January 12, 2010

Oh, how time flies by when you're happy and having fun. Things are smooth sailing. I feel guilty about not posting our thanksgiving and praises in the past few months; however, we've really been cherishing the moments. We feel that we are "settled." Carter and Chloe are adjusted to adding their sister to the family. We think that we are in a good routine and rhythm of life. Lydia is here on my lap as I type. She's growing bigger, stronger, and more playful than ever.

I think we're still in the "just live and listen to God" stage. Perhaps I could have poured over more Scripture, books and aricles about miracles and lessons about what we just went through. We've learned a lot but I crave more insight. We still feel like we're in the early steps of processing 2009. So much happened with Kyle's dad passing away, high risk, pregnancy, hospital, and Kyle's car crash. Even during it all, we had the true peace of God and could see Him working each day.

November 2, 2009

Lydia is so interactive now! She is cooing and making all kinds of sounds with her mouth. Her favorite thing to do is to get up on my shins while I'm on my back on the floor and I bounce her gently while smiling and talking with each other. She grins from ear to ear and laughs. It brings such joy to me to see her so alert and happy. She is able to track objects with her eyes in all directions and can definitely hear well. Tummy time is not her favorite but she will do it with fun toys or a mirror in front of her. She loves the fish tank so she sometimes lays on our chest and watches the fish that way. Lydia really prefers to sit up with our help and she likes to now face out when we hold her. She is getting so big! We are wondering if she will last much longer in her car seat. She's only 3 months! All of the developmental stuff that we sometimes take for granted just seems like such a huge accomplishment for her. We are thrilled for her physical accomplishments, but more than that, we are estatic about her social interactions and sweet spirit. Thank you, Lord!

October 22, 2009

Below is an article written for our women's ministry newsletter in June 2009.

The Strength Inside of Me

The past ten weeks in the Sims’ household have been unpredictable and emotional. It is difficult to know whether to write in the past or the present tense. God is still fresh at work in our family circumstances but God has made it clear that we are supposed to be sharing this story for His glory. The strength inside of me is only strong when I allow Christ to shape my attitude.

Ten weeks ago Kyle, my husband, and I went to my routine 20 week prenatal sonogram. We were excited to find out if we were having a boy or a girl. We did not expect to find out that our baby girl was in great danger and we would have to wait the weekend to find out what was wrong. We knew that God had blessed us with our third child and we had already placed her in His hands. Now it was time to trust Him in a whole new way. Proverbs 16:9 says, “In his heart a man plans his course but the Lord determines his steps.”

The diagnosis is that she has CCAM with hydrops fetalis, which means that our baby girl has a mass on her lung taking up two-thirds of her chest cavity, pushing her heart aside, and causing swelling all over her body. Her prognosis is that she has a 5-10% chance of survival. It is an extremely rare and random condition and there is nothing I can do to help. Surgery after birth is the only treatment.

It is a struggle some days to keep from having an attitude of worry or slip into the swirling questions of “what if’s.” 2 Corinthians 10:5 speaks of “taking captive every thought to make it obedient to Christ.” My three year old daughter quotes Psalm 56:3, “When I am afraid, I will trust in you (God).” My four year old son quoted the words from the movie Facing the Giants when talking about the will of God. He said, “If we win, we’ll praise Him. If we lose, we’ll praise Him.” They are learning life lessons along with us.

After visiting the Neonatal Intensive Care Unit at Children’s Mercy and talking with the surgeons, I finally hit an emotional low. I knew that it was okay to grieve and that I also wasn’t in despair. “Consider it all joy, my brethren, when you encounter various trials, knowing that the testing of your faith produces endurance. And let endurance have its perfect result, so that you may be perfect and complete, lacking in nothing.” James 1:2-4. We know that this story is not finished yet.

After accepting and understanding our baby’s condition, we had another adjustment in the family. Kyle’s parents came to live with us in our basement as his father is on hospice. It is the best place for them and our family right now.

We have a lot of uncertainty in our life and we have to rest in the fact that God is in control. We feel peace and comfort that can only come from the Lord. We know that God is so faithful and that His Word is truth.
Sharing our story has been a blessing. Hundreds of people have been praying for our baby and our family. Sometimes the greatest encouragement has been hearing that someone doesn’t know what to say but that they are praying.

The next appointment was quite interesting. The doctor could not measure the CCAM and the swelling was gone. She said that we were looking at a new baby. The nurse said, “I don’t know if you’re praying or what, but keep it up.” We were amazed but not surprised. It has been incredible being able to rejoice with those who have lifted us up in prayer.

Please keep praying for Lydia Joy Sims. She has 9 more weeks to heal in the womb and possibly still a surgery in her future. We are all His precious children and He knows the big picture. Trusting in Him is the only way to live in freedom.

October 21, 2009

LYDIA IS OFFICIALLY OFF OXYGEN!!! I'm just watching the monitor today and tonight. Right now she's sating at 100% for the past 10 minutes. Her lung has completely filled in and the doctor can't hear any difference between her two lungs! I keep saying the same thing, but, "Praise the Lord."

This is a big day of firsts. She has been playing and batting at toys and has also rolled over three times! Fun stuff and such a sweetie pie. I actually call her my sugar bear. The nurses gave her a blankie bear in the NICU called a sugar bear and I just thought it could be a cute nickname for her.

Lydia has been getting a lot of attention in the email, facebook, blog world so I guess I'd better create a blog for all three children. This is an equal opportunity household. :)

October 20, 2009

Lydia had the doctor's orders to start weaning off of oxygen. Praise the Lord!!! We are so excited for this short process. The oximiter will be delivered and we will be trained tomorrow morning. All we have to do is take her off of her oxygen and monitor her for 10 minutes every 2 hours and then throughout the night. Two days of having a sat level of 93 or greater means that she can remain off oxygen forever. Wow!

October 17, 2009

A few things to remember...

1. Have faith no matter the circumstances.

2. Appreciate and cherish family and close friends.

3. Letting others serve me is humbling and it gives me a stronger desire to pay it forward out of love.

October 17, 2009

Oxygen. ..It's so great to have yet so inconvenient when you don't think you need it. There have been many times we've caught Lydia with her oxygen being used as glasses or a necklace and she's been happy as ever. There have also been some times that we failed to turn a knob or it has come detatched from a tank and she has been fine then as well. This must mean that she's healthy and can manage without extra oxygen. We'll see what the doctor says Monday.

Lydia is also supposed to be on an apnea monitor full time. She does not have apnea but it is standard procedure to have a monitor with oxygen. It tells us if her heart rate or breathing rate goes too high or low. It sets off an extremely loud siren when that happens or whenever the belt moves on her. It went off presurgery a few times when she was home for a day but now she's great. Right now we see it as an extra two cords and something that needs to be hauled around on my shoulder during the day. Needless to say we don't always use it as much as we are told to--rebels. It is absolutely wonderful to have at NIGHT--peace of mind. During the day, I'm either with her or checking on her often. However, I think the nurses and doctors would approve of our use of the equipment.

THIS MONDAY is her appointment with Special Care Clinic at Children's Mercy. They will run tests and labs to see if she can come off of her equipment. If she is able, they said that we can still have a tank of oxygen and the monitor for awhile in case we need it. Oh, I don't know what we'll do with all of the freedom. We can go from room to room and upstairs/downstairs with ease and we can say goodbye to the beautiful silver and green tanks all over our home. Can you tell I'm getting my hopes up? I just can't see any reason she couldn't come off of it. Praise God for her recovery! Forgive my complaining. I do have some level of guilt for complaining about this. My goals and perspective has shifted so much--life/death matters to convenience. Oh well. At least this blog helped me vent. Please pray that she (we) can be free on Monday!

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

August 2, 2009

Sunday, August 02, 2009 3:00 PM

Lydia is doing very well. She's back on the nasal cannula after some labored breathing and low oxygen levels today. Her jaundice also came back and is now back on her light station. She'll still be released at beginning of next week. She will come home with a nasal cannula and monitors. She's been nursing well and is just the sweetest little thing ever! She's a giant in the NICU--one of her pod-mates is only 2 pounds. We are counting our many blessings.

The surgeons goal for Lydia is to keep her well (at home) so she can have her surgery at 4 months of age. They will be taking out her lower lobe of her right lung so the top two thirds of her lung will grow in its place by the age of 4. We are very satisfied with this result and we pray that her lung will be healed by then so the surgery is not even needed. All things are possible.

Love you,
Kyle and Melinda

July 27, 2009

Monday, July 27, 2009 8:16:14 AM

We talked with the surgeons at Children's Mercy yesterday. The CCAM has been confirmed in the lower lobe of her right lung. At this time the CCAM will have to be removed by surgery. Lydia is stable and doing extremely well with the nasal cannula and if she can do well without the nasal cannula, she will be able to go home in a couple of days. The goal is to have the surgery when she is 4 months old so she is able to better handle anesthesia. The surgeons will first attempt to remove it thoracoscopically; if not they are not able to do it that way, they will make an incision in the side of her chest and remove it.

We are very happy with this news!!! We pray that she can do well without the nasal cannula and be able to go home in a few days, and that we can hold off the surgery until she is 4 months old.

Kyle and Melinda

July 26, 2009

Lydia was born on July 24th at 1:03pm measuring 9 pounds 1 ounce and 21 inches. She appeared very healthy at birth and then began breathing rapidly. Lydia was sent to the NICU at St. Luke’s Hospital (where Melinda is currently) for chest x-rays and observation. After the chest x-ray the doctors recommended transferring her to Children's Mercy last night for observation since there might be a possible need for an emergency surgery. St. Luke’s is not set up for that type of service. Lydia was very stable for most of the day and is currently stable at Children's Mercy. She has a nasal cannula to provide forced room air into her lungs. A cat scan was conducted on Saturday and the doctors are writing up an evaluation and plan that they will share with us as soon as they can.

Melinda is recovering remarkably well and she was able to get a day passes to visit Lydia at Children's Mercy today. I was able to hold and visit Lydia in the morning and Melinda was able to hold Lydia for a few hours and was able to feed and bond with her finally. Both Grandma's are here and have been a huge help. Kyle has been running back and forth to the different hospitals and Melinda sent everybody home tonight to get a good night's rest, I went with no argument. We're all planning another trip to visit Lydia this morning. Please call Kyle's cell phone if you would like to visit us in the evening. 872-4495. We'll probably wait on visitors to see Lydia since we can only take one person at a time but we should be up for some socialization in the late afternoon or early evening.

Carter and Chloe are doing well and love their baby sister. Lydia is extremely sweet and snuggly. Our biggest need we are anticipating right now is just lining up a little help with Carter and Chloe. If anyone wants to come play with them, hang out during naptime at our house, or if someone wants to take one or both of them out somewhere, that would be amazing. That may be down the road if surgery is needed and such but please let us know if you would enjoy doing something like that sometime.

We continue to learn to be flexible and trust God. He is good and His love endures forever. Thank you for everyone's outpouring of love and for continuing to pray.

July 21, 2009

Tuesday, July 21, 2009, 5:06 PM

This should be our last baby update until Lydia is born. She measured 9 1/2pounds today so we will be delivering via c-section at noon on Fridaybecause of her size. Please pray for a great delivery and that the x-rayand cat scan prove complete healing. We thank everyone so much for praying through this pregnancy. Lots of love, Kyle and Melinda

July 14, 2009

Tuesday, July 14, 2009, 3:12 PM

We had our ultrasound today and they said that there are NO concerns. There are only two more weeks until my due date and they want me to deliver naturally. Wow, thank you to every single person and group who has prayed for us. We continue in this journey in awe of what God is able to do and His strength and comfort in times of uncertainty. We're not really sure why we've been on this journey other than learning to totally trust God. It has been really humbling and exciting to see others pray for us, grieve with us, and celebrate with us during the past 20 weeks. Thank you for all of your support. We will continue to send updates--hopefully soon with the deliveryof Lydia Joy Sims. :)

July 2, 2009

Our sonogram on Tuesday was encouraging. Lydia looks great! She still has fluid around her left lung but it is decreasing dramatically. The sonographer mentioned, "We're seeing a miracle today." Her lungs and all ofher organs look great on the sonogram. When she is born the doctors will be able to determine, with an x-ray or CT scan, what needs to be done with her lungs. The only concern they had today was the size of her abdomen. Nothing looks wrong other than the abdomen is measuring 41 weeks and I am only 35 weeks pregnant. They measured that she already weighs 7 pounds 14 ounces. There may be a need for a c-section because of her size but they want me to stay pregnant as long as possible. They also said that if my body started labor, they would not stop me from delivering at this point. Attached is an article that was written last month for our church's women's ministry newsletter. The article gives a summary of the last 15 weeks. Thank you to everyone who is continuing to pray for our family. You are ablessing!!!