Adoption and a Scheduled Open Heart Surgery

It has been one year since JR and I began the adoption process. Who would have thought that our lives would have changed so much within that time? Everyday has been a blessing even with the challenges that we have faced.

We had our last home visit with the adoption agency last Thursday. During the meeting, our adoption portfolio (scrapbook) was returned to us. We had not seen our portfolio since the day we handed it to our social worker. The day we handed it to her, I remember asking if our portfolio was attractive enough, if we had enough pictures of our family, and if we had written enough information. Since there would be other portfolios for a birth mother to choose from, I was worried that ours would be tossed aside. Little did I know that our portfolio was just right.

Time goes by so fast. It has been eight months since we first saw Anna and nearly five months since Anna came home. I remember when we first saw Anna in the hospital. We were so happy, taking pictures with our cell phones and texting our family members. That first night, I honestly thought that she was going to be home in a matter of weeks. I was so naive.

Anna was in the hospital from birth for nearly 4 months. When Anna was strong enough to come home, she came home with two monitors, oxygen, and a handful of medications. The first several weeks were filled with loud monitor beeps, endless phone calls with doctors and nurses, many medical appointments and sleepless nights. Now that I think about it....not much has changed since that time!

When we brought Anna home, we thought that she would have been weaned off of her oxygen and that she would be eating like a "normal" baby towards the end of the year. Instead, her oxygen levels have gotten worse and it is a struggle to feed her everyday. She is nearly 9 months old/5 months adjusted and she only weighs 11 lbs.

During the month of August, Anna spent one week in the Iowa City Children's hospital because she was not eating well or gaining weight. Every test was conducted and all tests came back negative. Every doctor had an opinion, but no one had the answer. JR and I left the hospital after that week frustrated with only a feeding tube to help Anna grow.

After two months with little progress, it was decided that Anna would need to have open heart surgery. This surgery will prevent the blood from pumping through the hole in her heart and into her lungs. At first the surgery was going to be scheduled within several months, then it was decided that Anna would not be able to wait any longer and the surgery was scheduled for November 2nd, a little more than one week away.

The thought of doctors performing surgery on one of the major organs necessary to keep her alive scares me. I have to keep reminding myself that it will help her come off the oxygen more quickly and will also help her eating issues. Anna will be in recovery for 4-6 weeks after her surgery.

Anna has been our daughter since the day she was born, but on October 27, 2011, JR and I will have the paperwork that will make it official. Originally, our court date for the adoption finalization was set for November 16th, but the judge waved the required 180 day waiting period so that we could officially be a family before Anna's heart surgery.

Besides the obvious cannula and oxygen tank, you would never know that Anna was ill. She is a beautiful little baby. She is generally happy, but has her grouchy moments. Anna is smart and pays attention to her surroundings. She giggles and babbles every now and then. My favorite Anna moment is when she is sitting on my lap in the rocking chair and looks up at me as if to make sure that I am still there. When she realizes that I am, she smiles.

Most strangers that see Anna assume that she is a newborn, but others see Anna's cannula and know immediately that she is a preemie. JR and I have told Anna's story many times. You would think that we would get tired of telling the same story over and over, but we don't. It's amazing how many people have a preemie story to share. JR and I have had so many great conversations with people we never would have spoken to if is wasn't for Anna.

Anna has made JR and I better parents. She has made us better people. I have learned to be more patient and I have learned to open my heart and mind.

Anna is Coming Home - May 15, 2011

JR, the kids, and I arrived at the hospital at 9am Saturday morning. We knew that it would take a few hours before Anna would be discharged.  A photographer came into Anna's room to take some pictures while we waited.  The photographer took a beautiful picture of Anna smiling and wearing a big pink headband and a diaper.  Hopefully, I will be able to post that picture in a few days.

After the pictures were taken, the doctors and nurses came into Anna's room for her final rounding session. The conversation was upbeat and happy. We talked about Anna's progress and how there were times when they thought Anna would never come out of the hospital. One of the nurses told us that Anna was a miracle. The Attending Physician discharged Anna over the computer and Nurse Michelle told us that we needed to hook Anna up to her home monitors because it was time to go. Everyone congratulated us and then left the room. 

When the door to Anna's room closed, there was silence.  JR and I looked at each other because we had never hooked her up to the monitors before.  I suppose it would have helped if JR and I read the monitor manual before we came to the hospital.  I looked at JR and said, "Did you bring the monitor handbook?"  He looked at me and said, "No, I thought you did."  Great. Now what do we do.  What if the hospital won't let us go home because we don't know how to work the monitors.  I heard JR mumbling, "No doctor, we can't leave yet.  Dumb and Dumber can't figure out how to work the monitors." I laughed.  It took us awhile, but JR and I fumbled through it somehow.  We managed to figure out how to turn the machines on and we placed the sensors in the right places without alarms going off.  Whew.

It was time to say our final goodbyes.  We had been saying goodbye to the nursing staff and doctors for the past few days. Many of the hospital staff asked in disbelief, "Is Anna really leaving?" It was hard not to get a little teary eyed.  After all, they were part of our family for the past several months.  Anna is with us because of the loving care that she received from them.  JR and I cannot thank them enough.

Before we left Airplane, we said our final goodbye to Nurse Michelle.  Anna will miss Nurse Michelle the most.  She was a second mommy to Anna. 

It was surreal to finally take the "proud parent walk" down the hallway and out of the NICU with Anna. However,  the walk was not as smooth as I had pictured it. We basically formed a conga line and were connected by wires.  A nurse was at the front of the line holding Anna in her baby carrier,  I was walking behind the nurse carrying the oxygen tank, JR was walking behind me carrying the pulse oximeter and apnea monitor, and Kara and Shawn were behind JR carrying the rest of the bags.  We shuffled through the hall, down the elevator, and to the minivan.

We loaded into the minivan carefully making sure that we did not disconnect any of the wires.  Once we were settled in, we drove out of the parking ramp and into the rain. We left the place that we had called our second home for the past several months.  I looked at the hospital as we drove away.  This was the only time I was happy to see the OSF Saint Francis Medical Center sign in my rear view mirror.

The ride back home was quiet.  It must have been registering in our minds that we were coming home with a newborn with special needs.  We haven't had a baby in the house for nearly ten years.....Goodbye sleep.  It's amazing to think back on our experience.  My thoughts were on overload. Finally, she was coming home.

On February 5, 2011, Anna flew in to the Peoria NICU by helicopter weighing 1 lb and 7.5oz and she was clinging to life.  Exactly 100 days later on May 15, 2011, Anna left the NICU by minivan weighing 5 lbs 4oz and she was happy and content. 

Surgery - May 6, 2011

JR and I put a stop to the Iowa hospital transfer because we were pretty sure that Anna was going to come home this week. We made plans to take time off work and we made arrangements for her homecoming.  Anna was at 95% with her feedings and she passed her car seat test (she had to sit in her car seat for 1 1/2 hours without setting off her alarms). 

Anna was so close to coming home, but our plans changed suddenly. 

Earlier this week, one of the nurses noticed a bulge in the side of Anna's groin.  An ultrasound was taken and they found that Anna had a hernia and one of her ovaries was in a place that it should not be.  Her surgery was scheduled for this morning at 11am. 

JR and I both took the day off and drove to Peoria.  Kara and Shawn went to school and then were going camping with relatives for most of the weekend.  They would be coming back Sunday for Mother's Day.

When JR and I arrived in Airplane, the nurse yelled, "The parents are here! Anna's surgery was moved up, but I told the surgeons that we could not bring Anna down to the operating room until you guys arrived.  While we get her mobile incubator ready, why don't you hold her for a while before we walk down to pre-op."  I looked at Anna.  She was bundled up like a little burrito and had an IV in her head.  She was sucking on her pacifier furiously.  I took Anna out and held and kissed her until it was time to leave the comfort of her NICU room. 

They placed Anna in a small incubator and we took the elevator down to pre-op.  We walked into a hallway and I immediately noticed all of the child themed pictures on the wall and toys scattered in the hallway.  This is where children wait for their turn in surgery. I felt a little sick. We were placed in a private room until the surgeons were ready for us. Anna's last feeding was late Thursday night and she was hungry and mad. I took her out of the incubator and rocked her so that she remained calm. 

As I was rocking Anna, I heard a loud noise coming towards our room.  A little boy, about 4 years old, was riding a motorized toy car.  He was in matching blue shorts and top (hospital garb) and stopped in front of our doorway.  He looked at JR and I and said, "Hi!" Then he looked at Anna and said, "Baby!"  He was so cute and energetic.  I wondered how this little boy who looked so healthy could be getting ready for surgery.  Within seconds, the little boy's dad herded him away from our doorway. 

I was still looking out the door when I noticed a little girl, about 8 years old, walking by in her matching yellow pants and top.  She was wearing a surgical cap and it didn't look as if she had any hair.  She was fidgeting with a stuffed bunny. Her mom was walking next to her and I could hear her mom talking.  I could tell that her mom was trying to be optimistic and cheery to make her daughter feel better. The little girl looked over her shoulder as she passed by and smiled at Anna.  

After one hour of waiting in pre-op, the anesthesiologist walked into the room.  We had never met her before.  She said, "Are you the adoptive parents? We hear that you are in love with this little girl."  JR and I looked up and said, "Yes" in unison.

A few moments later, the surgeon walked into the room and said that they were ready to take her to the OR.  JR and I kissed Anna on her forehead and we put her back in her mobile incubator.  We followed Anna's incubator out the door and went into the waiting room. 

JR and I had never experienced a hospital waiting room quite like this before.  It was almost as if we were waiting for a table at a restaurant on a busy Friday night.  We went up to the desk, gave them our name, and we were handed a round buzzer that was supposed to light up when the surgeon was ready to talk to us after the surgery was complete.  The clerk behind the desk pointed to the large TV screens in the room.  I looked around and noticed that people were clustered around each one.  The screens had numbers highlighted in various colors. Each number stood for a person and the color stood for the status of the surgery (similar to a flight status in an airport). The clerk handed us a guide that described what each color meant:

Pink =  Waiting room

Yellow = Before surgery /procedure

Green = Operating room

Blue  = Recovery room

Purple = 2nd stage recovery room.

JR and I took a seat near a screen and searched for Anna's number, 87523.  I found her number on the screen and noticed that it was highlighted in yellow.  They must be prepping her for surgery.  I looked up again a few minutes later.  Still prepping.  To keep myself from becoming obsessed with the screen, I decided to do some work and eat the gummy bears that JR brought me from the snack bar upstairs. In between sending work emails and stuffing gummy bears in my mouth, I would look up at the screen to check her status.  Still prepping.  When I looked down for what must have been the seventh time, JR said, "She's in surgery now".  I looked up to confirm the Green status - 87523 and then waited. 

Waiting while your baby is in surgery is awful. All sorts of things crossed my mind.  I went from thinking the absolute worst to coming to my senses and realizing that she was in good hands and that the surgery was considered routine.  What worried me most was her breathing and that she was placed back on to the ventilator. We just got rid of that thing and now here it is again.  I worried that she would not be able to come off of the ventilator and that she would be back to square one again.

The surgery did not last as long as expected.  The surgeon found JR and I in the waiting room and said, "The surgery went well.  She had a hernia in both sides of her groin and her ovary was not in the right spot."  He told us that everything had been fixed and that they did not have any concerns. What a relief.

JR and I walked back up to the NICU and waited for Anna to arrive. I stood in Anna's doorway and watched her come into Airplane with a team of people.  There were about five people scurrying around to get her settled in.  Anna was still out from the anesthesia.  She looked ghostly pale and it was a little frightening. We were told that this was normal and that she would regain her color when she begins to wake up. We were also told that it could be a day or two before she is taken off of the ventilator.

As JR and I waited out in the hallway while Anna was being settled in, one of Anna's neonatologist from a month ago (neonatologists rotate every month) came up to us and said that she saw Anna being prepped for surgery earlier in the day and became concerned.  She had to find out what was going on and did some research to make sure that she was okay.  She told us that she does not normally do that, but Anna was special to her. 

It has now been seven hours since her surgery and she is doing well and resting peacefully for the most part.  Every now and then she will wake up and cry and try to pull at her ventilator tube.  Today, I noticed that for the first time, Anna has tears.  I know how she feels.  I want that thing out just as much as she does.

All JR and I can do now is wait and try and comfort her. Maybe she will be off of the ventilator tomorrow and begin eating again.  Maybe JR and I can plan for her to come home next week.....maybe. 

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. 

"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.

The Call - February 28, 2011

I will never forget the day JR called me at work to tell me the news.  It was February 28, 2011 at about 2pm.  I was sitting in my office  at work when my phone rang.  JR sounded frantic.  All I heard was "There is a baby girl...Nancy (social worker) called me...call her as soon as possible....she will tell you the details."  All I could say was "What?!"  I was confused and excited.  What just happened and is this real? We weren't supposed to get a call for at least one year, right?  Doesn't the adoption process take a long time? Was I ready for this?

I called Nancy right away.  Nancy told me that a baby girl was born and her birth mother picked us on Valentine's Day.  Immediately, I thought Valentine's Day is a day of love and this was meant to be.  She then sounded a little hesitant and told me that the baby girl weighed a little over 1 lb.  She was life-flighted to Peoria hospital after being born locally. She asked me if I needed to talk to JR before we decided to take her.  I said I didn't think so. I remember hearing the excitement in JR's voice and knew that he wanted her as much as I did...no matter what health problems she had. Nancy told me that her birth mother named her Juliana.

I called JR back and we both agreed to leave work early and drive to Peoria.  Instead of leaving work immediately, I walked around and told everyone on my side of the building the big news.  Everyone was congratulating me and was very happy for me.  I burst into my manager's office, he happened to be in town that week, and asked him If I could leave a little early today because I was a new mommy. He congratulated me and I left. On my way home, I called my mom, my dad, my brother, my former boss, and two of my closest friends and told them the news.

JR later told me that he was walking around his work in a daze not knowing what to do until he realized he needed to get home.

JR and I met each other at home and picked up Kara and Shawn from the daycare. JR called Grandma Lynne and told her the news.  She started crying and asked JR if she could come with us.  We waited for about 45 minutes for Grandma Lynne to arrive from Iowa City.  While we waited, JR and I kept looking at each other and smiling.  We were very happy.

Grandma Lynne later told JR and I that she called her parents (JR's grandparents) right away and told them the news.  Lynne is an animal lover and dog rescuer.  She has six dogs.  She says that she really only has four because three of her dogs are chihuahua's and they really only equal one dog.  Anyway, her dogs are like her children.  She told us that when she called her parents to tell them the news, she was so excited and shouted into the phone, "We have a baby, we have a baby!".  Great Grandma Shirley responded by yelling over to Great Grandpa Bob (her husband), "Bob!!! Lynne got another dog!"  Lynne then started shouting, "No, no!  Not a dog!  A baby, A baby!" 

Once Grandma Lynne arrived, we crowded into the minivan and headed out to Peoria.  I don't know why, but that drive was the longest out of all of the drives we have made out there. On the way there, we got on the subject of names. It is a bit of a coincidence that JR and I had already decided on the name Anna before we even knew about her and her birth mother named her Juliana.

We already knew her first name, but what about her middle name?  Kara and Shawn both have Catholic middle names and I thought that this is what I wanted for Anna, but we couldn't come up with one.  Everyone in the minivan was saying Anna's name and random middle names out loud.  In unison, there were "nahs" and "hmmmms".  Nothing sounded right.  I finally said "Anna Faith" and there was silence.  I think we all knew that that would be her name.  We named her before we saw her.  In our hearts we just knew that Anna Faith was perfect.

A small ornament hangs from Anna's incubator. The ornament is a beautiful Angel holding a cross with the words "Faith brings miracles" on her dress.

Our Temporary Home

Every time I see the OSF St. Francis Medical Center approaching, I feel a rush of excitement. I know my daughter is waiting for me. I am slightly irritated that I can't drive fast enough and that I can't control the traffic lights so that they turn green when I rush towards the hospital in my mother-in-law's compact car. 

It has been the same routine every Tuesday, Thursday, Saturday, and Sunday since Monday, February 28th. We drive 1 hour and 45 minutes to and from Peoria, IL (3 1/2 hour round trip).  The drive always feels long and there aren't too many things out my window to draw my interest: cows, barns, silos, and a few rest stops.  On Tuesdays, I leave work early and make the trip by myself.  On Thursdays, JR makes the trip by himself or with Grandma Lynne (my mother-in-law).  On the weekends, the entire family goes and stays Saturday night at the hotel.  We drive home on Sunday afternoon.  Thank goodness for our friends and family who watch our house and our dogs while we are gone.

Anytime you leave the hospital building and come back to the NICU, our temporary home, you must scrub in for two minutes. The hospital provides a disposable sponge-like apparatus and non-bacterial soap.  There is a timer on the wall to help you keep track of your scrub time. I watch the clock tick down to one minute and I switch my scrubbing to my other arm and hand until I hear the high beeping sound telling me that I am finished.  My arms are a little rashy from one month of scrubbing.

I think JR knows that I race everyone to the room.  I don't make it known, but I say very little once we badge into the NICU.  I scrub and then I run down the hall by myself and look for the blue airplane sign.  That's my daughter's wing, "Airplane".  This is sort of ironic since I am terrified of airplanes. 

I walked into her room and found her moving around and looking irritable.  I quickly opened her incubator doors and put my hand on her tummy and held her arms down gently so that she could not pull at her tube. I could feel her whole body vibrate.  The ventilator is pumping 360 breaths per minute into her tiny, fragile lungs.  I always talk to her in a higher than normal pitch and I know she recognizes my voice.  After about one minute, she calmed down and fell asleep.    

Today, the nurse, who is not on Anna's core team (but I think I like her and might ask her), told us that Anna has been stable and had a good night.  By "good"  she means that Anna did not try to pull out her ventilator tube, like she had done twice before.  By  "stable"  she means that not much has changed; Her oxygen levels didn't drop dramatically, she was maintaining her temperature, and tolerating her feedings. Stable is not really the right word for her.  Anna is in critical condition. 

Anna's lungs are extremely premature and she cannot breathe on her own.  She has not only one, but two ventilators breathing for her. She is also hooked up to Nitric Oxide (used for respiratory failure in premature babies), a heart monitor, a respiratory monitor, an oxygen monitor, a feeding tube, and an IV that pumps Fentanyl to help relieve her pain. I winced when I noticed that the IV was in her head today.

Last Thursday, Anna's PICC line was removed from her hand.  JR told me that while he and Grandma Lynne were at the hospital, they noticed Anna's hand and parts of her body looked like the Michelin Man.  They notified the nurse who notified the head of the nursing staff, and they removed her PICC line immediately, because she was having a reaction to it. PICC lines are used for prolonged intravenous access.  This also prevents Anna from being poked multiple times throughout the day.  Now with the PICC line out, we have to witness the nurses try endlessly to find good veins in Anna's tiny body to use.  Sometimes I have to leave the room.

The doctors arrived for their daily rounding around 12:30pm.  The tiny room gets smaller during rounding.  Today, there were four extra bodies crowded around Anna.  The resident doctor called out some stats to the attending physician.  The conversation went something like this,  "75% oxygen maintaining low 90's high 80's range; another chest x-ray was conducted yesterday and still shows signs of chronic lung disease; she should be rotated  to help keep her lungs inflated.  Let's stop fentanyl and start methadone and move from 27 cal to 30 cal formula."  The attending physician looked at me and said, "She is a good pooper."  Everyone in the room laughed a little.  She asked me if we had any questions and I asked what methadone is.  She told me that Methadone is an opiate used to wean babies off of fentanyl. Once the methadone is in place and runs for certain period of time, her IV will be taken out.

The attending then asked me if anyone had talked to me about what to expect with extremely premature babies and then asked me what I was told during my pregnancy.  The resident doctor cut her off and said, "She is the Adoptive Mother".  The attending looked at me and asked me what we were told and if I was ready for all of this.  I told her that I didn't think anyone would really be ready to handle this.  She then asked me how we got involved.  JR jumped in and said that we were chosen.  The birth mother chose us through our adoption profile that we created (the scrapbook that JR and I spent 16 hours making while sitting at our dining room table late last fall). The birth mother received our profile book on February 11th and chose us on February 14th, Valentine's Day. I told the Attending that we got the call on February 28th from our social worker. All we were told was that a baby was born and that she was very premature and weighed a little over 1lb. We were on the healthy baby list, but when we got the call, I immediately told our social worker that we wanted her.  She asked me if I was sure and she sounded very hesitant. In the back of my head, I knew that she was very ill, but how could I say no?  Who would I be if I were to say, "No, I think I'll pass and wait for a healthy one to come along."  Who would I be?! How could I live with myself for even having this thought? She is a baby...a human being and she needed me.  She needed a family.  She didn't have anyone visit her for nearly one month.  She had no family to love her. Our social worker told me that she wasn't going to tell us about her until she was "out of the woods", but the agency changed their mind.

The attending told us that she would be back this afternoon to have a long discussion with us about neurological issues.  She talked to us a little more and then said that Anna would most likely go home on oxygen if she survives.  If she survives...those words are now going to haunt me.  I immediately started tearing up and couldn't quite get the next sentence to come out of my mouth.  All I could say was, "Okay, thank you". A nurse brought me a box of tissues.

The attending physician came back around to our room this afternoon like she had said.  We went into a separate meeting room around the corner from Anna and had a seat at a small table with the doctor and nurse.  She told us more than we were ever told before.  She realized that no one actually sat down to give us details and that we needed to know what was going on with our baby girl. 

She pulled out a chart and apologized that the chart dates were 2004-2005, but she said the charts are pretty accurate.  She pointed to Anna's gestational age at birth (24 and 5/7 weeks).  Babies born at this age have a 74% chance of survival.  The statistics were actually better than I originally thought.  I was actually okay with this because I thought they were going to be much lower.  She flipped the chart and showed us that babies born at this age will have a 41% chance of severe neurological disorder.  This news was disheartening, but I don't want to think about that now.  The current issue for her is her lungs.

The Attending then pulled up Anna's head ultrasound. She said that Anna had some hemorrhaging at birth, but it was not something to be concerned about.  If a baby was going to have a hemorrhage, then they would want this type. Obviously, this is not wonderful news, but it made me feel better.  One major body function down, a couple more to go. 

She pulled up her heart charts.  Anna has a VSD (Ventrical Septal Defect), which is a small hole between her two bottom chambers, but the doctor was not too concerned and felt that this would correct on its own.  Anna also has an ASD (Atrial Septal Defect) which is a bit large, but will hopefully correct itself as well.  The doctor said that this is not too concerning right now, but may become serious when she becomes a teenager.  This was not good news, but there is hope that her heart will heal and close on its own. 

The next discussion was Anna's digestive system.  The Attending looked at us and said, I really don't think we need to go here.  We all know Anna digests her food like a champ.

The doctor then starting to tell us about her eyes.  Anna's eyes were diagnosed as being premature.  Apparently this is not a bad thing right now.  She will need to have her eyes examined again to make sure that they are developing correctly.  The discussion then changed to Anna's lungs.

The Attending said that this is the majority of her trouble. JR and I know that her lungs are not doing well and so we expected bad news. The doctor told us what we already knew.  Anna has Chronic Lung Disease and the very thing that is keeping her alive is also hurting her.  We need to try and wean her off of the ventilator.  The doctor spoke to us about steroids and how this may help Anna heal faster.  Today, she will be taking a form of steroid that will be inhaled and another form of steroid will be used next week if things don't improve.  The side effects could be an increased risk of neurological disorder, high blood pressure, and high glucose. 

After our meeting with the doctor, I felt better. I felt better because I was finally informed. No other doctor took the time out to actually give us details and spend time with us.  Even though we did not receive all good news, I now have an idea of what to expect.  JR was not sure about the Attending.  The Attending tends to look at me when she talks and doesn't make much eye contact with him.  JR also likes "fluff".  He felt that at times, she was too direct and not as sympathetic as she could have been.  I don't want any "fluff".  I want to know exactly what is going on so that I am not completely surprised or shocked when something does not go the direction I thought it would be going.

So, I left happy and I think JR was okay with it.  We took Kara and went to Olive Garden.  I ate too much as usual.  After Olive Garden, we went to Burlington Coat Factory and I bought a baby hamper for Anna's room.  When we got back from lunch, there was some commotion down the hallway.

JR and I can see which baby rooms are having serious issues. At the top of our monitor there are room numbers that sometimes blink with different colors.  I have seen blue, red, white, and yellow.  I haven't figured out what all of the colors mean, but I know red is not good.  Today, JR and I saw the red light blinking on room 314 and we could hear the alarm sounding down the hall.  It was blinking red for a long time and then went white and changed back to red.  Then we saw a priest in a long black robe appear and then disappear down the hallway.  Something was wrong and I couldn't help but say a prayer for the baby in room 314.  I saw who must have been the baby's relative very upset.  She ran out of the wing and said she couldn't take it.  I knew that being in the hospital for this long, we would see things that we wish we would never have to see.  We were told that there are babies that "code" at least once per week here.  I hope and pray that we never have to experience what just happened down the hall.