Saturday, November 29, 2008

Days of Thanksgiving

Little Miss Wildcat looks likes she's planning something. She's grinning...she's figuring out how she can get rid of the CPAP, I think. She hates that thing. Maybe she's smiling 'cause she knew it was on it's way out. After trying her on the high flow nasal canula at 2, 4, 6, then 8 hour intervals daily, the dr. decided he wanted her to try it for 24 hours and see how she did. Since early Thursday morning, she has been doing excellent! In fact, this entire week has been full of excellents!
All week we have been recieving rave reviews from her nurses, respiratory therapists, and doctor. I have been very thankful for that...especially since I was not able to see her Monday, Tuesday, and Wednesday. I felt the beginnings of a cold, started to chug OJ and double up on vitamin C, and decided (with the urging of her nurse Monday morning when he heard my stuffed up sounding voice) I needed to stay away to keep my girl healthy. What torture! It was truly awful, but I tried to remember the sweet whispering I received shortly after her birth- "she's not just yours". The NICU has become an extension of our home, and No. She is not just mine. We are sharing her, knowing she is in the best care possible.
Every Thanksgiving morning, we usually get up and watch the Macy's Thanksgiving Day parade. We love the floats, the bands, singers and of course the Rockettes, but we especially look forward to seeing Santa officially ring in the holiday season. This year was different. I asked the kids if they would be disappointed if we missed the parade and headed to the hospital after breakfast to see Ella. Everyone was excitedly in agreement. When we got there, our dr. was there and he gave me her latest updates. She was doing well on the canula, so they would continue that full time if she tolerated it. Heart valve still being watched...not much change, so we'll keep watching. Upped her feeds. Still receiving the human milk fortifier in my breastmilk and vitamins. Gaining weight. She is anemic but she seems to be handling it and her iron reserves are kicking in. As she continues to gain weight, she will be less and less anemic. He said that it is his dream for all the babies at Ella's stage to be where she is. He said he was very pleased with her progress and that if she kept up what she's been doing for another month, she'd be cured of her preemieness. (Of course, I asked if that meant she could come home and he said no. that is not what he meant.) He told us that this week she hit some milestones- 30 days old- 5 weeks this Saturday, 30 weeks gestation, and 1000 grams- 2lb 4oz "ish". This was all wonderful news, but the best part of our visit was Hilton holding his girl for the very first time. One of our respiratory therapists has been hoping for this day and he was determined it would be that day. He was right. He was so sweet about it. He went and got the kids so we could take a family picture. There usually can only be 2 visitors at a time. We have to take turns bringing one child in at a time, but there weren't any other visitors at the time, so I guess they decided it was ok. We were thrilled. This was the first time our whole family was together with precious Ella. What a gift and a blessing!

So, each day for us is a day of thanksgiving. We were (and have been) on a high after that great visit. This may be our Christmas picture since we are all together, although I may wait and send out a new year's letter or Valentine' s Day letter....when my sweet Ella is home in our arms full time. Thanks to all of you dear ones, my blessings- my friends, family, new friends I don't even know- who have taken us into your hearts and prayers. May the Lord bless you as he has our family. He continues to bless us daily and carry us through this amazing journey.

Friday, November 21, 2008

Miss Priss

All day Wednesday, I tried to get to the hospital to see my girl. One thing after the other seemed to happen to keep me from getting there. I decided I would go in the evening after dropping the kids off at church for activiites. I called to check on Ella around 4 pm. Her nurse said that i must have had mother's intuition to call. "Miss Priss", as she refered to her had just extabated herself-pulled her vent out. I knew it was coming. She loves hanging onto it and her feeding tube. That will be next. They kept an eye on her, and she did very well, so they put her on the CPAP (blows puffs of air into her nose to remind her to breath). So... when I got there at 6:30pm, my friend and respitory therapist, asked if I wanted to hold her. What a thrilling surprise! If she would not have gotten rid of that vent, I would not have been able to hold her. It was fantastic! We kind of put her down my to skin. I loved it! She is so precious. Thursday I was able to hold her again for about 2 1/2 hours. Those wooden rockers are not too comfy on the bum after that long, but I didn't notice till later. I was too into snuggling with my girl. Her dr. came by and gave me her latest updates. Good bowel sounds and good output. Her feedings have been upped to 12 cc every 3 hours. She is tolerating them very well....a good eater, it seems. She has been on an antibiotic for a possible infection, but her lungs looked clear on her last chest x-ray. No brain bleeds. PDA valve looks like it is getting smaller on it's own, so that's great. He said he was very pleased with her progress. I like hearing that. The docs give you the info and that's about it, so I like hearing a positive comment. All good news today. How blessed we are! We continue to take it one day at a time, praying and trusting in our Father in Heaven. It is in His hands. Thank you all for the outpouring of love and support. Keep those prayers coming. We feel them and we definitly need them. Love to all.

Monday, November 17, 2008

Little Friends

This past weekend there were 8 babies in the NICU. I know CG, who is in the isolette next to Ella, her mom and her dad. I know the twins. Their grandma was Sam's teacher last year. I know where the babies are located and who is who, even if I don't know all their names or stories. Friday afternoon, while Sophie and I were visiting Ella, the baby girl on the end, started to crash. I knew I needed to leave. I found out during the weekend that she did not make it. She returned home to Heavenly Father. That was difficult for me to deal with. I do not know this family personally, but my heart, thoughts and prayers are with them. We lost a little friend this weekend. Sunday afternoon, we headed up to the hospital for a family visit. We take the kids on Saturday and/or Sunday for visits. When we got there, we were unable to go into the NICU because a new little friend was arriving...a 23 weeker. My hearts and prayers are with this family, as well.
Ella's nurse this weekend, Ellen (I won't say she is our favorite, but we do LOVE her), had put this heart in Ella's isolette. It beats like a mommy's heartbeat, so Ella can feel more "at home" -like she did in mommy's tummy.
Another little friend was introduced this weekend- "Mr. Binks". Ella was given a paci to try to suck on to help her with her suck reflex. She seemed interested for a bit, but then, she'd let go.
Big sister, Sophie, was able to touch her baby sister on the tiny foot.

Big sister, Maddie "hugging" Ella's tiny baby feet.

The boys and I were able to sneak in for a quick peak on Sunday just before the 23 weeker came in. We had taken the other kids for a visit Saturday, but Sam was at a football game. Ellen was sweet enough to hurry us in for a quick hello.
On cue, the girl waved goodbye to us....seriously. The boys told her goodbye, and she threw up her hand. It was hilarious! We love this girl. She has been with us 23 days. And even though, we have not been able to cuddle or hold her much in those 23 days, we have definitly fallen in love with her. We are grateful for every day we have with our precious baby sister and pray that she will continue to grow strong and progress each day.

Friday, November 14, 2008

sweet baby

Sweet baby, Ella, had to have her second blood transfusion, Tuesday. Nov11. I was able to spend the entire day with her. It was very nice to be able to be with my girl all day.She's trying to rest through it...with her hand over her eyes...just like Daddy.
I don't know if she knew Mommy was there with her, but she loved holding my hand...not as much as I loved it. Since she hasn't been too stable, we haven't been able to hold her since that first time. We've even had limited touching because it tends to overstimulate her, so I'll take anything I can get.

She rarely stays too still. I love that about her, but I also wish she'd just take it easy and rest. We do think it is hilarious how she kicks up that leg.
I was able to spend most of Wednesday with her, too. I love that. I went back after choir practice in the evening too. She had hit the 2 lb. mark! yippee!! By thursday, she had gone back to 1lb 15oz and stayed there today, too. I'm sure she'll gain it back by the weekend. They have added human milk fortifier to my milk to give her more calories. We haven't had much change this week...still on the vent. At times, she is letting the ventilator do much of the work, but at other times, she jumps in and does it. She has had some fluid on her lungs that they are treating. The open valve in her heart is still being watched. As of now, the dr. isn't planning a course of action. We are taking it day by day...thankfully with more ups than downs, so far.
OOOh, sweet baby.

Monday, November 10, 2008

How are you?

Saturday night right before going to bed, the hospital called. Ella had to be intibated- go back on the ventilator. She was having many apnic episodes right on top of each other, and her heart rate was dropping too. She wasn't coming back on her own like she had been doing. I did not want to hear that news. I knew we would and will have setbacks, but it was just hard to hear. We had just visited with her as a family earlier in the evening and then gone to dinner. I thought of going back, but I didn't. All night I questioned myself for not returning to be with her. Could I have done something? The resounding, harsh answer is no. There is not much, other than pump my "magic mommy milk" that I can do. Rough night. Sunday morning before leaving for church, I called to check on her only to hear she was not at her best. She had missed some feedings because she was not responding to them and properly digesting. I got ready for church but felt irritable and snappy. I went to church, held choir practice, but really didn't want to speak to anyone. I was asked the polite "How are you?" My response probably scared a few people. I could not reply with the typical "fine. How are you?". I responded to one with "I'm falling to pieces. How are you?" To another, "I feel like I'm slipping off a muddy slope. How are you?" I asked one would you like to hear "fine" or how I'm really feeling? I may have given too much up yesterday, shocking some along the way or I may have done what we really should do when asked how we are feeling. We should open our hearts and share...and the listener, having asked the question in the first place, should be willing to get the real answer. As followers of Christ, we have commited to bear one anothers burdens that they may be light. I thank all those innocent brothers and sisters at church who listened to me open my heart....and then some. After church, I was able to visit my sweet baby. She was loaded down with soft "bean bags" to keep her from moving too much. She was lying on her tummy resting, although that little wildcat tried to get her bum moving to get that bean bag off. I love her fighting spirit, but I think she needs to let herself rest. I think she has worn her little self out. We couldn't touch her at all yesterday because she was just not responding well to it. That's ok. I was fine just seeing my girl and loving her through the plastic box. This morning the doctor called. She does not have an infection. He upped her milk intake to 7cc every 3 hours. She tolerated all her feedings yesterday and through the night. Her metabolic screen (our oldest Sam has a genetic metabolic disorder- 3MCC) came back negative. She will have another echocardiogram to check on the open valve and tomorrow she will need a blood transfusion- she is anemic. They will try to wean her slowly off the vent as she can tolerate it. Today, if asked "How are you?", my response will be different. Better than yesterday. Surviving. Coping. Getting along. Dealing. Making it. Those are all very accurate. Our little family is trying to be as normal as we can in a very not normal situation. I am proud of my sweet children, Sam, Maddie, Jack and Sophie and my dear hubbie/friend, Hilton. We have always stressed the importance of working together like a team. They are doing great. I am proud to be on their team. Keep those prayers coming. Love to all.

Saturday, November 8, 2008


I belong to The Church of Jesus Christ of Latter-day Saints. I am a Mormon. I have Utah pioneer ancestry- you know, the ones in the history books that walked and pushed hand carts all the way to Utah- on my Dad's side and my mom's parents were Southern pioneers. I have been a faithful member of this church my entire life, but there was a point when I could no longer rely on my parent's and other's faith and testimony. I had to KNOW for myself. I do KNOW. I Know God lives. I know He loves me. He hears my prayers and He answers them. He sent His Son to this earth to be the Savior of mankind. He lived a perfect life. He healed the sick; He gave sight to the blind; He touched hearts and changed lives. He Atoned for every sin for every person and suffered a cruel, unthinkable death being nailed to a cross in his palms, wrists, feet and a spear wound in His side. But He conquered death and He lives. Jesus Christ is my personal Savior. I am a child of a loving Heavenly Father. He is a real part of my life. I live in a wonderful, closeknit, church going community where I can testify and witness with my friends and neighbors without fear or embarassment. As I witness and share what I know, my faith in the Lord is strengthened. I am thankful for the wonderful associations and friends our family has in our town. My children have been and are taught by some of the most faithful, dedicated Christians I know. So many local churches have Ella and our family on their prayer rolls. Her name is on several of our churches temple rolls. Many have fasted on her behalf. I know special Jewish prayers have been taken to synagogue for her. The mother of a friend of mine made her a pink and white rosary. I am touched by the faith and testimony of so many friends of different faiths and beliefs. Our family kneels each night in family prayer to thank our Father in Heaven for all we have and ask for special blessings we need. I know He hears our prayers. We feel like we are in a modern day miracle with our precious Ella. It's scary, at times, but exciting. It takes faith to turn it all over to the Lord, but that is how we are getting through this. It is my witness that we are children of a loving Heavenly Father. He sent His Son to save us. He Lives. I testify of this with all my heart. It is my wish that we will all dig a little deeper and testify of what we KNOW. If there is fear there, He will bear us up. He will strengthen us and those that are testifying will be edified as they share their witness. Last night at Wal Mart while getting a small piece of flannel cut to make a small "lovey" for Ella, I shared with the girls at the counter what I know. They responded back that they would pray for us. I love to testify of my Savior and especially this miracle we are a part of. May the Lord be with each of you and bless you all.
UPDATES on our miracle girl: yesterday, Nov. 7, she was almost put back on the ventilator due to many apnic episodes. Her dr. decided to ride it out, upping her caffeine and monitoring her closely. By evening, she was doing much better. Because of this, I have not been able to hold her. I held her last Sunday for the first time, and again on Wednesday. She is up to 1 lb. 12 oz. She is receiving my milk through a feeding tube (4cc- almost a teaspoon every 3 hours). She is tolerating it well so far, and making lots of poops and pee. She is considered by her nurses and resp. therapist to be very fiesty. We like it that way. She tries to shake the CPAP out of her nose and doesn't like being tightly wrapped. She gets her leg out every time. She was started on another antibiotic just in case she is developing an infection, which may be a factor with the apnea. Keep those prayers coming. We thank you all for you love, friendship and support.

Wednesday, November 5, 2008

The Mommy Teacher

This is where it all firstborn, Sam. He got me rolling as a mom, teaching me so much of the things I would need to continue being Mom to our little fam. I can not believe it has been 12 years since that quiet, body building looking observer of a baby came into our lives. He arrived checking the world out...not a cry. He has continued to observe the world around him cautiously. I love his spirit, dedication, testimony, example, humor and all around goodness. He's # 54 on the Sumrall Bobcats Pee Wee football team. He loves the game...learning the rules, watching the game, and especially playing it. I was nervous to let him play, but I LOVE watching him. Pride oozes from every part of me as I watch him tackle and hold back those other boys.

Sam is a bit of a reserved, shy guy, so I love watching him totally get into this game (he's the one on the right in blue pants "hugging" the boy in black pants). I don't want him to hurt anybody, but I enjoy knowing he's doing something he truly loves. He seriously asks for so little, so I'm happy to watch him having such a good time. Being a part of this team has brought a new found confidence and maturity in him. Although my heart aches that he's growing up so fast, I beam with mommy pride as I watch him growing into a wonderful young man.

We celebrated Sam's 12th bday with grandma and gramps by taking him to his favorite restaurant, Outback Steakhouse. Watching Sam eat is another thing I truly delight in. He has some diet restrictions due to a health issue, but when he treats himself and dig ins, it does my heart good. He ordered a bacon cheeseburger (half a patty), cheesefries, root beer and finished with a spotted dog sundae. We had a fun night out together as a family. We needed to get out and celebrate. Since Sam was a baby, he and I sang this song we made up together. I guess it's our "I Love you Forever".
Sam is my baby; Sam is my boy.
Sam is my buddy; He brings me such joy.
Sam is buddy; Sam is my friend.
We'll always be together- forever 'till the end.
Happy Birthday, my not so little 'little man'. Thank you so much for all you continue to give me. You are a beautiful spirit. I am in awe of you so often. Thank you for getting me started on the right foot being a mom. I couldn't have done it without you. I love you all the way around the world. Keep being who you are. Shoot for the stars. Trust in the Lord. Be happy. Laugh often. Cry as needed. Be thankful. And please always stay my buddy-forever 'till the end.Love, Mom.

Sunday, November 2, 2008

Happy Birthday, Ella!

Wow. It's hard to believe that it has only been one week....and wonderful that it has been one week and we've come so far. Ella celebrated her 1 week birthday yesterday. Hilton and I went to the hospital together, hoping to possibly hold her. Because of some apnea episodes earlier in the day, we were unable to do skin to skin, but I got to "hold" my girl for the first time. It was unbelievable. She is such a miracle. I know that many prayers and much fasting have taken place in her and our families' behalf. We feel it. We truly know we are right in the middle of a miracle. I am blessed. Updates....she has a heart murmur due to an open valve in her heart. This is common. We are just watching it to see what it will do. Dr. Stewart mentioned starting her on some medicine that may close it, but he is not sure when he will decide to do that. Saturday morning, she had to have a spinal tap...YUCK! We weren't thrilled to hear that, but the results came back... no infection, so she was taken off the antibiotics she had been on. She was receiving my "miracle mommy milk" - 1cc- every 12 hours, but now it is every 8. She is doing poops and wet diapers and has good bowel sounds. All the tubes which were in her belly button are out. She now has one PIC line in her arm. These are HUGE things, by the way for such a little, early one. She is defying all the odds. A miracle, I tell you.
Look at her teeny tiny hand. I loved it when she grabbed my finger. She loves to hold onto things. I get totally nervous when she has one of her tubes in her hands. Right now, she has the CPAP in her nose. This blows puffs of air to "remind" her to breath. She is still off the ventilator...amazing! She also has a tee-niney feeding tube she likes to hold. I get antsy when she has it, but her nurses say she's not strong enough to pull it out.....yet. I know she will. She is a tough cookie. She's a half Latina/strong Pack I was eating Hot Tamales candy every waking minute of this pregnancy. I think it gave her some spice and fire!

Look very closely. Her eye is open. That just happened yesterday (Sat, Nov 1). They told us any day now it could open. Her right eye is trying but it is not completly open yet. I wondered if that cutie patootie one eyed bandit recognized her mommmy as I peeked at her. I think so.

Drum roll, please.......I held my baby today!!! It was her birthday yesterday, but I got the ultimate gift. When her angel nurse, Ellen, placed her on my chest, it was seriously THE most wonderful feeling ever. Hilton and I brought the kids for a visit after church. After we took turns taking them in to see her (only 2 visitors at a time), Ellen asked if I was going to hold her today. Uh, yeah...can I? was my response. Hilton took the kids to the waiting area and left me to be with my sweet Ella. We snuggled for at least an hour. It was magical. The respiratory therapist, Faye, said she was breathing so well....she must like being with Mommy...yeah, of course she did. We both loved every minute of it. I never anticipated getting to hold her this soon. As long as she is stable, I can probably do the "kangaroo care" every time I go. So, as soon as I get up in the morning and get the kids off to school, Sophie and I are headed to the hospital for some snuggle time. I didn't want to let her go or leave today. I sang to her, talked to her and mostly took it all in. It was THE ultimate! I am so whooped! We all love that girl something fierce! Thank you to all of you who are praying, fasting, thinking, etc.. for her. I know the power of prayer is real. I KNOW my Heavenly Father loves me and my family. I KNOW my Redeemer lives. I have been carried and know I will continue to be comforted and guided through this modern day miracle. Keep those prayers coming!!! Love to you all!

My little family

My little family
This is my beautiful, little family- Hilton, Emily, Jack ( 7), Sophie (4), Maddie (9) & Sam (11). Aren't the azaleas gorgeous? This was taken Easter sunday at my mom's house. The dogwoods and azaleas were in spectacular bloom.