chronic lung disease" "Her urine output is not very good so we are checking her kidneys" "She is having a head ultrasound today to check for bleeding in her brain" "She has to have a blood transfusion, again" "No sorry you can't hold her" "She hasn't gained any weight" "She has lost weight" (This by the way is just some of what we have been told on our journey with Lucy) Then there are days when the news is great "She has been on room air all day" "Her PDA has closed" "There is no bleeding in her brain" "Her kidneys look great" "She is off the CPAP" "She has gained 2 ounces" "You can hold her" Everyday holds new information. New fears new joy. I would really never wish this experience on anyone. Whats hard is explaining what it's like to have a baby this small, this fragile to others. I am however amazed at the power of medicine and of course prayer. Without either Lucy would not be doing as well as she is. I still question Gods plan here, why we are having to go through this sort of pain. I am trying to embrace this time in our lives and soak in all the bad and the good. I am finding small blessings in the NICU and that is helping me just get out of bed in the morning.

growing

daddy

There is just something special about a daddy and his little girl. Watching Mike with Lucy is magical. His intense need to protect her is something I know he will always want to do. He is incredible with the twins and they just adore him. I know when Lucy is finally home and starts to grow up their relationship will be something special. Something that I will never have with her, and that's ok because I love being able to be apart of the beauty of his love for his daughters.

2

Lucy has come so far from last week. She is breathing better, she is eating better and now she weighs a whooping 2 pounds!!! She also had her eye exam this week and it looks like her eyes are ok, just immature. They also performed another head ultrasound to check for bleeding in her brain and everything looks good. It was definitly a good week.

dancing

In the NICU the nurses and doctors continually say "two steps forward one step back" This is so so true. What we have experienced is much like learning a new dance. We are tripping all over the place. Not finding our footing. Forgetting to listen to the rhythm of the music and allowing our bodies to flow freely. We are trying to control the situation instead of just letting it happen. Lucy is doing much better than last week. She is still on the CPAP and is breathing on 21% oxygen which is great. She is eating better and is slowly putting on weight. This is our two steps forward. Last week was our step back. The dance of the NICU is difficult to learn. Lucy is teaching us though. Through her we are learning that stressing will do nothing for us. Worrying and fighting and fear will only hold us back. It will just keep us from learning a beautiful dance. A dance that in life not many get to learn but one I feel blessed to learn. There WILL be a time when we look back at this time and remember all the scary moments and then I will kiss my sweet Lucy and thank God for getting us to this point, for teaching us this dance of life.

prayers

When my mom got sick I prayed everyday for 2 months that she would get better. Every doctors appointment I would pray would bring good news. And every doctors appointment would bring worse news than before. But still I kept praying. Even in her final hours, I sat out in the living room praying. At that point I was just praying. Praying for whatever God wanted. He chose to take her. After Lucy was born I again started praying all day everyday. In the beginning she seemed to be doing well. I finally felt that my prayers were being heard. Now though Lucy is going backwards. She is back on the CPAP and has had a 3rd blood transfusion. She seems to be struggling so hard to breath. I am in fear again that my prayers are getting lost in translation. That I am not praying correctly. My prayers couldn't save my mom and now it seems that they are not helping Lucy. I am so scared. I don't know what is normal here for a preemie like Lucy. I don't know anyone who has gone through this. I keep hearing stories from others about someone they know who knows someone who had a micro-preemie and now that baby is doing great. I don't know how much more I can handle. I feel very weak. I feel so helpless. I am her mom and I should be able to heal her. All I can do is sit and pray. Sit and pray. Sit and pray. Am I being naive in thinking that my prayers are not being heard? I believe so strongly in the power of prayer and I want to always trust that. Please pray for Lucy. Pray for her to grow strong. Pray for our family to regain the strength we had in the beginning of all this. Just pray.

party

My sweet mother-in-law brought home a dozen red heart balloons the other day. The kids were excited to play with them and enjoyed running around the house and the back yard with the balloons. Slowly but surely, one by one the balloons floated away, up to the sky they flew. Today there were 4 left. Brady had just finished lunch and went and grabbed a balloon. He went outside and stood quietly. He spook to the balloon and gave it a kiss and then sent it flying. He stood and watched it float away all the while smiling. He came inside and grabbed another balloon. He ran back out with it and did the same thing. He came back in and grabbed another balloon and handed me one as well. I said "where are the balloons going?" He replied, "up to heaven with Grammy. Now she can have a party with all the balloons" I love my son. He really believes that heaven exists. He never questions it. He has such peace in him, and I know it is because his faith has not wavered since the loss of my mom. He has shown me to just trust and know that she is in heaven with Jesus.

poem

How Preemie Moms Are Chosen~*~
(Erma Bombeck)

Did you ever wonder how the mothers of premature babies are chosen?
Somehow, I visualize God hovering over Earth, selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to take notes in a giant ledger.

"Armstrong, Beth, son. Patron Saint, Matthew. Forrest, Marjorie, daughter. Patron Saint, Celia. Rutledge, Carrie, twins. Patron Saint...give her Gerard. He's used to profanity."

Finally, he passes a name to an angel and smiles. "Give her a preemie."

The angel is curious. "Why this one, God? She's so happy."

"Exactly," smiles God. "Could I give a premature baby a mother who knows no laughter? That would be cruel."

"But does she have the patience?" asks the angel.

"I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it. I watched her today. She has that sense of self and independence so rare and so necessary in a mother. You see, the child I'm going to give her has a world of its own. She has to make it live in her world, and that's not going to be easy."

"But Lord, I don't think she even believes in you."

God smiles. "No matter, I can fix that. This one is perfect She has just the right amount of selfishness."

The angel gasps, "Selfishness?! Is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she will never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't know it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says momma for the first time, she will be witness to a miracle and know it. I will permit her to see clearly the things I see-- ignorance, cruelty, prejudice-- and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."

"And what about her Patron Saint?" asks the angel, his pen poised in the air.

God smiles. "A mirror will suffice."

bittersweet

So yesterday was amazing. I can't stop thinking how good it felt to snuggle my little girl. I got to kiss her sweet face and whisper everything I had been wanting to tell her. I don't know when I will get to hold her again. But I know each time will feel blissfully beautiful. When I left the hospital I was on a high. My first thought was I need to call my mom. Then the ache in my heart came back. The lump in my throat grew large and I felt torn. I wanted to stay in the moment. Grief is tricky. It's always there but sometimes it hides. There are days, no more like hours where I feel like I will be able to get through this time. That I will be able to be the mom I was, I will be present and I will not cry from just thinking about my mom. Then there are the times when I can't breath. Where I can't believe that she is not here. I still desperately need my mom. Trying to cope without her here is incredibly difficult. I am finding however, that I am finding the confidence in myself to figure out life. I am relying more on my own thoughts and actions to get me through this phase with Lucy in the hospital. She used to be the one that would hold me up. I suppose everyone in life has to come to a point where they trust themselves and the decisions that they make are right.

magical

Today after waiting for 18 days I was able to hold my sweet girl. It was magical, amazing, unbelievable, beautiful. I am blessed. It was only for 5 minutes, but it was 5 minutes of heaven. I can't wait for the next time. Lucy is doing well with her feedings. She is however having a lot of trouble breathing. Lots of apnea spells. It is scary to Mike and I but the nurses assure us that this is all typical. For now I am floating on clouds.