Kangaroo Time with Ryleigh!!

It's definitely apparent God heard many prayers about me wanting to hold my precious girl! I got a call yesterday morning from Dr. Powell letting me know that I would get "Kangaroo Time" with Ryleigh. Oh, what a moment. I was so shocked when the nurse handed me Ryleigh and said, "Okay, we will take her back from you in four hours." What?!! I was so excited, but definitely did not eat a big enough breakfast! I held her from 12:40 to 3:40 yesterday afternoon. I also got to hold her today for 2 hours. It really is hard to put into words how incredible the experience was. Of course there are many pictures below, with tearful eyes from mom. During "Kangaroo Time" they have you wear a button down shirt that's Dads so you can have some skin to skin time with your baby. They snuggle your baby inside with all the cords taped to your shoulder. Ryleigh was so cozy next to me. Our nurse Carrie kept coming by and checking on her. She was amazed at how well her vital signs stayed the entire time I was holding her. I think she is going to be a snuggle bunny!
  I also got to hold a mirror as I held her so I could see her little face. Each time I looked at her, her little eyes were closed. Each day that I look at Ryleigh, I am amazed at what a miracle she is. I am so thankful for the ways in which God has blessed us with the technology and ability to save babies as little as Ryleigh. Holding her tiny little body felt so different from the first time I felt Aubrey. Both were incredible for different reasons. I felt an amazing bond with Ryleigh today. I finally felt like I was able to be a mother to her. My sister reminded me of the song, "You have turned my mourning into dancing..." My mourning definitely turned to dancing today. Each day I will get to hold her now, as long as she is doing well.  Statistics have proven that babies get stronger faster if they have alot of touch and affection.  God definitely designed us to need touch and affection from each other. Despite this rocky road we have been on, I can honestly say I have never felt more loved in my life. All of you have given me strength with your encouragement and support. Ryleigh is proof that your prayers are working.
  After our "Kangaroo Time" when I left, Ryleigh's oxygen levels started looking bad. They did an X-ray and her lungs looked "wet". I guess Ryleigh wasn't ready for her Mommy time to be over yet. Specific prayer requests are:
1) Ryleigh has some bacteria in her trachea, so she is on three antibiotics now. We found out today that she has Ecoli. (not sure on spelling) We were told all these antibiotics can cause a yeast infection, which is dangerous in a micro preemie. However, the benefits are better than the risks.
2) Pray for her lungs to get stronger
3) Continued prayers that her PDA (Patent Ductus Arteriosus, the valve that connects the two chambers of the heart) closes on it's own

Blessings are... I got to hold Ryleigh!! Despite how weak her lungs are, it doesn't seem to be affecting the rest of her vital signs! And, they are going to start increasing her feedings! Praise God!! As always, thanks for all the prayers!

                                                                                                                                                               We have scriptures all around Ryleigh's incubator that provide us with much encouragement! Thank you Liz!

Update and Pictures

 Hello Faithful Friends,

    As promised, I wanted to post some precious pictures of Ryleigh that have been taken recently. I wish all of  you could see her in person, these pictures make her look much bigger than what she really is! As I was standing over her incubator today, I wanted her to feel my presence so badly. Sometimes I feel so defeated because I want her to know I am there, and I honestly don't know that she does. There have been many days that I don't even get to touch her, just because her blood gases don't look good. (These change hour by hour, and day by day.) I realized, God probably often feels the way I felt today. He is with us all the time, and sometimes we don't acknowledge or know that he is there. His loves pours down on us wether we acknowledge him or not. The love I have for Ryleigh is so overwhelming, and I know there is no way she could grasp or understand that.
  Before we get to the pictures, I wanted to update you on what we found out today. The good news is, they were able to get the PICC line in! Praise God! However, we did have to go back on the high frequency ventilator. She is doing really well on it though. I am hoping that means we can get off of it soon! The PDA is smaller from the medicine, but it's still a moderate size. So, the doctors are just going to monitor it and see if the rest of it will close on it's own. Otherwise, she will eventually have to have surgery. I may get to hold her in a couple of days, and I am really longing for that moment! Continue to pray that Ryleigh grows stronger every day, and that her feedings continue to get bigger. Pray for her PDA to close on it's own so we don't have to have surgery! While your at it, pray for Aubrey as she adjusts to all these changes! Thanks friends!-Kam

Ryleigh loves to cover her face with her hands

           Ryleigh in her cool shades

                          I love how peaceful she looks here

                           Today as they were putting in the PICC line, her oxygen tube got disconnected! A little scary! They said she handled it like a champ, and still was breathing pretty well without the support. They had to pump the oxygen manually with a mask on her face. Her sweet nurse Carrie (my favorite) told me I could get a quick picture without all the wires. I had to take it really fast, so she could get back to helping her breathe.

                You can't really tell here,but this was when we first got to see her eyes opening!

Finally, Mom's Thoughts

 I have been meaning to write this post for some time now; we are learning the blessing of time. It's hard to even know where to begin. I want to thank each of you who have been praying for our family, and have offered encouragement, prayer, support, you name it. This is by far the most humbling experience I have ever endured. I cannot describe into words how much the emails, posts, texts, prayers mean to us.  Those of you who have been through this journey with your child, thank you for providing me with empathy and pictures of your family.
   It's hard to believe we have only had Ryleigh a week now. I feel like I have been on this road forever. I have never experienced pain like this in my life. I honestly can say this experience has given me a greater understanding of how deep God's love is for us. It is very, very painful for me to see Ryleigh hooked up to so many cords, fighting this fight. I would do this for her in a heart beat. God feels the same way about us, when we are experiencing pain. One of my distant relatives that had twins sent my Dad a profound message that said, "Once again a tiny baby is spreading the gospel." I know God is using Ryleigh's birth and life to bring others to their knees in prayer. Thank you Ryleigh!
  There are so many things that I took for granted with Aubrey in her first few months of life that I didn't even realize were a privilege. When Ryleigh entered this world, there were no sounds of a baby crying, there were no smiles on people's faces, only the sound of the doctors as they tried to help Ryleigh breathe. She was taken away before I could even see her. We were told just hours later that it might be good for us to come and see her. They were taking some last measures to hopefully bring about a change but they didn't want to give us false hope. Seeing such a tiny baby was almost more than I could endure. I will never forget placing my finger in the incubator, and Ryleigh grabbing it. I believe she was sending me the message, "Don't give up hope Mom, I am still here. The doctors don't know how strong a fighter I am." I didn't hold her hand for long, it was more than I could emotionally stand. I told Rod I couldn't take it. That could have been the biggest mistake of my life. Ryleigh, I will never give up on you like that again. All of you prayer warriors were at work. You did not give up hope. The next morning we got a call saying her levels were up and she was doing better. We still are in the roller coaster world of NICU life, but we are all hanging in there.
  What does Ryleigh's name mean? Rod and I spent hours trying to find a name that we felt defined Ryleigh and the journey she has been on since she got here.  Ryleigh was a name we had discussed for many month's and as we searched names with meanings like courageous, brave, etc., Ryleigh came up over and over again. The definition of her name means brave, courageous and lively. Even while Ryleigh was in the womb, I spent one night rocking in the chair, and I got this overwhelming feeling that her name was supposed to be Ryleigh. Now that we have had Ryleigh, it is completely fitting for her to have that name. Ryleigh's middle name is Grace. We spent some time talking about the various meanings of Grace. Our first thoughts centered around meanings like unmerited forgiveness. But we also talked about the meaning as Paul used it as he concluded each of his letters. The Greek word Paul uses here is also used in Luke 1:30 - "But the angel said to her, do not be afraid, Mary, you have found favor with God". Ryleigh do not be afraid my girl, you have found favor with our Mighty God.

Specific prayer requests that you can be lifting up for Ryleigh currently are:

1) Tomorrow the doctor will try to run a PICC line  up her arm to her heart, and the first time didn't work. If it doesn't work after another couple of trys, they will have to have a surgeon make a incision in her shoulder to place the line in. I really don't want her to have to undergo surgery!

2) She has a PDA (Patent Ductus Arteriosis) between her two chambers of her heart. Most babies are born with it closed, but premies often times are born with it open.Blood that is supposed to run out and into her body is running into her lungs. She is currently on medicine to close it, but if that doesn't work, she will have to have heart surgery to get it closed. We will find out tomorrow if the medicine is working, and if her heart murmur has improved.

3) Each day she is gradually having to get more oxygen support. Which means she may have to go back on the high frequency ventilator.  This is typical of the journey in the NICU, however, we would love for her not to have to go back on it.  The high frequency ventilator gives her alot of vibration, and it makes me feel like she is super uncomfortable.

4) The X-rays showed Ryleigh has developed a slight case of lung disease. The nurse assured me this is also typical of a baby born at her age. She had such a tough start that her body got worn down. She said that because Ryleigh is so young, her lungs will develop the cells that she lost over time. Pray that her lungs continue to get stronger!

5) Pray for the other NICU babies and parents too. Unless you have been down this road before, I truly cannot describe what it feels like to see your precious baby go through this.

We love you all and we will post pictures later! Blessings, Rod and Kam

May this Family be Made Complete

Kingdom Seekers,

Ryleigh continues to remain in stable condition over the past couple of days.  Both Kamara and Rod have been able to visit her during Touch Time.  During this time, they are able to change her diaper, feed her, pray for her, and hold her hand.  Another positive, Rod and Kamara are beginning to form relationships with other parents there in the NICU.  This has been a prayer of many of us because we want Rod and Kamara to be able to minister to others.

During our quiet time, while at the dinner table, or through out the day, I ask that you pray this prayer over Ryleigh.  A good idea would be to print it out to have it handy.

This verse come from Ephesians 3:

14 I fall to my knees and pray to the Father,15 the Creator of everything in heaven and on earth.16 I pray that from his glorious, unlimited resources he will empower Rod, Kamara, Aubrey and Ryleigh with inner strength through his Spirit.17 Then Christ will make his home in their hearts as they trust in him. May their roots grow down into God's love and keep them strong.18 And may Rod, Kamara, Aubrey and Ryleigh have the power to understand, as all God's people should, how wide, how long, how high, and how deep his love is.19 May they experience the love of Christ, though it is too great to understand fully. Then this family will be made complete with all the fullness of life and power that comes from God.20 Now all glory to God, who is able, through his mighty power at work within us, to accomplish infinitely more than we might ask or think.21 Glory to him in the church and in Christ Jesus through all generations forever and ever! Amen.

Specific prayers: 1. May Rod have peace and comfort as he goes back to work on Wednesday.  2.  May they form incredible relationships with other couples in the NICU where they may minister and share our Father's love. 3. May Kamara have peace, comfort, and strength as Rod is not there during the day.

In Him,

zp 

Baby Cox has a Name!

Update: First, let us find out about the platelets.  Baby Cox received a platelet transfusion along with some antibiotics last night.  Because of your prayers, her platelet level is back up to 200. Amen!  Thank you for all of your prayers. The doctors are saying she might have an infection which might be caused by a blood clot. The doctors are not for sure this is the actual reason.  Let us all prayer that there is not a blood clot.  Kamara has been to the hospital to visit three times today, and Rod was able to be there twice.  Also, continue to pray for their strength as they have to make several trips a day down from Frisco to see their little one.

Baby Cox's name is........Ryleigh Grace Cox

Because the name has been chosen for a particular reason, I want Kamara and Rod to post about why they chose this particular name. What a beautiful name!!

Tonight has been a very special night for Rod and Kamara.  About 40 people gathered at Ben and Liz's house this evening for a couple of hours to pray over this couple, read scripture, and worship.  The main purpose for tonight was to encourage the Cox's during their journey.  Kamara and Rod also opened up about their journey these last few days and were very appreciative to everyone for all the support they they have been receiving.  There were many tears shed tonight while the Holy Spirit brought about his peace and strength.  Thank you for everyone that came tonight.  You were very uplifting and encouraging with your Spirit filled comments, prayers, singing, and chosen scripture.  Here are a few pictures of tonight.

 

  Kamara and Rod's Hands

 

 

A few pictures from the last couple of days.

 

Check out Ryleigh's eyes

 

Chris Clark (childhood friend of Kamara)

Tami (Kamara's twin sister)

Brent Hughes (college friend and member of the band Cuatro)

Thank you for all of your prayers and support for this family.  It is truly appreciated and needed.

In Him,

Please Pray

Kamara just received word that Baby Cox's blood platelets are low. She started off at 200 and it has continued to decrease. This morning it was at 90 and it is at 75 right now. The nurses would like it to be at least at 150. They said that she probably has an infection that was caused by a blood clot. They are going to be giving her antibiotics and a platelet transfusion to raise her levels. Hopefully, this will work. Please pray a specific prayer for her platelet level. We will give you an update when we have one. Thank you so much for your prayers and support!

Room Air

Good News!!

Today was a great treat for the Cox family because of two reasons.

1.  Baby Cox is now breathing room air with the help of a ventilator; she probably won't be off the ventilator for several more weeks, but we are rejoicing that she is now breathing air like you and me without any extra oxygen.

2. Today, Kamara and Rod were able to look into Baby Cox's eyes for the first time.  Today, she opened her eyes this morning to put a joy in the hearts of her parents.  She still can't open them very wide, but they are open.

Chis Clark and Tami were able to go today to the 12:00 "Touch Time".  They were able to experience holding Baby Cox's hand while loving on her.  Also at the 4:00 "Touch Time", I was able to experience the bliss of being with a 24 weeker.  On tomorrow's update, I will share with you my experience.

Baby Cox has a name!  Kamara and Rod are waiting to tell family first before they release her name to the public.  You are going to fall even more in love with this little one after hearing her name.  A gorgeous name for a gorgeous little one.

Last night was their first night at home in Frisco.  While it was tough, Rod said it was not as rough as it could have been if everyone out there was not praying for them.  He and Kamara also had a lot more time on their hands than they were used to in the last few days.  This gave them a chance to sit down,  pour over all of your comments on the blog, and let them set in.  Rod told me today that he has very much enjoyed everyone's comments.  He stated it was hard to believe that so many people were supporting them, rooting for them, and loving on them.  Friends, please keep the comments up.  If you don't have a blog, you can still leave a comment by clicking on the anonymous link.  After leaving your comment, you can type your name in the comment section so they know who wrote it.  Thank you for taking the time to write scriptures, prayers and beautiful words.

Please keep up the prayers for Baby Cox.  In the middle of the night, while at at stop sign, or at the dinner table, say a quick prayer for strength and truth.

While these last two updates have not had any pictures, we will make sure to upload a few tomorrow.  Thank you for your prayers for our brother and sister, and continue to beseech the Lord on Baby Cox's behalf.

In Him,

zp