October 7, 2009

Lydia is 11 weeks old today. Kyle and I feel like she is a completely healthy little girl who happens to still be on oxygen because her appointment isn't for another couple of weeks. We take a deep breath and are thankful to be on the other side!



I stare, snuggle, and cherish my little sweetheart throughout the days and nights. I am in awe and wonder at the gift God has given me. I'm lost for words and deeply moved with emotions. However today I was thinking, "I bathed my first child every day, my second every two days and if I don't give Lydia a bath today it will be three days. Should I even consider a fourth?" :) It's been a very busy household. I've been blessed with some alone time with Lydia when the kids are in preschool. I am surprised at how much I've enjoyed spending more time at home and less running around. I've had to plan out my errands and go with Lydia or by myself at night. Today was shopping day with Lydia and she was great!



I was at the store today and talked with a lady. I told her my standard story to people who give that why is she on oxygen look. I said, "She's 11 weeks old and she had lung surgery at 3 weeks old." She said that all babies are miracles but some are definitely more than others. I'm still processing that. I agree that every child is a miracle. I agree that Lydia is a "miracle baby" because medically she was not supposed to live and we see that she was healed. I think that all of my babies are miracles. I also believe that Lydia has a special place in my heart because God showed his grace and gave me a different perspective and taught me deep grattitude. It sometimes makes me uncomfortable to call her my miracle baby. I don't want to come across that she is more special than others. However, her story makes me tear up thinking about it and I want to give God the glory for what He has done.

September 4, 2009

Date: Friday, September 4, 2009, 8:18 PM

Lydia came home Tuesday! She has had two home nurse appointments and a pediatrician appointment already and she is great. The home health nurse did not really know her case well. As she was listening to Lydia's lungs she asked, "Did she have part or all of her lower lobe removed?" I told her that she had all of the middle and lower lobes removed. She said that she would have never known since she sounded so clear all the way up and down the lung! The doctor said the same thing. She is on oxygen (just a whiff of air) and a monitor. We have had two unintentional tests of keeping her off oxygen (one in the doctor's officefor 15 minutes) and she appeared fine. We are learning how to keep the cords untangled and attach/reattach the cords when moving from place to place--that's been the biggest challenge. She is a wonderful baby--great disposition and sweet as can be. We will have our Children's Mercy appointment on Thursday with the surgeons and then at the Special Care Clinic to see if she will remain on oxygen full or part time. The doctors say that she may not be an Olympic athlete. Other than that, she is healthy and is expected to remain healthy. We need to be very careful with keeping hands washed and not passing her around too much during flu season. Hopefully nobody will be offended if we pass the hand sanitizer. :) Carter and Chloe are a big help and adore their babysister. We are so grateful to be home with our whole family. Lydia's life has defied all odds. God has definitely shown us mercy and love. Thank you for your prayers.

Loving you,Kyle and Melinda

August 23, 2009

Sunday, August 23, 2009 12:41:53 AM

Thank you to everyone who has prayed for our baby girl. Wow, the words 'relief and celebration' seem to sum up the past few days. Little Lydia Joy is continuing to heal from surgery. She is being weaned from her narcotics and oxygen and is eating well. Her breathing tube, chest tube, and feeding IV's have all been removed. She only has the monitors, oxygen, and peripheral IV line. She's almost cordless! Wednesday we were able to began holding her again after 13 days. Please pray that she will continue to heal and wean off of support with ease. Also that the doctors and nurses will make the right decision about when she can come home. We're excited for her to come home but sure don't want to bring her home before she's ready. I (Melinda) had a chat with Lydia last night and told her all about how many people love her and are praying for her. It was pretty much a one way conversation, but I think she'll understand when she gets to meet everyone. We both appreciate everyone's support. Email has been a blessing. We can explain facts and feelings all at once to everyone and we can read responses at our convenience. We look forward to socializing and getting back into the swing of things soon.

Love,

Kyle and Melinda

August 15, 2009

Saturday, August 15, 2009 8:08:23 PM

Lydia's surgery was successful!!! RELIEF!!! The surgeon took about 10 seconds to figure out that the scope, thoracoscopic procedure, was not going to be an option so he made an incision, thoracotomy, and removed the middle and lower lobes of her right lung. The actual surgery took 1-hour and 15-minutes. She is left with 30% of a right lung that is expanding nicely and will fill the entire right side of the chest as that lobe continues to develop. She was placed back on the high-frequency (vibrating) ventilator for one day and then back to a conventional ventilator. She has a chest tube drain to remove air and fluid from surgery. The doctors will continue weaning her from the ventilator and pain medicine to get her to breathe and eat on her own. We have about 1-2 weeks of recovery left before Lydia gets to come home.

She is our miracle baby! Little Lydia has literally gone from "almost 0%" chance of survival to "almost 100%" chance of full recovery and a normal life. We can't thank you enough for praying with us these past 22+ weeks. When we were weak, we knew that many were praying for us, and Jesus made us strong. Our Lydia really has a special place in our hearts and we are so overjoyed that she has touched the hearts of so many. We hope and pray that you all had an increase in your faith as we have. It is the hard times in life when your faith is grown. We have no clue why our faith had to be stretched like this but we are sure we will look back on this time and continue to gain more joy through the pain. God continues to be good all of the time.

We love you,
Kyle and Melinda

August 12, 2009

Date: Wednesday, August 12, 2009, 8:31 PM

LYDIA IS SCHEDULED TO GO INTO SURGERY TOMORROW AT 10:30 AM. We are grateful for all of your prayers. This is the current state of things in Lydia's life.

Her cultures came back negative for viral andbacterial infections. They put Lydia on a high-frequency ventilator which vibrates her lung to break up the mucous and keeps it inflated at a constant pressure to not let any other parts of the lung collapse. It is also gentler on the lungs and keeps the lung with the CCAM from over-inflating. It is working well and her left lung is clearing up nicely. The lack of infection, made the CCAM the sole culprit for causing the trip to the E.R.

We are excited to get the surgery done to get our little miracle home. They are going to try to get it out with a scope, thoracoscopic procedure, but if they are unable to do that they will make an incision, thoracotomy. The surgery will take a few hours since it is a small place to work making a thoracoscopic procedure longer than a thoracotomy procedure. We were prepared for an emergent surgery on day one so this is a better scenario than what we started with 22 weeks ago. God has been in control since before then and He remains in control. He brought Lydia through a birth that was not supposed to happen and He will get her through this surgery. It's been a pretty tough rollercoaster ride with good and bad news thrown at us in a short amount of time. We are overwhelmed with love from others--encouraging emails, phone calls and offers of help. Thank you!

August 8, 2009

Saturday, August 8, 2009 7:18:21 PM

Most of you might think that we are at home with Lydia. Thursday night we had to call the EMT's since she went into respiratory distress. We are now back in the NICU at Children's Mercy. We are finding out that there could be a viral infection that has caused her left (good) lung to collapse. The upper two lobes of her right lung are working fine. She is now on a high-frequency ventilator to help open up the left lung and not over inflatethe CCAM in the right lung. They are having a hard time placing a second IV and the first IV is failing. A special radiology team is coming to find a vein where they can place a second IV. God is giving us enough strength for one step at a time. He continues to give us His peace and to provide the help that we need from our friends and family.

Please pray for Lydia:
*Her left lung becomes functional again.
*An IV can be reestablished.
*Any possible infection is resolved quickly.

Please pray for our family:
*Carter and Chloe as they are away from Mom and Dad a lot.
*Our rest and well-being.
*Kyle's job--lack of paid leave

August 7, 2009

Friday, August 7, 2009, 2:20 AM

I'm on here for one minute but we had to take an ambulance take Lydia back to the ER tonight. She is readmitted to the NICU. She's intubated and getting all kinds of tests after the scariest moments of our lives. She's stable and in God's hands.

Love you all,
Melinda