"She is not doing so well" - March 19, 2011

On Saturday, March 19th,  me, JR, and the kids drove up to Peoria.  It began as a happy day. Kara and Shawn started to talk about taking another trip to Disney World because Anna needed to have the experience that they had  had.  JR and I joined in and talked about who would sit with whom on the rides because there would now be five of us and someone would have to sit by themselves.  We compromised and said that we would take turns. We must have been talking loudly because neither JR or I heard our cell phones ring.

When we arrived at the hospital parking lot, both JR and I noticed that we had missed calls from the hospital.  The hospital rarely called us.  I had a sick feeling in my stomach. 

We rushed through the parking lot to the elevator.  When we reached the NICU, I scrubbed my hands and arms like mad as if the mandatory two minutes on the time clock would count down faster.

I rushed down the hall. I could hear alarms going off when I opened the door to Airplane. When I stepped into Anna's room, I saw that two nurses were standing at Anna's bedside.  They looked distressed. 

I knew Anna couldn't have been doing well, but in a whispery voice, all I could say was, "How is she doing?".  One of the nurses looked up at me and said, "She is not doing so well".  I was afraid, but I moved closer to Anna's incubator and saw a tiny little pink body laying on her tummy in a fetal position gasping for breath.  I looked up at her monitor and saw that she was at 100% support and was still gasping for air. It was only a few days ago that she needed only 40% support. JR and I were frantic.

The doctors and nurses were very grim about Anna's state, but they had a plan.  I did not know that there was more than one type of ventilator - a higher level of help. This ventilator pumps air into the lungs at a much gentler pressure and at a higher rate of speed.

While Anna was hooked up to this new ventilator, the doctors tested her for every type of infection.  Everything came back negative.  Strange as it may seem, we wanted them to find something. If they found something then they could treat it. All we could do was wait.

We were finally told that Anna had an infection that they had never seen before.  We were told that not only did she have this infection, but her lungs had collapsed and she had pneumonia. We were devastated.  My mind was racing. Why is this happening to her?  I had to leave the room.  I needed to do something. 

I had walked past the hospital chapel once before and remembered where it was.  When I walked in, the room was dark.  I took a seat, closed my eyes and tried to remember how to recite the Rosary. I was frustrated that I couldn't remember the beginning prayer, so I immediately started reciting the Hail Marys and Our Father. I finished, but I wasn't satisfied.

I walked to the other side of the hospital. I knew there was another chapel. I went there and found a small box for prayer requests. I wrote down my request, folded it, and stuffed the little piece of paper into the overflowing box.  I wondered how often the box was checked and when my prayer request would be answered.  I lit a candle and then sat in the room and stared at the religious statues. 

I started to think about everything...The day JR called me to tell me a baby girl was born and that she was ours... I thought about the first weekend I visited her and how I brought my laptop and ordered her entire furniture set for her room....I thought about the first time I held her.....I thought about how I had pictured the future...with her in it.

Glow Worm - March 8, 2011 - March 15, 2011

The nursing staff have been wonderful to Anna and our family.  I cannot count the times the staff, including those JR and I had never met before, told us that Anna is one of their favorites.  We even have nurses that just stop by our room to see how she is doing.  Nearly every time we walk into the room, there is a little surprise for us.  We have found all sorts of treasures: handmade Anna signs with flowers and hearts on her door, handmade note cards with Anna's footprints, model clay with her hand prints, pictures of the family with Anna, new Anna goals on the white board.  We are so very lucky to be surrounded by people who care.

The most common word I hear from the nursing staff when they describe her is "feisty".  Anna is a fighter and she is strong for all that she has been through.  Anna was born in a not so glamorous place and she has been fighting for her life ever since. 

By observing Anna, I have often thought that she doesn't act like she is sick. She is active and loves to move her head, arms and legs. It is also very common for Anna to look nonchalant during emergencies.  It is as if she doesn't understand what all of the fuss is about when she pulls out her ventilator tube or when her stats begin to drop. During those moments she calmly looks around while the nursing staff, me, and JR rush over to her. When her stats drop, I think mine do too, except that I probably look like my stats are dropping.  She is stronger than me.

The monitor that she is hooked up to is like a television screen. I focus on the three large numbers that change constantly:  heart rate, respiratory rate, and oxygen rate. Each rate is preceded by a moving squiggly line. I have sat for hours in her room just staring at that monitor.  Every 15-30 minutes or so, her alarms go off.  When I hear the ding, ding, ding, I immediately look at her oxygen rate because this is the only one of the three numbers that goes under or over her settings.  When I hear the alarm and see that her oxygen rate is high (good), I breathe a sigh of relief.  When I hear the alarm and see that her oxygen rate is low (bad), I have noticed that I hold my breath (Why I do this, I have no idea). Sometimes it takes a minute for her to go back up to the level she needs to be either by herself or with the help of the nurse adjusting the machine supported oxygen.

On Tuesday, March 8th, I walked into Anna's room for the first time that day.  I put my usual baggage down:  purse, beach bag full of books that will go unread and paperwork that will not get completed.  At the same time, I asked Nurse Michelle for an overnight update. I walked over to the incubator and in mid sentence I stopped what I was saying.  I covered my mouth with my hand and gasped, "She has clothes on!"  She had been naked and in a diaper since she was born so the nursing staff could keep an eye on her and watch for any abnormalities in body movements, coloring, etc. This was a milestone.

Anna was dressed in a little preemie outfit that was about 3 times too big for her and she was swaddled in a pink blanket and had her little knit cap on.  The only comparison I could think of was a "Glow Worm".  If you grew up in the 80's or had children in the 80's, you know what this is.

As I looked at her,  I could feel my lip quivering and my eyes begin to water.  Nurse Michelle told me not to cry because I was going to make her cry.  She told me that JR knew about this earlier that day and neither one wanted to tell me because they wanted it to be a surprise.  I was so surprised.

On Tuesday, March 15th, I was able to hold her with her clothes on while she was swaddled in her blanket.  This was the first time that I felt like I was holding a healthy baby even though she was still with all of her tubes and wires. It crossed my mind that maybe we would not be in the hospital for too much longer. She was doing so well.

Emergency Baptism - March 5, 2011

Anna was a part of our lives for less than one week when we decided to have her baptized.  We knew her condition was serious and we didn't want to take any chances.

JR and I are Catholic and we were lucky and thankful to be in a Catholic hospital, St Francis Medical Center. On a side note, Shawn's middle name is Francis, named after my father's middle name and named after Saint Francis. 

Monsignor Bliss is the residing hospital priest and he would be the one officiating Anna's baptism.  He is considered a legend according to some of the awards displayed in the hospital.

The Thursday after our first visit to see Anna, JR organized the baptism with the help of our favorite core team nurse, Michelle.  I was really proud of JR for doing this.  He called me to tell me about a dress that a women's organization made for Anna.  A wonderful organization called Threads of Love made Anna's baptismal dress.  It is a beautiful gown and bonnet with lace and satin.  You couldn't find a dress like this in any store. 

That Saturday, March 5, 2011 was her baptism.  We dressed her up in her little gown and Nurse Michelle told us that it would be okay if we opened her incubator for the ceremony.  We took lots of pictures and were able to get a beautiful picture of Anna holding on to JR's finger while she wore his wedding ring on her wrist.

We met Monsignor Bliss for the first time and we talked to him for a few minutes before the ceremony began.  Monsignor Bliss began the baptism with an opening prayer and then read Matthew 19, 13-15: 

The people brought little children to Jesus, for him to lay his hands on them and pray. The disciples scolded them, but Jesus said, 'Let the little children alone, and do not stop them from coming to me; for it is to such as these that the kingdom of Heaven belongs. Then he laid his hands on them and went on his way.

Monsignor Bliss then spoke about how we (JR and I) were doing the right thing as parents by helping her in every way we could, physically and spiritually.  The baptism was very solemn and Monsignor Bliss spoke very softly. I became emotional and I couldn't stop the tears.  I knew Anna was a blessing and that she was officially in the hands of God.  Monsignor Bliss then took a tiny shell and baptized Anna with holy water.

All of a sudden, I heard a voice singing: 

"Baby, Baby, Baby Oh! Baby, Baby, Baby Oh! I thought you would always be mine, mine"

No, it wasn't the voice of angels singing from above, it was the voice of Justin Bieber.

Note to self:  Next serious occasion, please remind 11 yr old daughter to turn off cell phone. 

I should have been embarrassed, but it was too funny.  We all laughed including Monsignor Bliss.  The funniest part was that no one mentioned Justin's name.  Monsignor Bliss was the first to say, "Justin Bieber, eh?" 

Recently, I received Anna's Baptismal Certificate in the mail and it says:

This is to certify that Anna Faith M.
Child of John M. and Lena M.
Born on the 5th day of February 2011

Was baptized on the 5th Day of March 2011

By Emergency Baptism

By Monsignor Bliss

Kangarooing

On Thursday, March 3, 2011,  it was JR's turn to visit Anna.  In the afternoon, JR called me at work from the hospital and told me that he was kangarooing.  I laughed and asked him what that meant.  He told me that the only way that we could hold Anna was by holding her against our bare chest.  She needed skin to skin contact and we could only hold her for a couple of hours. 

This special way of holding a baby is to help improve her health and development and provide a special bonding experience.  Kangaroo care supposedly originated in Columbia. Due to lack of power and reliable equipment, Kangaroo Care was found to be an inexpensive and very beneficial experience for pre-term babies.  Studies showed pre-term baby survival rates increased by 40%. 

I have to admit, I was a bit jealous to find out that JR was holding Anna.  I had assumed that Anna was too little and too sick to be held.  Not only that, she had wires and tubes sticking out of nearly every part of her.  I couldn't understand how we could hold her if there was a chance of us accidentally pulling something out!  The thought of this scared me. 

JR reassured me that everything was fine and that Nurse Michelle and Fred, the Respiratory Therapist, were there to help move the tubes and wires.  JR texted several pictures of him and Anna kangarooing.  Now all I could think about was my upcoming weekend visit and my chance to kangaroo. 

That weekend, like usual, I rushed to Anna's room after I scrubbed in.  I found nurse Michelle and immediately asked her if I could kangaroo.  She said that I could after I waited 30 minutes for Anna's food to digest.  I waited patiently (sort of) for 30 minutes.  While I waited, I talked to Michele about kangarooing and expressed my fears.  Michelle reassured me and said that Anna had been ready to kangaroo for a while and that I had nothing to worry about.  She told me that she had felt sorry for Anna because she didn't have anyone to kangaroo with like the other babies in the NICU. 

When the 30 minutes were up, Nurse Michelle brought me a hospital gown and pulled the rocking chair next to Anna's incubator.  Once I had my gown on,  I took a seat in the chair. 

I had never seen Anna outside of her incubator and without her swaddle cushion.  Nurse Michelle and Respiratory Fred unlatched the side of the incubator and quickly unhooked Anna from some of her tubing.  They slowly picked Anna and the rest of her tubes and wires up and placed her on my chest.  I knew she was tiny, but to see her out of the incubator and away from everything else that normally surrounded her put her size into perspective. Michelle and Fred worked quickly to hook Anna back up to some of the tubing.  They watched her stats for a few minutes to make sure that she was stable before they left me and Anna alone. 

I was finally holding my little girl.  I could feel her warm little body and her lungs mechanically moving. When I looked down at her, I saw that she was looking up at me.  Her little forehead was wrinkled and her eyes were straining to see who was holding her. I realized that this was her second time being held and she was now over one month old.  I remember looking down at her and thinking, How could this sweet baby girl, at no fault of her own, go so long without being held.  I am here now, Anna.  No one needs to feel sorry for you any longer. Your mommy and daddy are going to hold on to you for the rest of your life.