Taking time to Reflect...

Occasionally one has to stop, take a deep breath and reflect on life's past events.

Yesterday was the one month anniversary of Kayelyn's homecoming.I cannot believe it has already been one month. I sat in bed holding her last night just staring at her, thinking back to the day she was born. What a scary day. I was hemmorhaging, Kayelyn was in the Level 2 NICU, and my poor husband was stuck juggling both of us plus Briley who was patiently waiting to meet her new sister she heard so much about. When I finally came to enough to understand what was going on I remember a feeling of total terror in my heart. My baby, the one who grew in my belly for 9 months, the one I knew better than anyone was deathly ill and there was nothing I could do. I never even held her..... Suddenly, as if not holding her wasn't bad enough, she is getting whisked away from me, to the other side of town in a helicopter. From that point on its a complete blur. My heart is broken. I can't breath, I can't see straight. Total Panic. Eventually I cry myself to sleep and have constant nightmares - I am walking down the aisle of a church toward a tiny pink casket with pink satin lining. I wake up screaming. Nathan and the nurses are telling me it's ok, I am just dreaming. For 5 days I am stuck in Katy and she is Downtown. Nathan runs himself ragged going back and forth, back and forth- sitting by Kayelyn's bedside, sitting by my bedside.... he never tires and if he does, he doesn't show it. He is a total rock. My only strength. Briley comes to visit. She is my only source of Joy at that point. The only thing that gives me any hope. She had helped bake a cake for her sister's birthday party. We have party hats. We celebrate anyway.

Finally the day comes for me to leave the hospital. We go straight to Downtown Houston to Children's Memorial Hermann. Nathan brings a wheelchair and we head up to the 7th floor. They tried to prepare me for what I would see. They tried to tell me. Nothing prepared me.

"Sterilize your hands. Up to your elbows before entering the room" a nurse tells me.

My tiny 8lb 14oz baby has more tubes, more needles and more machines than I ever imagined possible. You can barely see her under everything. She has close to 20 IV drips. Monitors are beeping, nurses and doctors are buzzing around. They never ask me to move. They work around me and look at me with concern. My eyes & nose are swollen. I have scabs on my face from crying so hard. The doctor on call that night walks to my bedside and touches my shoulder.

"Do you have any questions I can help answer??"

"Yes, can you just please explain everything to me?"

"How much do you want to know?"

"Everything."

From that point on she begins telling me what they are doing to try and save my baby.

"This machine is an oscillator. It is different from a conventional ventilator in that it partially inflates her lungs and gives them time to rest. Infants breath 35-40 breaths per minute. This machine creates a panting motion and Kayelyn is taking 350-400 breaths per minute. She is taking 100% oxygen. We have her sedated and paralyzed to minimize stimulation. She is receiving her nutrition through these tubes in her belly button- A UVC and UAC. That means Umbilical Ventrical Catheter and Umbilical Arterial Catheter. We have two chest tubes that are inbetween the lung and the chest cavity to drain air and fluid off of the lung where it collapsed. Kayelyn has 2 pneumothoraces (Holes in her Lung), a collapsed lung, PPHN (Persistent Pulmonary Hypertension), Pneumonia, RDS, & a hole in her heart called a Patent ductus arteriosis. She is a very very sick little girl. She went without oxygen for some time. There is always a possibility of brain damage. We don't know how much"

Oh My God.... Oh My God..... Oh My God.... Why is this happening? Why me?

"Is she going to make it? How long will this take??"

"We don't know if she will make it. We can't tell you that at this point. We don't know how long it could take-- probably months. Maybe 3-6"

I can't breath again. I don't even know what to say. I am in hell.

"I don't care how long it takes as long as you can tell me she will make it."

"I can't tell you that, and if she does, we don't know how normal she will be because of possible brain damage. Do you have anymore questions?"

Between the reality of this situation, the pain from my c-section, and the sounds of the machines beeping in my ears I can't focus. Everything is spinning out of control....

From there I went into robot mode. Everything I did everyday was the same.... over and over. Get up, Pray, pump milk for my baby, bottle it every 3 hours, label it, freeze it. Pray. Call the hospital, check on Kayelyn. Take a nap. Wake up, Pump, Bottle, Label, Freeze. Call the Hospital. Pray. Try to eat something. Nathan comes home. Go to the hospital. Try to juggle Briley in the midst of it and give her a sense of normality and try to help her understand why she has this elusive baby sister that she hears about but never sees. Sit by Kayelyn's Bedside. Pray. Ask questions. Pray. Go home, Bathe Briley, put her to bed. Email and update. Pray. Pump, Bottle, Label, Freeze. Try to fall asleep. Sleep. Wake up in the middle of the night. Call the hospital. Ask questions. Pray. Pump, Bottle, Label, Freeze. Sleep. Wake up and do it all over agin. Over and over and over. Like beating your head against this huge hard brick wall that never gives way.

For a week. No Improvement. Saturday comes. We are in route to the hospital. She has almost been there a week. The phone rings.

"Kayelyn is no longer accepting the oxygen. She is crashing again. We have to put her on nitric oxide or we will lose her. We also need to talk about the possibility of ECMO"

Oh My God, Oh My God...... no no no no no............

How Nathan kept the truck on the road I am not sure, but we made it to the hospital in record time. Just in time to see them hook up 2 HUGE green tanks of gas to my baby's lungs. She now has more machines than any child in her pod.

Other parents are coming to visit their babies. They stare at us, wondering what went wrong, wanting to ask, but giving us our privacy.

So here we go again, same routine, same grind. But now, thank God, we have improvement. The doctors will not say she is ok, they will not give us a timeline. Only God knows that. They just say it will take a LONG TIME.

Over the next days she slowly responds and they begin weaning the oxygen down.... weaning the nitric, turning down the oscillator. Now when I call I get positive feedback.

June 19th. Regular day. Same routine. Same Grind. Go to visit in the evening. Oxygen is turned down- almost off. The Nitric is almost off. Jenn, her nurse smiles and says SURPRISE! She will likely move to a conventional ventilator tomorrow. That night. They moved her. They also took off the nitric. She is stable.

June 20th. Phone rings, and Dr Khan tells us she is doing great. He is surprised at how fast she responded. It's a miracle. Nathan gets off work early. We go to visit. Dr Khan tells me I can hold my baby for the first time.

From that point on it was a whirlwind. She jumped from a ventilator to CPAP, From CPAP to Nasal Cannula. From Nasal Cannula to room air. All in a matter of 3 days. Slowly the weaned her off the paralytic, and the pain meds. She opened her eyes and looked at me. Dr Khan told me she was going to be OK. He said the time it took her to heal was amazing. Nothing short of a miracle. That night I slept peacefully for the first time in weeks.

Shortly there after she moved to the level 2 NICU where she learned to eat and transition from a feeding tube in her nose to a bottle. This process was slow and grueling but we were there everyday. working with her and helping her along. My heart is healing. I am not scared anymore. Just anxious and ready to have her home. Briley asks everyday where her baby is.

July 10th. I get a call that its FINALLY time. The nightmare is over and Kayelyn is ready to join her family at home. We go the next day and Briley gets to meet her sister and we get to go home.

So in a nut shell. These are the thoughts that went through my head as I sat last night, engrossed in thought as my baby slept hard on my shoulder. I am damn lucky. God is good and he blessed us more than I ever thought possible. Kayelyn is Healthy. No brain damage. Growing like a weed. Briley is healthy and adores her baby sister.

My girls are my life. They mean everything to me. I cannot imagine how things could have turned out. Well, actually I can now. Hind sight is 20/20. It puts things in perspective and makes you realize what is really important.

Taking things for granted is no longer a habit of mine. Every moment. Every breath is something to cherish.