6 Weeks, 3 Pounds and Ventilator Free!

  It's amazing how much can change in just a few days. We were kind of stuck in the same place for awhile with Ryleigh, and she wasn't really getting worse, or better. Just within the last four days, her lungs have really started improving. We went way down on her oxygen, and pressures, which is always a good sign. Dr. Anderson decided to go ahead and give her a mild steroid, to help her lungs out a bit. It has been working too!
  Last night when they weighed her, we had them check 3 times. She gained 3 ounces in 1 night! We are so happy to report that she is now 3 pounds, 1 ounce! Getting to the 3 pound mark feels really good. Yesterday Dr. Powell came up to me and said we were going to excubate her.(Which means no more conventional ventilator.) I couldn't believe it! I thought that would come in a couple of weeks. Now she looks like she is about to go scuba diving. I feel really sorry for her, she hates it. However, this is a step forward in the right direction.
   I sat holding Ryleigh with tears yesterday, just thinking about the first time I heard her cry. I never thought I would look forward to that sound! They warned me it will sound funny for awhile, since she has had the tube going down her throat. When we put her back in her incubator after I was holding her today, I got to hear her sweet voice. It was such a little cry, but as precious as can be. It's hard to hear her cry and not just be able to pick her up and console her though. My heart aches for her so much of the time. Now that she is on the CPAP Mask (Continuous Positive Airway Pressure) she can't open her eyes. Isn't that awful? You could see when she was trying, but just couldn't get them opened.
  Ryleigh has gone up on her feedings, which is a good sign. Her belly looks so much bigger than the rest of her body, but it's adorable. I also got to see Ryleigh in her first outfit. It makes her seem more like a baby, to see her in clothes. I never knew they made baby clothes so tiny till Ryleigh.
   It's hard to believe we have been in the NICU for 6 weeks today! OH man! There is another 24 weeker in the NICU now. I feel so blessed with how far we have come. I looked at her birth pictures not long ago, and all the same feelings came back. I am so glad I don't have to go back to that place.
   The NICU provides a date night for families in the NICU, and we had our first one this week! I have to say, it was pretty neat. The nurses even served us the meal.  It was nice to escape for a couple of hours!
  Oh, and we got moved today! We now get our own little private room! I can't believe it!
  Enjoy the latest pics below.  As always, thanks for all the prayers and encouragement!

Dad's first Kangaroo Care! Not many Dads can say they held their baby at 28 weeks!

                                     I love this outfit on Ryleigh!

                              Check out all the hair!

                                 The last pic I took of Ryleigh on the ventilator

                            I love how Ryleigh is holding my hand here.

         Aubrey, you're too little to pump

                          Some of our nurses, and waitresses for the night

             Ryleigh on CPAP (As you can see, it's hard to find her face underneath the mask)

                                Our little thumb sucker

                               Please no more pictures!

Carly is Here!

Carly is here! There is so much I need to update about Ryleigh, but I wanted to post about Carly for now. She weighs 7 pounds, 7 ounces and is 20 inches long. Tami went very quickly after laboring for just a few hours. The nurse decided to go ahead and check her after she said she had started experiencing pain again. Come to find out, it was time to push! Carly is just as precious as can be. Enjoy the pictures.

Every good and perfect gift is from above. James 1:17

1 Month Old

It's hard to believe that just yesterday Ryleigh turned 1 month old. I am amazed at how far we have come. On Feb. 16th, it was just a regular day of moderate bed rest. My mom came over, and helped with the laundry, and we went and got burgers. I remember telling my mom, "I've had some weird cramping." She said, "Your not in labor are you Kamara?" My response was, "No mom, this isn't what it felt like with Aubrey, I have had cramping this whole pregnancy." I then went to Tami's house why our small group paid for a maid to come. Tami and I hung out and talked and watched American Idol. When I left her house, she gave me a kiss on the cheek. This is not a typical thing for us to do, although we love to hug. It was weird twin intuition I guess. Later when I was relaxing, and Rod was giving Aubrey a bath, I started having contractions that were more like what I would expect labor to be. To make a long story short, in just a few hours we were on the way to the hospital, and I remember crying in the car. Rod said, "What's wrong?" I said, " I don't want to lose her." When we got to the hospital, I was hoping I was there for extended bed rest. When Dr. Fong said I would be having the baby that night, I completely lost it. It all happened so fast , and in no time at all I was pushing out Ryleigh. I remember saying, "I feel like I am going to wake up from this nightmare." After having Ryleigh, I did have a bit of a panic attack. Our family and friends were all very emotional, as were weren't sure Ryleigh was going to make it.   Liz and Tami, thank you for being there with me through the entire experience. You saw a side of me I didn't know existed.

We are now moving in the right direction with Ryleigh. She got out her PICC line! Today she even got her first pacifier! And, she is continuing to go up on her feeds. At birth she weighed 1 pound 10 oz, and was only 12. 8 inches long. Her feedings were only 2 ccs which is like 1/2 a teaspoon. Now we are up to 2 pounds 6 oz, and 13. 3 inches long. She is eating 21 ccs now, which is a little more than 1/2 an ounce. GO RYLEIGH! The nurses are continuing to go down on the amount of breaths per minute Ryleigh gets, and her oxygen level. We are so excited about these milestones. Please continue to pray for her lungs and continued growth! Blessings to you all! -Kam  

This was one of the first photos-At the time Ryleigh was receiving photo therapy for jaundice.

1 month photo! I love that the nurses put her in a green blanket for St. Patricks Day

She is becoming more and more alert now!

Ryleigh sucking on her first tiny, little pacifier

Surgery Recovery

Hello All,

  Ryleigh did great through the surgery Tuesday. We were very pleased to hear there were no complications. I asked the nurse how big Ryleigh's heart was, and she said it was the size of a nickel! Can you believe that?
  Tuesday through Thursday were a little rough, but they warned us that would be the case. Ryleigh had to go up on her oxygen and ventilation, and the next step was a dose of steroids. Thursday night Dr. Anderson wanted to try putting her pack on the conventional ventilator before we decided on the steroids. The conventional ventilator is actually not as strong as the the high conventional, but for some reason Ryleigh seems to oxygenate better on it. Since we moved to the conventional ventilator, Ryleigh has gotten better and better. Praise God! She is getting less and less oxygen every day now. If she continues to progress like she has been, she will get to get out her PICC line this week. (It's basically an IV that goes all the way up her arm to right above her heart. ) One less IV, works for me! Another wonderful blessing is, I got in some more Kangaroo Care time! It feels so good to be able to hold her again! Daddy is going to hopefully hold her some time this week!
   During the rough days this past week, I had some moments of thinking, "Why couldn't I have kept her in me just a little longer?" A set of twins came in the NICU recently, and they are about 32 weeks. They are considerably bigger than what Ryleigh was at birth, and much healthier. I know I can't compare Ryleigh to other babies though. It's in no way beneficial. Satan loves feeding me those thoughts! There are things that happen in life that we can't understand, no matter how hard we try. I can rack my brain trying to come up with whys and hows, but it's not going to change where we are at today.
   One of my friends who has graduated from the NICU world, reminded me of the song "Because He Lives". It's such a classic hymn, but I rarely sing it anymore. When I listened to the words, I just cried and cried. The words are so perfect for Ryleigh and our family to focus on at this point in our lives. Thank you Jaymie! I actually found on Itunes that Kristen Chenoweth has a great version. She was in the musical Wicked.

Because He Lives

How sweet to hold
A newborn baby
And feel that pride and joy she gives
But greater still
The calm assurance
That this child can face uncertain days
BECAUSE HE LIVES

Because he lives
I can face tomorrow
Because he lives
All fear is gone
Because I know
He holds the future
And life is worth living
just because he lives

Mom and Dad spending some time with Ryleigh before surgery

            Check out Ryleigh's cool bandage!

                      We had to wear masks to go back to see Ryleigh. We had just heard the good news that the surgery went well.

                   Worlds Greatest Nurse! I was so happy she was working the day of Ryleigh's surgery. I love you Carrie!

                        I was not expecting to get to hold her last Friday night! It was a wonderful surprise!

  
Relaxed Ryleigh

                      Last week when Tami and I were hanging out at her house, Aubrey went and grabbed all the bags and purses she could find. She knew we thought she looked pretty cute! She keeps me smiling every day.

Surgery is Done

The surgeon just came out and said everything went smoothly with no complications. Rod and Kamara will get to see her soon! Praise God!
~liz

Surgery has started

It's 2:40 and they just started the surgery. Keep praying, friends!
~liz

Getting Ready for Surgery

Hi friends,
This is Liz writing for Kamara. Rod and Kamara are at the hospital and are waiting for the surgeon(s) to go over what all will take place today as well as the risks of the surgery. Please be in prayer for them as it is always scary to hear the "what ifs". The surgery is scheduled for 2 pm and should last about 45 minutes. Please join us as we cover Ryleigh and the family in prayer during that time. We know we serve a big God who is greater than any risk or side effect!

We love you, Ryleigh and are praying that our sweet Father will hold you in His arms right now.

Thank you so much for your prayers! I will continue to post as I receive updates.
~liz

Proverbs 31:25 Ryleigh is clothed with strength and dignity. She can laugh at the days to come.

Surgery Tomorrow

Friends and Prayer Warriors,

  Please pray for Ryleigh tomorrow. She will be having heart surgery to close the PDA valve around 2:00 p.m.  Of course this brings on a lot of anxiety and emotions for me, but I know this is what is best for Ryleigh. Pray that the surgery is a success, and that there are no life long damages from the surgery!
   Tami made me a wonderful praise c.d to encourage me during this difficult time. The song that has made an amazing impact on me is called Hold On to Jesus by Erin O'Donnell. These words brought tears to my eyes today. They are so appropriate for what I would like to say to Ryleigh. Ryleigh your Mommy, Daddy and sister love you!

"Your a little piece of heaven, your a golden ray of light. And I wish I could protect you from the worries of this life. If there's one thing I could tell you, it's no matter what you do, hold to Jesus, he's holding onto you.

Hold on to Jesus, and cling to his hands. Rest deep in his mercy when ever things get rough. Don't lose sight of his goodness, and don't ever doubt this truth. When you hold on to Jesus, he's holding on to you.

Hear me dear Jesus, rock this little one to sleep. Keep her close when she's scared, and give her Grace when she's weak. I know she will stumble, but I know she'll make it through. If you hold on to her, just like you said you'd do."    Hold to Jesus Ryleigh, he's holding on to you.

I got to give Ryleigh a bath tonight for the first time. It was so much fun! I will post those pictures later! I also got to kiss her on the head again!

I love this precious picture of Ryleigh. She looks really tired, but I still love it.

               Sleepy, sweet Ryleigh

                 Sometimes a kiss through the incubator is all I get

                          I have really been missing all my time with Aubrey, but as you can see she is happy as can be. She loves her cousin Kate, and is obsessed with her Aunt Tami. Our girls looked so cute reading their books today.

"Your Grace Still Amazes Me"

It's been awhile since I have updated, and I apologize for that.  This week we have had a few set backs.  Ryleigh had to go back on the high frequency ventilator, and we had a couple of scares. When I was holding Ryleigh on Monday during "Kangaroo Care", all the sudden she excubated, meaning the tube got disconnected from her throat. The nurses assured me that it happens all the time, and it wasn't because of anything I did. Ryleigh's oxygen support was gone, so the nurses quickly took her from me, and had to "bag her" which means they had to pump oxygen in her using the manual oxygen bag. It was very scary, and I lost it in the NICU.   Wednesday they moved her back to the high frequency ventilator, so that means no "Kangaroo Care" till she goes back to the conventional ventilator.
  Her lungs still look pretty weak, and she has a pretty big heart murmur. Since Ryleigh has not been getting stronger, and her lungs seem to be struggling, it looks like we will probably be having the heart surgery next week to close the PDA valve. There are risks with this, but if this is going to make Ryleigh better, then I am happy. Right now blood that is supposed to be flowing into her body, is flowing into her lungs.
  Today I was about to leave, and the nurse had suctioned her mouth (it's to clean out all the junk in her mouth, like they do at the dentist), when all the sudden everything on the monitor started dropping. Her heart rate, etc. It was all hands on deck as they once again had to "bag her" to try to help her start breathing better. She turned white during all of this. Every bit of me wanted to run for the hills, but I knew I should stay there to be with her. I honestly cannot describe the fear that I had in that moment. The nurses felt she may have had a spasm in her lungs that caused this after being suctioned.
   It seemed like hours before everything started  improving again. They allowed me to give her a kiss on the head before putting the lid back on her incubator. I don't know why I feel like I don't have a right to cry in those moments, but I went to the bathroom and weeped.
  I really wish Ryleigh was not having to go through all of this. I long for the moment when I can rock her in her rocking chair till she goes to sleep, nurse her, kiss her as much as I want, and see her smile. It makes my heart heavy just longing for that moment.
   We do have some blessings though! Ryleigh is almost 2 pounds now! She is digesting her food really well, and is going up 1 cc every 12 hours!
All week I've been thinking about the song, "Your Grace Still Amazes Me" by Phillips, Craig and Dean. I know the song was not intended to be about Ryleigh Grace, but I can't help but think about her.
"Your Grace still amazes me. Your love is still a mystery. Each day I fall on my knees, cause your Grace still amazes me.  Your Grace still amazes me." I know that no matter how much I feel Ryleigh belongs to me, she actually belongs to God. He has a plan for her life, and this is her story. She truly amazes me. Each day is a miracle with her.
  Specific prayer requests are:

1) Prayers for Ryleigh's lungs to get stronger!
2) Prayers that if we do have to get the PDA valve closed, that it improves her lungs quickly, and takes care of the heart murmur
3) Prayers that the Ecoli is all gone from her trachea
4) Prayers that Ryleigh doesn't remember any of this!

4) Prayers for the other NICU moms

5) Prayers of thanksgiving for my favorite nurse Carrie

As always thanks for all the prayers and support. Each of you are what keeps me strong when I truly don't feel like I can face the day.

Here are some pictures of our sweet Ryeligh

This was right after things improved this afternoon. She still wasn't her normal color, but you can't really tell here.

                   This is just to help people grasp how small she is! She is getting much bigger!

      
Ryleigh has my big hands, so Rod's ring wouldn't fit over her hand. We instead placed his ring on her leg.

      I have been feeling like Aubrey is getting left out, so I wanted to post a pic of her too. I love my sweet Aubrey. As you can see, she loves apples! In this picture you can really see her crazy hair!

Got milk?