Keeping Our Fingers Crossed-April 30, 2011

Anna is nearly three months old and she weighs 4lbs and 7 oz. It's strange to think that she should still be in utero with a due date of May 21, 2011.  JR and I were told that we should subtract about four months from Anna when we think about her development.  Preemies do not develop at the same level as full term babies.  Anna will have many follow up appointments to check on her development in the first couple years of her life.

Anna is still improving every day and she has not had any major setbacks, only minor bumps in the road. The major focus is for her to take all of her bottles at every feeding.  She is getting close (72%), but she still likes to doze off every now and then. 

During rounding today, the Attending Physician told us that Anna's improvements are beyond what they expected.  This was great to hear especially coming from the doctor that witnessed Anna at her worst. Anna has come a long way.

I noticed that the white board on Anna's hospital wall says:  

Anna's Goals

1.  Nipple 100% of feedings
2.  Wean oxygen
3.  Go Home 

Anna has never had goal #3 before. This is both exciting and terrifying to me.

I notified my employer that I may be taking a few weeks off of work soon.  I couldn't give an exact date because Anna will decide when she is ready.  I wish I could take more time off, but it isn't very easy to do with my position at work. 

After I watch Anna for two weeks, Grandma Lynne will watch Anna for two weeks.  After Grandma Lynne's two weeks, Nana Kiki will fly in from Utah to watch Anna for seven weeks.  After Nana Kiki's seven weeks, Grandma Lynne will watch Anna for another two weeks.  After that, JR will watch Anna for eight weeks.  After JR's eight weeks, I will watch Anna for one more week. 

We are so happy for all of the help because Anna cannot go to a daycare provider for approximately six months. If she is exposed to a virus or any contagious illness, she could become seriously ill and end up in the hospital again.  We cannot risk for that to happen.

Anna has many restrictions.  JR and I were told that for a period of time, we should keep Anna away from visitors except for close family.  The only places that she should be taken to are to her doctor's appointments. Once Anna is ready to venture outside the home around October or November, it will be cold and flu season.  So, unfortunately, Anna will be confined to our home for the rest of the year and the beginning of next. 

Anna's bedroom in our home is now beginning to look like a baby's room.  Even though I ordered her bedroom set the weekend after we found out she was ours, the unassembled furniture sat in our den for two months.  I was afraid to take the furniture out of the box. Now that she is doing well, nearly all of her furniture is put together. I also washed all of her baby clothes, blankets, sheets, and bedding.  The room needs one last finishing touch…Anna. 

St. Francis Medical Center is very good about making sure that premature babies are well taken care of after they leave the hospital.  Finding a pediatrician for your baby is required before discharge and follow up appointments are scheduled by the Discharge Nurse immediately.  Anna's new Pediatrician has already been briefed on Anna's history and current condition. We have also received calls from the University of Iowa hospitals wanting to schedule follow up baby development appointments. These appointments are separate from her local appointments with her new Pediatrician. Visiting nurses are also scheduled to come to our home a few days per week for the first couple of weeks.

Not only do we need to have the professionals lined up, JR and I need to make sure that we are prepared as well.  Parents of preemies with certain illnesses are required to go through infant CPR, monitor and oxygen training before discharge. JR, Kara, Shawn, and I received training last Thursday.  Grandma Lynne and Nana Kiki are also taking infant CPR training.  Anna will come home on a pulse oximeter, an apnea monitor, and oxygen.  The nurse giving the training quizzed Shawn on some of the equipment and he knew all of the answers!  I was very impressed...mainly because I didn’t know some of them.  After the nurse completed our training, she asked if we felt comfortable with the equipment. Kara and Shawn smiled and nodded their heads, but JR and I looked at each other and there was an awkward silent moment.  Thank God we will have handbooks and access to a 24/7 helpline if we have trouble with any of the equipment.  

Not only does Anna have monitors, she has medications.  This weekend, Nurse Michelle wanted us to come in early Saturday morning so that JR and I could practice giving Anna her meds. JR and I will need to train Grandma Lynne and Nana Kiki, too.  There is so much to think about.

Right now, it is getting late and JR is rocking Anna to sleep.  In a few minutes, we will head out to the hotel for a good night’s rest.  Tomorrow morning is Sunday.  I will wake up early and take Kara and Shawn to the hotel pool for a swim. Then, we will eat some breakfast and head over to the hospital to be with Anna.  This could be our last weekend in Peoria and we are keeping our fingers crossed.   Maybe Anna will be home in time for Mother’s Day.

Baby Mine

My family of four and our luggage cram into Grandma Lynne's compact car every weekend.  To help us out, Grandma Lynne temporarily traded her car for our minivan so that we could save money on gas.  I cannot tell you how much JR and I appreciate this - We have saved so much money. The cost of filling up her tank is about $30 versus $65 for ours.  My only complaint is that it doesn't have cruise control.

I would describe myself as being somewhat of a backseat driver.  I recently scolded JR for getting pulled over by the police for speeding on the way back from Peoria. He was lucky and received a warning. Right before we were pulled over, I had been telling him over and over about watching the speedometer. I would look over and the dial would be close to 90 mph! He was driving me crazy, literally! The day after this happened, Grandma Lynne received a speeding ticket in the mail from one of those speeding cameras. Guess who was driving her car when the picture was taken? Me.

Hopefully,  I will not need to worry about speeding tickets for much longer.  We were told that Anna may be ready to come home within the next month as long as everything keeps going in the right direction.

Anna is doing great.  Right now, her goal is to take her bottles at 100%.  She still does not drink everything, so the nurses have to slowly pour the remaining formula down her feeding tube with a pump. She has a pump now because she has acid reflux. Worrying about acid reflux is a piece of cake compared to what she had been going through! 

Nurse Amy, Anna's night nurse and another one of our favorite nurses, moved Anna into an open crib (meaning no more incubator!). Moving to an open crib means that she is able to maintain her temperature consistently and that she is healthier.

Anna was also moved to a room with a window....finally!  Before, her room was dark and depressing.  The natural light will be a good thing for her and for us when we come to visit.  I am hoping the natural light will help her become active during the day and help her sleep through the night.  My fingers are crossed!

The adoption is moving along like it is supposed to.  JR and I received confirmation that the parental rights termination hearing took place.  Our adoption agency also notified us that we may be able to transfer Anna to a Level II local Iowa hospital within the next few weeks!  St. Francis is considered a Level III hospital because they specialize in the care of extremely premature babies.  In order to do the transfer, an Interstate Compact Agreement must be signed and approved between Illinois and Iowa.  If this is approved, Anna will be transferred by an ambulance.

JR and I received Anna's medical records from the adoption agency this week.  I was absolutely shocked when they were placed in my hands.  A two month old's medical records should not be such a big file.  Her file is about the size of my medical record file and I have had 30 years to work on mine.

I was thumbing through Anna's medical records the day I received them and my eyes stopped on the words "traumatic birth".  I could not believe my eyes as I read through the details.  Anna's gestation and birth were so much worse than I had originally thought. JR and I had asked about the birth on multiple occasions, but no one would tell us the details.  The nursing staff wanted so badly to tell us, but they could not disclose the information.

I am glad that I finally know the truth and that I found out while sitting in the privacy of my own home. I was able to clearly think about how Anna came to be and how her entry into this world was something you would see in a documentary. She is lucky to be alive. She is a living miracle. God put her here with our family for a reason and I am so very thankful. I plan to tell Anna about her birth some day, but she will need to be much much older before I have that conversation with her.  For now, my conversations with Anna consist of cooing and singing "Baby Mine" over and over. 

Tonight, I am sitting on my couch and thinking about the upcoming weekend.  What a perfect weekend to celebrate life. We are planning to have a nice Easter brunch buffet at Granite City in Peoria.  After brunch, we will head back to the hospital and spend the rest of the day with Anna. 

Baby mine, don't you cry
Baby mine, dry your eyes
Rest your head close to my heart
Never to part, baby of mine
Little one when you play
Don't you mind what they say
Let those eyes sparkle and shine
Never a tear, baby of mine
If they knew sweet little you
They'd end up loving you too
All those same people who scold you
What they'd give just for
The right to hold you
From your head to your toes
You're not much, goodness knows
But you're so precious to me
Cute as can be, baby of mine

~From the Disney soundtrack, Dumbo

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No More Ventilator! ~April 16, 2011

On Wednesday,  April 13, 2011, Anna moved to a lower level of oxygen support. I do not usually visit on Wednesdays, but this day was special to me. After work, I drove to Peoria so that I could hear Anna's voice for the first time. 

I had been waiting for this day. I will no longer have to sit in Anna's hospital room and listen to the sound of other babies' cries while I also listen to the sound of the ventilator pumping oxygen into her lungs. She can do it on her own now. 

Anna's cry is soft and beautiful.  I know it seems strange, but I want to hear her cry.  It is the sweetest sound.

Anna decided that she was ready to come off of the ventilator.  She pulled the tube out on her own (again).  She did so well without the tube that the doctors and nurses felt that she was ready to move to a si-pap (oxygen mask).  She was on the si-pap for only two days before moving to the next lower level of oxygen support called a cannula (tube with prongs inserted into the nostrils).

It gets better each day....


Today, Saturday, April 16, 2011, I fed Anna with a bottle for the first time. During rounding, the Attending Physician looked at Anna and said, "Let's try nippling her today".  Nurse Michelle and I looked at each other and smiled.  This was a huge step!

Anna drank from the bottle as if she had been drinking from it since she was born. I had to watch her carefully to make sure that she remembered to breathe while eating. She definitely enjoyed her first bottle feeding and so did her Mommy.

We can only feed Anna from a bottle once a day for now.  As long as her food digests properly, her bottle feedings will continue and increase in volume.  When she is not being fed from a bottle, she drinks her milk from a feeding tube that is inserted into her mouth and that goes into her stomach. 

There were other milestones today.  Kara and Shawn held their baby sister for the first time.  Anna wore her new pink headband for the occasion.  Anna smiled the entire time Kara held her. Kara is such a natural with babies and children. When Shawn held Anna, I asked him, "How do you like your baby sister?" Shawn looked up at me and said, "I love her". Kara and Shawn are such great kids and I am so very proud of them.  Anna is going to have the best big brother and big sister anyone could ever have.

Anna is also going to have the best Daddy.  I watched JR hold Anna for a little while today and thought, He finally has the little baby girl he always wanted.

Kara and Shawn are not JR's biological children, but you would never know it. JR has been a dad to Kara since she was 3 yrs old and to Shawn since he was 10 months old.  JR has been Kara and Shawn's Daddy for 9 years now.  

When JR and I started to talk about having more children, I was very reluctant.  Kara and Shawn were getting older and I was comfortable with the life that we had. JR and I struggled over this for five years. I am so glad that we decided to move forward with the adoption process.  Anna is the perfect addition to our family.

 Adoption is when a child grew in its mommy's heart instead of her tummy ~ Author Unknown

The NICU Roller Coaster -April 12, 2011

The doctors and nursing staff warned JR and I that the NICU experience would be like a roller coaster.  They weren't kidding.  The moment you think things are going to go a certain way, you get blindsided.

All of Anna's improvements and progress practically stopped on March 19th. Her health had taken about four steps backward. Her clothes were removed, we were not allowed to hold her, she was placed on a second ventilator, and her supported oxygen levels were hovering between 75%-100%. 

Today, I can relax just a little.  Within the last few days, Anna lowered her supported oxygen to 34%, the second ventilator was removed, the alarms on her monitors have been silent, she is now wearing clothes, and we can hold her again.  There has even been talk about her coming off of the ventilator within the next few days.  She would move to a lower level, non-invasive oxygen support called a sipap. Even though things are going well now, I have to be prepared for the twists and turns.

Being the adoptive parent also make things a little more difficult.  Since the adoption is not final, the adoption agency must give consent to the hospital for procedures to be completed. JR and I cannot give consent until Anna is discharged from the hospital.  Once she is discharged, our six month placement period will begin.  After the six months are complete, the adoption will be finalized.  We have a long road ahead.

I called my mom on my way home from Peoria tonight and she told me that JR and I need to make sure that we take care of ourselves too.  She was referring to JR getting sick this past weekend.  He had to go home early so that he did not risk getting Anna sick. My mom suggested that once a month, JR and I take turns visiting Anna on a weekend. I understood what she was trying to say, but I told her that we just couldn't.  Not now. I still worry that each moment I spend with Anna may be my last.  

Sometimes, it's hard to see the healthier babies come in and then leave so quickly with their parents.  We have had new "next door neighbors" at least four times since we have been in the NICU.  Even though this is sometimes tough to watch, I am happy for those families.  I have seen stressed and worried parents enter the NICU for the first time and then a few days later, they are walking down the hallway for the last time with smiles on their faces. I have watched proud dads carrying out bags and gifts and relieved moms carrying their little ones all snuggled up in a new baby carrier.  I just have to keep praying that that moment will be ours soon.

Until then, JR and I must remain strong not only for us, but for Anna. Without our friends and family, this experience would have been so much more difficult.   We have had some amazing people come forward to offer help and show support.  They make us stronger and we cannot thank them enough.