Two months ago...

Two months ago we stepped into a hospital with her blanket, my purse and a bottle of water. We had no idea that our journey home would include three different hospitals along with countless caring nurses and a handful of incredible doctors. Even more, we had no idea that our community could rally behind a family so strongly and that the online community could get people from the west coast to the east coast praying for her complete healing. To sum it all up, God is good! She is completely healed. And because of her fighting strength and the grace of God our family is even stronger.



http://www5.snapfish.com/snapfish/mmsplay/slideShowOid=1398603008/ownerid=22384841/controllerType=mms/preview=true/

Copy and paste the link above into a new browser page to see a glimpse of Harper's journey. You may want to grab a tissue, I'm just sayin'. Please let me know if you have problems viewing the snapshow and I'll try to send it to you directly.

Again

It has been a very long day. Again.

Nick and my mom were both here last night and I was disillusioned in thinking that their presence would equate sleep for me. I had big plans of a dark, cold hotel room where I would sleep deeply with Nick by my side knowing Harper was being cared for by my mom. She wasn't having it. Fit throwing seems to be her only means of controlling anything right now in an environment that is out of control by all of us. It was like an F4 on the Fit Scale. My insides shattered but I held firm to the voice inside of me that said, "You need some rest. Go. She will be fine." Then she clung to me in a starfish grip, wailing, "Mama don't go. My heart will be broken if you go. I need you here with me."

It was a long night on the blow up mattress. When Nick got up to comfort her each time a nurse came in to check her vitals, I would sink down a few inches only to pop up again when he returned. I cried for over an hour because each time my eyes closed I would see Baylor's sweet eyes looking up at me. I was a pathetic, blubbering, snotty mess until I somehow exhausted myself into sleep.

This morning was our first attempt at oral antibiotics. We bribed, coached, and encouraged for over an hour before we ordered another iv bag. She just couldn't do it and my heart broke yet again after she apologized for throwing up the drug chased with Sprite. Enough.

Blah,blah,blah... it was a rough afternoon too but I just want to try to forget it.

Good news! Her inflammatory markers are down and she has been fever free for 24 hours. The plan was to send her home with oral antibiotics, but we will just deal with the pic line for a couple more weeks. Sniff, sniff...beach trip will have to be rescheduled. Oh well. We are going home tomorrow! Again. Home! HOME! Again I will get to reunite with my little one. Again I will be peppered with her kisses and get all gooey inside when she hugs her big sissy. Anticipation overflows onto the keyboard.

I could write so much more about what I can't wait to get back to, but I've got a sparkly manicure and Justin Beaver waiting on me...."You smile, I smile,"... again.

found it

Day 36:

My Dearest Kitty, (That is what Anne Frank called her diary)

Long days of waiting produce answers, right? Early this morning our resident doctor asked us to keep Harper off of food and drinks until after the scan. I rocked my starving baby all morning hoping that the rhythmic motion would lull her to sleep and keep hunger away. Her bony hips and bottom dug into my legs while I cradled her thin shoulders close to my mama bosom. Almost every time that a sigh of relaxation escaped her sweet lips, the door would creak open and a nurse, doctor or consult would come in for something. I finally asked the nurse to place a sign on the door asking people to knock and wait until we stepped out of the room. Of course, about that time Nick went to grab a snack and they had to come into the room anyway. Mama bear tried.

The cat scan and pic line went well. I found her in the recovery area happily sucking down a purple Popsicle. When the baby next to us began to wail Harper looked at me with big eyes, "I think we need to pray for that baby." I kissed her sweet forehead, glowing.

Finally, after a long, gloomy day our new doctor knocked on the door. He is brilliant and co-wrote the chapter in the textbook about pediatric infectious disease. After examining the cat scan images he was able to identify an area about the size of a kitchen sponge, or deck of cards, lingering in the bottom of her lungs. It is like a big scab in her pleural sack, or lung sack, with some icky areas within. The surgery team will re-examine the images with his recommendation to proceed with surgery to remove the infection. They will make the call, but I am sure his advice carries a lot of weight. We don't know for sure right now, but we feel like they will do surgery. There are two ways to do this. 1. use a computer arm with a camera or 2. open her up and go through her ribs. This should remove the lingering infection that isn't responding to antibiotics and alleviate the fever. It may also help them discover just what bacteria is causing this. I don't like either option, but I also don't like having a seriously sick child for over a month. I just want what is best for her in the long run. I want my Harper.

Please please continue to pray for wisdom and discernment for our doctors and nurses. Pray for my sweet girl. Pray for healing and a full recovery.

Wooaahho, Little Rock

"It won't hurt, I promise." If I hear those words one more time I'm going to scream! How can they promise anything at this point? How do they know what hurts and what doesn't because if they ask me...this hurts! This is hard and I wanna go HOME! That being said, home hasn't exactly worked out for us the way we thought it would so I AM glad to be here. I am grateful that we are here in good hands...not that we were in bad hands. Now we have new good hands, new minds and new equipment.

We decided to come to Arkansas Children's Hospital in Little Rock when her fever spiked to over 103 degrees yesterday and her body was covered in an irritable red rash. We could've had another xray done in Ruston, waited to consult with doctors in Ruston and Shreveport, but we decided to come here instead. Our biggest questions are, "Why isn't this going away," and "Why is she getting such a high fever on two strong antibiotics?" Of course, "What caused this?" is still lingering since we have not been able to grow or discover the source of infection.

Today was a day of waiting. After they removed her pic line last night because they feared it might be a source of infection, we waited for the lab results. We waited for the ct scan all morning before they switched it to an ultrasound instead. Then we waited for the results. Our last hospital overnighted a disc of our previous xrays and scans so the doctors can compare images of her lung. Then we waited for them to collaborate. In the middle of the waiting was the shuffling around a crowded room that we shared with another family of three. Cramped, crowded and noisy. Ideal situation for patience to grow.

The day has brought two blessings. 1. They gave us a private room since we may be here a couple more days. 2. They pretty much ruled out surgery! The remaining pleural fluid is not significant enough to attack with surgery. Instead they will monitor her fever pattern overnight and decide which antibiotics to use tomorrow. The vancomyacin and zosyn combo was not as successful as we would like.

Her spirits are high considering....well, considering this is our fourth hospital visit in a month and that she has had off and on fever since April 15. She is adamant about becoming a nurse when she gets big - a nurse that takes care of babies. She requires step by step explanations for EVERYTHING, watches EVERYTHING and hears EVERYTHING. Last night she applied the oil that dissolves the stickiness from the large, clear sticker covering the pic line. She wiped and peeled with diligence. She watched the doctor pull a tube 20cm long from the crook of her tiny arm. She didn't even flinch. She is becoming ambidextrous and understands the meaning of that big word. She also asks when her medicine will be hooked up and knows that the beeping machine signals that meds are all done. She is slowly losing her fear of needles since she watched the last two sticks and replied, "That didn't hurt," afterward. Today she "stuck" her new doll that is used for medical play and applied three stickers on its chest to search for vitals. I think she is already a pretty damn good nurse.

She is still fighting this.

As for me, I feel like a tired mama bear backed into a corner, snapping at everything around me, trying to protect my little one the only way I know how. I question everything the nurses do. As soon as they tell me something I immediately follow with, "And what is our plan to address that?" When she runs fever and it takes too long for the dang Tylenol or Motrin to be sent up from the pharmacy I stand in the doorway and stare at the nurses station until it arrives. I insist that a Child Life specialist explain everything to her and then I tell her the same thing in a better way because I am a really good teacher and I just do it better. I administer her oral medications to her because she won't cry if I do it. I still help her go potty and I feed her if she needs help. I'm a pretty damn good nurse too.

growing up

As a mama I naturally wonder about the women my girls will become. I've known since her birth that Harper was going to take the world by storm; she will be a leader, a difference maker, a dynamite stick topped with blond ringlets. Baylor will be the calm after the storm, rightfully so as the second born. Baylor will be the endearing spirit that instills confidence and joy in everyone she meets. Her teardrop eyes are wise and have the ability to burn a hole down deep and make you feel things you didn't know you could. Many times I have burrowed my face into clean little girl hair and whispered, "God's got big plans for you." I know He does.

Funny thing about God's plans, you never know what they look like until you are in the middle of them. Right now, in the middle of this storm, I wonder how He will use this event in the big picture of Harper's life, as well as my own life.

I tell my students all the time to write their own story. I tell them that they each have a story to tell, and in Dubach...trust me, they ALL have a story to tell, and the only way for their story to help others is to write it and share it. It is crazy for me to think that Harper is already working on her "survivor" story. From this point on she will immediately be able to connect with anyone going through a medical struggle. She will think compassionately when she sees a child with leg braces or an oxygen tube or an iv port. She will understand their fear of being different.

Being in the hospital for this long has forced my little girl to grow up in ways that I wasn't ready for. Now she asks Daddy to leave the room if she needs to use the potty. She makes certain that the privacy curtain is closed. She knows what it is to stop in the chapel and pray for all of the children in the hospital. She understands shift change and knows that her favorite guy nurse works during the day and remembers that the nurse that helped wash her hair for the first time works at night. She knows that a hospital play room isn't much fun without any other kids to play with. Even sick kids are more fun than no kids. She knows that if mom walks down the hall the nurse will give her the last cupcake that mom was saving until "after you eat real food." She knows that her Justin Bieber doll makes the little girl down the hall quit crying and that nurses seem to huddle near the doorway when you watch "Never Say Never", the Bieber movie. She also knows that she is sick. She knows that she is still in a hospital. She knows that people are praying for her.

I don't know what made Harper get sick. I don't know when she will be her old self again. The new self, once she is healthy, may be even better than before. What I DO know is that God has been in the middle of all of this, holding us all in His palm. This terrible sickness has brought about wonderful change in certain areas of my life and within my community (more on that later). A good friend and colleague has assured me on more than one occasion, "And we know that for those who love God all things work together for good, for those who are called according to his purpose." Romans 8:28

I don't understand everything, but I do trust. Like Harper, I'm growing up.