Aug 25th

Layla is doing so good this week. They took her off of the sipap machine which helped her by blowing oxygen into her nose periodically. Now she does this completely on her own. She just has an oxygen hose around her nose. This gives her better mobility, too. She has really done a great job remembering to take breaths all by herself. They still have to give her caffeine to help stimulate her brain to keep her breathing. The nurses and doctors are very proud of little Layla. So are we.

She continues to consume milk. Now they are adding calories to the breast milk in efforts to help her gain weight more rapidly. She is up to 18 cc every three hours. I have to try to keep up with her now.  I have been bringing her food supply everyday now. My little piggy grows hungrier everyday. For someone so tiny, she sure eats a lot.

She has been awake a few times when I have gone to visit. She just looks around and tries to be nosey. Angelina came to visit with me today. Layla turned her head completely to the other side when Angelina started talking to her through the glass. I know she is aware of our presence. She doesn't want to miss a thing, just like the rest of the Stiegler girls. Now that we can see her face more clearly, I am amazed at what a beautiful baby she is. I thought she was so cute before, but beautiful doesn't do her any justice these days.

The nurses tell us to hold her twice a day. I got to hold her yesterday. I love those days. It really keeps me together. I feel her heartbeat against my chest, and it is music to my weary soul. She clams down when I hold her as she sleeps. I could hold her all day long if they let me. We still have to ensure she can maintain her body temperature, so I cannot hold her for more than an hour. It's really the best hour of the day...until I hold her again!

Friday they will scan her brain again to check on the brain bleeding. She will get her blood tested to make sure it is producing red blood cells. If not then she may need another transfusion. Preemies can not do this as their bone marrow is not mature enough to handle this responsibility. So we hope and pray that if she needs it, it will go as smoothly as the last time.

Love and prayers for my sweet Layla

Kathleen

I feel an inner struggle

that takes a hold of me

The sorrow and the pain

I want to set it free

I can't explain the emptiness

It grows deep inside

It over takes my every thought

It makes me want to cry

I hold my thoughts inside my head

they try to slip away

I focus on containing them

It's a battle every day

Some days are battle free

I go on, without a fight

I manage to function

but it's not a pretty sight

I'm exhausted and worried

I feel torn apart

I pray every day

Yet I ache inside my heart

The love that surrounds me

the hope that I have

It pulls me to a better place

some where not as sad

Aug 20th

Today I got to speak to the doctor about Layla's brain scan. She said that there is not any new bleeding and that the blood is clotting so it can eventually drain. There are three ventricles in the brain, and the one in the middle is where all the blood was pooling. The blood needed to drain in order to relieve pressure on the brain. This is such good news, but we will still need to follow up with brain scans until all the blood is flowing normally around her tiny brain.

They have been increasing her feeding by 1 cc every 12 hours, so she is now up to 12cc every 3 hours. They have her on a feeding machine that regulates the flow of food for a period of 1/2 hour. This will give her tummy time to adjust to the larger amounts of food that she is expected to consume. She is able to digest all her feedings, so they will keep increasing until she gets to about 18cc. They will then gradually increase at a slower rate.

She is gaining about 10 grams a day and sometimes more. She is still looking a little skinny for right now, but I know it won't be long before I notice her body plumping up! I can't wait. They tell me it will be at least another 6-8 weeks before I can feed her from my breast. It shouldn't be long before I am able to feed her from my arm.

Layla stays awake when she is getting her diaper changed and temperature taken. She opens her eyes and looks around. She can move her head, so she is super nosey. She hears my voice, and I know she can tell who I am. Once she has her milk, it's all over -- she settles down and goes right back to her peaceful sleeping that she does for most of the day.

Layla is known for being quite fiesty. The more she fights, the better she will be. They tell me she will get stronger everyday, but I still have to see it to believe it. I can see the most subtle changes in her because I go everyday.  I look at her pictures and think how awesome God is for allowing such a tiny little girl to grow and thrive outside of her mother's womb. She has come a long way in the 3 weeks that she has been here. I know it seems like time has just flown by, but I assure you I have lived every second of time that has past.

Getting through each day is a challenge, but I just do it. Leaving your baby in a NICU bed is a fight from within I care not to do, especially on a daily basis. Leaving Layla everyday is the hardest thing to do. Some battles and struggles come with the small victories. She grows stronger and my will grows weaker. I know balance will come.

Love and prayers for My Sweet Layla
Kathleen

Aug 18th

Layla is having a blood transfusion today. She needs to replace some red blood cells. Since the red blood cells carry oxygen, this will help her. The Sipap machine that she is on is giving her oxygen, but her body needs to reproduce these cells on their own. This is normal for a preemie baby. The process will take a few hours. She will stop her feedings for the duration of the transfusion and won't resume until 3 hours after. She has been doing very well, and they increased her feeding amount to 7cc every 3 hours. She has been gaining weight and is up to 2 lb 4oz. The nurse said she really is doing an amazing job outside the womb! Sweet Layla is such a fighter. The nurses have to weight her down so she won't pull her breathing mask off. Tiny as she is, she is very willfull and determined to do certain things.

I hope that she can recover from the transfusion without any complications, but there is always a risk of infection. She seems so content lying there all day lounging around...as I sit there in complete wonder as to what God has handed me. I feel extremely blessed for this privilege, but it is not without reservation. Can I handle this? Can I provide everything she needs now and in the future? Can I juggle all the other children I have? Will anyone feel neglected or deprived of attention from me? I have had these feeling with all my other children, but it seems so much more important right now that I am able to deal with all that is going on. It's not easy to walk in my shoes right now, but walking is what I will continue to do...until I need to run!

Love and Prayers for my sweet Layla
Kathleen

Just for Layla

Who will hear your cries
Who will settle you down
Who will watch your sighs
Who will watch you frown

Who will rub your nose
Who will whisper in your ears
Who will tickle your toes
Who will know your fears

Who will kiss your tiny lips
Who will stroke you hair
Who will measure your finger tips
Who will know your there

God is with you all day and night
He will hold you in his care
He will give you strength and help you fight
Until your mommy can be there

Aug 15th

Sweet Layla is doing so well. She continues to breathe with the help of a sipap machine. She seems to handle this very well. The respiratory therapist said she really is doing very well for her size. I know my baby is a fighter. It just pains me to see her the way I do: through a box where she can not feel my touch or know my scent. She still has bleeding in her brain, but no new bleeding. They are going to do another scan on her brain next week. They are waiting to see if the body will reabsorb the blood. If not, I guess we will find out what the next course of action will be. I try not to get to far ahead of the daily events, otherwise I will just go MAD!

I have been able to spend more time with her. Although she sleeps through most of our visits, I rather enjoy our quiet moments. I get to listen to her heart beat, take her temperature, and change her diapers. Every now and then they let down the side so I can touch her and place my hand over her body. She can hear me for sure, as I sing to her and pray for her. I tell her about her siblings and all they are busy with. She is a very active baby already and reminds me of her sisters. I can't wait to hold her again. I was absolutely content just holding her.

The children have been able to visit her once a week. This doesn't seem to be enough time because it takes so long to get everyone in and out. I know they are starting to miss her and want her home. They may not understand everything that goes on with her, but they worry just the same. We try to be as positive as we can when we visit, and the nursing staff help us make their visits most enjoyable.

We are coping the best way we can. I miss my baby terribly. I think holding Layla has helped ease some of my distress, but it's not normal to be separated from your baby. I have never had to deal with those emotions before. Just seeing her everyday does not alleviate the pain of wanting to hold her and keep her snuggled close to me. I'm nursing a pump when I should be nursing a baby. That is really the hardest for me. I can only watch as they push through a tube what takes me 30 minutes to produce. Today she got to taste the milk. The nurse put some in her mouth. She smacked her lips together and stuck her tongue out looking for more. Can't wait until she learns how to nurse from mamma.

Today like everyday has been a good day. She is breathing and her heart is beating.  She grows and matures into what would have been her 28 week and second day of gestation. She has a long way to go before we can get too excited, but we are truly blessed by her very existence. Thanks to God, prayers, and all the love she has going her way. As my grandmother would always say "with the help of God"  she will be home soon.

Love and prayers for my Sweet Layla

Aug 12th

Sweet Layla we hit a speed bump yesterday.They had to resume photo therapy and stop her feedings. They initially started with formula until I could bring my breast milk in. I think it was a little harder to digest so they gave her tummy a break. Today though,She did resume feedings. Miguel caught that on film. He was a little shocked that she only got what looked like drops of food. 1cc is what they started her with and they will feed her every 3 hours and increase the amount a little at a time. She was not digesting all the food and some of it was coming back up the feeding tube. Her intestines looked clear and what little she did digest made its way out. All in the tiniest form of a poop.We also got to change her diaper. She is still developing so there isn't much to wipe down there. Miguel got some great pictures of her tiny little booty.
She was not to fussy when I showed up today,so they let me hold her. I couldn't believe it when they told me. I was so overwhelmed with emotions that I just sat there as tears ran down my face. Both the nurses started crying as well. I can only imagine having to witness a mothers first touch over and over...It must be very rewarding. I had just been handed the most precious gift in the world.I sat there for a god 15 minutes just soaking in her smell and touching her head. Her body lay there perfectly inside my shirt. Like we were meant to fit together. She lay there so still and so at peace. She slept in my arms like she would normally if she were at home. I felt robbed when they had to take her and put her back in the incubator.It was not a good feeling to let her go. I struggle with being separated from her. It's an empty feeling. It's so very painful right now. How can your brain know it's only temporary, when your heart feels like its destroyed the moment you are apart? I know that this experience has changed my perception of many things. Life is a gift. I can wait patiently to take mine home.

August 10th

Sweet Layla is doing so well. Early this morning I finally went to see her again. She was very busy yesterday. She has increased her feedings to every 3 hours.  She is getting only breast milk now ( yeah!!). She is still off of the photo therapy. She is maintaining her weight. She should start to gain some weight soon. The great news is that she has been taken off the ventilator and put on a Sipap machine. This is a oxygen mask that fits over her nose and shoots puffs of air through her nose. It is attached to a tube that is held in place by a very funny looking hat. Her nose is all pushed up like a little piggy. She is still moving around more than necessary so she still gets sedated to keep her calm. We really don't want her to use up any energy she may need to grow. We are waiting for the next head scan to see if the bleeding has slowed down or stopped all together. With all the movements she is making it is hard to imagine she may have some motor delays. I am very hopeful that the brain will heal itself. If she continues to breath on her own and have little stress doing so, we may be able to hold her soon, even if only for a few minutes, because she will not be able to maintain her body temperature. We are looking forward to that day when we can hold her so close to our hearts and she can just feel all the love we have been waiting to spoil her with. I can't believe how wonderful God has been to us. She is pulling herself along with all the difficulties and she shows no signs of weakness. The strength she has can only come from God. I feel so at peace when I am with her. I really miss her when we are apart. Even though I have six other children to love and take care of, I feel like a huge part of my heart is missing. I pray for her every night and know she will endure this battle. I know the time will go by fast. I thank God for my family who just pour love onto us all the time. It will be a good day today.

Love and prayer for my sweet Layla
Kathleen

August 8th

Sweet Layla, she has been doing very well. The hole in her heart has finally closed up with the help of the medication. Her gasses in her intestines has worked itself out. She is now able to take in food. They are feeding her every five hours. She has had her first bowel movement so this is all great news for her digestive system. Here bilirubin counts continue to fluctuate so she will be on and off the photo therapy. The ventilator that she is on allows her to breathe on her own. She is breathing regular air  (the same concentration as we do). She is breathing about 5% on her own; it's a start. Her skin is healing up very well. Since it is so sensitive it breaks down very easily. We try not to rub her skin. We have to touch her and gently put pressure on her. She moves so much that she has worn down a good size rash on her tummy, but with the antibiotics it has healed up. She is extremely active which is great, but sometimes they need to sedate her so she can just sleep and grow. The scan she had on her brain did not come back with good news. She had some bleeding on the right side before, and it now appears to be bleeding more. They tell us it's a good sign that only one side is bleeding, but either way it seems not good at all. They will do another scan on Monday to see if the bleeding has increased. She could develope some long term problems from this excess bleeding, so we are praying that her tiny little brain can develope normally without damage. We visit everyday and sit with her. I just want to watch her grow. I already feel like I'm missing too much. She should be able to gain some weight now that she is eating. She is 1lb 14oz and as strong as ever. She seems to be adjusting much better than myself with the outside world she lives in for now. I long for the day when I can hold her in my arms. I see my reflection in the glass when I'm looking in on her. It's an empty look I see on my face.  I know one day there will be a happier me on the inside...but for now I'm sad.  I'm hopeful, but I am sad. My Layla is sleeping somewhere other than with me.

Loving and praying for My Sweet Layla

Aug 5th

Layla is doing very well today. She will start her second round of meds in an attempt to close the valve in her heart, which would close normally in full term infants. (Did not know that). She was off the photo therapy for a full day, but she will resume the sun tanning lights because her counts have gone back up. She was taken off of one of her ventilators so she is now on regular air. The machine she is on encourages her to take some breaths on her own. She was lying on her tummy today and lifting her head up. The nurse said she is very active. She seems to be trying to grab hold of the tubing. I think with all that she has going on she is really thriving . I keep prayer over her, I sing to her, and I touch her as much as I can. It really is difficult to leave her and go home. We are starting a diary for her. All the kids want to tell her what's going on. I'll take it to her and read to her, so she can know all her brothers and sisters. I'll bet it will make for an interesting tale once she does come home. This will be something we can give her when she is old enough to read.She can see just how well she fit into our family and how no one wanted her left out of anything.

Love and prayers for my Sweet Layla

Kathleen

Aug 4th 2010

I am amazed at what God can do. I have been witness to a miracle. This is my true testament of the beginning of my journey with Layla. Although she has come into this world on unstable conditions, she will have her place here on this earth. She is a strong-willed baby. She leaves us uplifted and overjoyed with her very existence. I have the privilege of witnessing such a spirited soul. I have six other children who are equally amazed. They look to God, and without asking why, just pray that it is His will and desire to keep her here with us. They wait in joyful anticipation of any news. We try to stay focused on what is important. Right now we are praying that she can endure the road ahead. We will hold her in our hearts and keep close in prayer. Every day she is here will be a good day.........