Well, too much time has passed since I last wrote, but I did update face book during my absent time.
Layla is finally home with us permanently. She was released on Oct. 26 and we returned to the hospital on Nov 9Th. we only stayed for a week, but it seamed like a much longer time period. So much has happened for her. where to start.
Layla had some issues with her intestines while in hospital. we found out that her Biliroubin count was abnormally high. With caused a back up in her liver and pancreas. This could have caused some of the symptoms, but we are still not sure. Her liver seems to be correcting itself. She still had some irregular bowel problems.Nothing severe enough to cause us worry.
her eyes seem to be getting a bit better. She still goes to a specialist for an eye exam. So painful for her but very necessary. She will be tracked for at least 18 more months.
She is 5 months old now weighing in at 8lbs 6oz. and 21 inches long. She has doubled her length and quadrupled her weight. She sleeps through the night and stays awake most of the day. She is smiling and cooing. She seems to be catching up to her 5 mo old full term counterparts. She can lift her head pretty well and roll over at times. 5-7 mos is when we would expect her to sit up, but I think she has a way to go. She is testing out her hand eye coordination. She reaches out and grabs hold, but at the same time she has an infant clench and feel secure swaddled up.
She is still on several medications and along with those come side effects. Irritability, diarrhea, and drooling. Not fun all the time but manageable. She is the joy of my life and consumes all of my time when she is awake. The children have taken to helping hold her because Layla does not want to be left out. Miguel walks around with her. Gabriel feed her burps her,and keeps her at bay while I make dinner sometimes. The girls sign to her and distract her while I get dressed. Daddy still doesn't feel to comfortable staying with her just yet. It is a lot off work and she is used to a certain routine of things.
We all seem to have adjusted to having a high maintenance baby around, and it seems like it was meant to be this way. She is a happy baby, beautiful, smiley baby.
We still have our concerns for her cognitive development, motor skills, and health. We pray everyday for her to be able to over come her health issues. Our children are our life and right now some of our everyday routine have been put on hold to care for Layla. Though the kids don't mind, we as parents would like to get to a place where we can resume normalcy.What ever that may be.
We have appreciated all the prayers sent from a far. with out faith we would have been destroyed. This by far has been the most difficult experience to date to go through. Me and Hailey spent hours on end at the Hospital bringing milk and pumping. I spent hours on end just wanted to hold her. Towards the final weeks I spent 10 hours or more just to feed her.I knew I needed to be there but not with out feeling like I had neglected my other children. My older ones always told me, go to the hospital mommy. we know you want to see Layla. It was true, all I wanted to do was be with Layla. I couldn't focus on anything else. I though she would never come home. people at the hospital thought I worked there. I was there everyday by 8am, I ate there, I slept in my car during shift change, and I learned as much as I could about all that was going on with her. There were times when I cryed while holding her, because I did really think she knew me. There were times when I didn't want to leave because i thought I would miss something. I received calls in the middle of the night, that were not so good. I waited on calls all hours of the day, now that I think of it. My husband and I were totally on polar opposites. He allowed me to go thought his a suffered alone as to not worry. Thank God for family and friend who called me daily to see that i was still showering and brushing my teeth. I was losing alot of weight and sabotaging my milk supply in the process. It was just not a fun time for me these last few months.
I'm here to say that I survived! It's not about but I feel like I won a Small battle. She is home she is thriving and she is all mine. All the time I spent over in the NICU was well spent. She knows me very well come to find out. She remembers my touch, my voice,my smell, and my heart beat. She is very calm when I'm near her. we have an understanding. I will not leave her, unless she is asleep, or in good hands. So far Ive not left her too many times I feel more at ease taking her every where I go. I felt so incomplete without her, there is no use trying to be apart anymore than we have to. She sleep a foot away from me, I wake up with her, I administer all medications, I keep up with all the Dr. appointments, and I make sure she is as happy and as comfortable as can be. Daddy helps by taking kids to school at 6:30 am and fetching them at 2:30pm. This way I can stay home and keep Layla on her own schedule. Hopefully soon we will be able to venture out with her. We will give her as much time as she needs to adjust to being home. She is a fine travel companion once she is asleep, but if she is hungry watch out....definitely a ROLDAN in there.
until next time everyone, Have a Happy Year!
Loving my sweet Layla, at home....

September

More picture. I said I had a bazillion....

September 30th

More pictures.

September 30th

Layla took a few steps backwards this week. She was becoming bloated again and they took her off of her feedings. They put her back on her oxygen and had to put another tube in her stomach to relieve some gas. She also had an IV out in to give her fluids while she was not eating. That got moved from her foot to her right arm then to her left arm.She is pretty bruised up right now.
Last night around 8pm they resumed feeding her,but only 10 cc. All last night she fussed and cried. The nurse said she was screaming at one point and they could not settle her down. I arrived by 8am and she had just stopped crying. She was on her way to la la land.
The doctors made their rounds and increased her feedings to 15cc and added another IV drip of lipids. They were adding calories to her food but this is most likely why she keeps getting bloated. So as we experiment with Layla's intestines, they will eventually figure out what the correct amount is that her little belly can handle.
I'm really trying not to get upset when things like this seem like they can be avoided, but it is becoming difficult. Who wants to find out after the fact that their baby was inconsolable all night long? I'm getting a bit upset because, this is not how I would care for her if she were at home.
I know she still has a way to go. She may need to go home with Oxygen. I know she may need to gain some weight. There is one thing I know more than anything, she will not be crying ALL night long.
That being said. I did get to hold her and tell her I loved her. They moved her to another section called the Special Care NICU. She happens to be right by a window, so my family can actually see her very well through the glass. She looks much better in person. This is so convenient when all our own children want to see her real quick. Like after school or on the way home. Of course that would never do for me, I am way too greedy. I need to feel her, touch her, and smell her.
Tomorrow I will spend most of the day with her so I can see for myself just whats going on. Is she really crabby or just lonely? Enjoy the picture, because I have a bazillion of them!
Love and prayers for my Sweet Layla
Kathleen

September 27th

Wow has it been that long? Layla has been doing very well for the most part. She has conquered many battles. She is in the special care unit, which is a progressive step towards going home. She has gained so much weight. She is up to 4lbs now. She is eating a full ounce and more. She has started bottle feeds and next we will introduce ME!(breast feeding) Unfortunately she has had a few set backs along the way. Today she was tested for an infection so we are waiting for the results to come back. She had already had another blood transfusion, and may need another one, if there are signs of infection. She had been taken off of her oxygen completely for almost two days, but has since resumed her oxygen. All this growing and feeding is getting her all worn out. So we are going to see what will happen next with out Layla. Her vision test have come back with some mild abnormality. Although this does not affect her vision it would affect her peripheral vision. So we wait until next week to see those results. Over all she is doing very well. She is still tiny and very active. She gets a visit from Mommy everyday as well as big sister Hailey. Every Sunday we still bring the siblings to see how much she has grown through out the week. We are very anxious to bring her home but not before she is ready to come home. We pray that she can recover quickly from her infections and keep growing strong. So many arm are waiting for her when she finally makes it home. Thank you everyone for continuing to pray for her and our family. We need it!
Prayers for my Sweet Layla
always
Mommy

PS pictures next time

September 12th

She waves, she wakes, she stares at her mama,and sleeping beauty will sleep!
News News News! I know I have lots of it. Layla is still doing great, she is 3lbs 3oz. She is almost 16 inches long. She had her first vision test. She has some abnormal development in her eyes, but this is expected for her gestational age at birth. They will follow up with several more vision test.They have lowered the amount of fluid for her oxygen to half of what it was. It is now 1 liter. So this is a progressive step towards breathing on her own completely. She has increased her feedings to 25cc every three hours. Almost a full ounce. She now has her feeding tube through her nose, so this leaves her able to suck her fingers, and hopefully soon ,a bottle.

The children have been wanting to go visit more often, I know that they are all missing her in different ways. They all have their own concerns for her. They all have questions about her health. The girls can't wait to bring her home to wait on her. Miguel can't wait to hold her and love her. We are all anxious to hug and kiss on her. The nursing staff is very accommodating in that sense for the children. They bring down the bed and take down the side so they can get as close as possible to Layla.I'm a little spoiled right now because I'm the only one getting to hold her and kiss on her.

She is steadily gaining weight now. She jumps up so quickly and you can definitely notice that she is filling out. She is starting to look a little plump. She is still so petite. Her face is changing and she is beginning to look allot like the other girls. Beautiful and Angelic. Her hair is growing and so are her finger nails. Upon breaking out of the NICU, Aunt Barbara and I will take her for her first manicure and pedicure for sure.

I know soon she will be able to maintain her body heat so we will need to bring some cloths for her. Not a shortage of preemie cloths in my house, but definitely can't wait to go buy some.I know Grandma has been shopping since we gave birth, so hopefully I won't have too much trouble finding some cloths that she hasn't already bought.

Our weekends revolve around the hospital, with the kids. They are anxious all week to go see Layla. Me and Hailey go every day after we drop everyone off. I do wish there were more hours in the evening so I could spend all night with Layla and not have to worry about not getting enough sleep. I'm finding that my balance is teetering on a small fine line. I have always been able to juggle all the responsibilities of having a large family. I admit it is not easy. I really have to stick to a schedule with all that is going on, just to stay focused and not get too stressed out. I'm dealing with the sadness from not having Layla at home much better these days. When I can't spend enough time with her though, it still hurts. It hits me in waves and,it goes out with the low tide(sleep.

We pray everyday for our little angel, because she is still fighting. She is so strong and so determined to do what she wants. We are all so pleased with her progress. We have been very blessed,not to have too many set backs. We keep waiting for the downs of her condition, pleasantly, we have not had any serious ones yet. We thank God everyday for her life. We know just how close we came to not having it at all. So far this has been the hardest thing I have had to deal with in my life. I just want to say, thank you God,because I'm still coping, functioning, and I'm accepting anything that comes my way after this. This is my revelation, having given birth to Layla...Without strength you can not endure, Without endurance you can not know how strong you are!
Love and prayers for My Sweet Layla
Kathleen

September 3rd

Today Layla had another ultrasound on her head. They are still watching to make sure the swelling has stopped.They will keep doing this until all the blood has drained from where it was pooling. They will still fallow up with a MRI. We will find the results out any day.

She looked great today. I spent about two hours with her this morning. I held her for almost the entire time.I sat I prayed and I smelled her. We tucked her right inside my shirt so she could have kangaroo care.(skin to skin contact) It's very nice, but you can only see the top of her head. She gets herself snuggled right between my breast. Where she slept for almost an hour. The last 40 minutes she fussed about. She needed to stretch out,so it was time to move her back into her bed. She laid there for awhile and looked around. She got comfortable very fast, and of course feel asleep.

It is so very hard to walk away when it's time to leave. I think I'm going to have some separation anxiety issues when this is all done and over. I know I won't want to put her down or have her out of my sight. I plan on spending every possible moment with her when she comes home.

Gaining weight is her biggest hurdle now. Once she gets some fat on her she will pick up the weight a lot faster. Homecoming for her will depend on how much she weighs eventually. I can't imagine she will be much more than 5 lbs when I get to take her home. Who knows that seems so far off right now. I want the time to go by faster, but I don't want to miss out on her growing up. She might be three or four months old before we can bring home our NEWBORN baby girl. When that better day come we will be ready with balloons and flowers like I just had her. That day will mark the beginning of her life with all her brothers and sisters, who can't wait to have her home.
I'm hoping that by Thanksgiving we can celebrate and be thankful for just life in general. Her life, our lives, our family, and God almighty. Who, with out him, I would crumble and fall to pieces. I would not have the strength to wake up or move from my bed. Since I know that God has control of everything, I walk, talk, function, and I have faith.
Prayers and love for my sweet Layla
Kathleen

September 2nd

Well this is a new month for our baby girl. She is doing a fabulous job at growing! She continues to fight her way forward. She is looking pretty healthy compared to when I gave birth almost five weeks ago. She is feeding every three hours still. She is almost up to a full once of breast milk. She continues to digest her food and gain weight. She makes frequent poo poo diapers. For someone so tiny and so sweet she sure can have a big stinky diaper.

Layla has been moves around quit a bit in the NICU. Sometime when I go in there to visit I have to ask" has anyone seen my baby"? I can't say Layla because there are three other beautiful baby girls in there with the same darn name! Not spelled the same of course. Her next goal is to move into the special care nursery. She will still be in the NICU, but she will be special. I already new that she was special, but I guess it would then become official.

I have been able to hold her every time I go to visit. So far every day.I get to hold her for longer periods of time as she gets bigger. At first she was over stimulated so her heart rate would shoot up or drop way down. Now when I hold her she is stable. She gets stimulated but she seems to readjust. She is almost five weeks old and although she is really only 31 weeks, she does smile at you. She makes all those cute funny faces that just melt your heart. She stretches and farts and it just cracks me up. It takes so much effort to do these things, she get pooped out and falls into a deeper sleep.

It really is amazing that she is doing as well as she is. Hailey and I visit in the morning after we drop everyone off at school. We can't stay long because Hailey gets a little sad, she is not sure what to do there. She got to touch Layla the other day and right away she said she has a boo boo. She grabbed me and said let's go now momma. What can I do?

I still visit everyday. I feel so sad that she is all alone. Sometimes when she cries I know she is unattended and that thought is enough to make me crazy. I want to hold her all day and night if I could. I want to do all the things that a mommy should be doing right now. It's so very frustrating. I'm upset that she has to pacify herself. Who will make silly faces and speak in silly voices to her? Will she remember that she was left alone for an ungodly amount of time just so her life could be nourished? Will she know that I was there everyday? This goes through my mind everyday all the time. The nurse explained to me that she is in a dream like state and that most likely she will have no memory of this experience. I just pray that she is having the most beautiful sweetest dreams right now.
Prayers for my Sweet Layla always.
Kathleen

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.........