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.