These are the days ....

..... they warn you about in the beginning. 

WOW. These last few days have been extremely happy and extremely sad. I almost don't know where to begin because the sad almost outweighs the happy. 

Friday: Friday was a great day. I had been a little down in the dumps with minor things happening with Luke. To be honest I can't remember what they were now because like I said they were minor things in hindsight. My sweet cousin in law took me to lunch and we had a great afternoon together. I think she and I may be kindred spirits. She really made me feel much better. She took me to the hospital and the nurse let me have a whole afternoon of Kangaroo care. 

It was amazing. Luke and I bonded for almost two hours. Isn't it funny to think of that? I get so excited about a two hour bonding session with my baby. It's very surreal. I just want to bring him home with me and be Kangaroos all day and night together. This Kangaroo care felt different from the first one. It was very soothing. I finally felt maternal. I felt like a real mother to my son. He laid over my heart and nuzzled me for two whole hours. It was so comforting to feel his little fingers grasping at my skin and feel his little toes wiggling against my chest. The nurses kept commenting on how amazing he was doing - he was holding his body temperature so well, in fact he was actually getting hot so they took his hat off and he was able to lose one blanket. I felt he was very content - I could actually feel it in my own body. I didn't want to give him back. 

The minute they took him away I could feel my heart breaking a little. I think this must be what they mean when they say premature parents never take moments for granted in their child's life. I can't even fathom how it is going to feel when Luke comes home with me and I can hold him ANY time I want to and AS LONG as I want to. I know I am going to be so selfish with him - and I feel I deserve to be.

Mommy and Daddy had a little adult time on Friday night - we went to our friend's house and had dinner after we visited with Luke in the hospital. It was nice. It was good to interact with someone outside of a hospital. Another surreal moment - the first time you go out somewhere after giving birth and not have your baby with you to show off. You know you are a mother but don't feel like it because your baby is being taken care of by someone else. 

Saturday: Luke had Grandparents day - my mom and dad and Scott's parents visited. It was very nice. Saturday wasn't all fun though - we got the results of Luke's second brain scan and the results were not what we were hoping for. The scan showed no change. Not bad news by any means but not the news we wanted either. The doctor said they would repeat the scan in one week and keep monitoring the progress. Luke was progressing very well with his feedings. He was almost to the max for his age when he was taken off feedings Monday. He also had the humidity taken off his bed because he was regulating his own body temperature. The nurses just couldn't believe his positive progress. I personally think it was from his Kangaroo time on Friday. It's very good for their development as well. I was starting to be more hopeful of this situation. I started to be somewhat content and accepting of the fact that my child was born prematurely but he will make it just fine. All he needs to do is grow. 

Sunday: Scott and I had a good day Sunday with Luke. We went to visit with him and he was having a really good day. We went to the store and got him more blankets for his little pod home. Mom actually slept a little - things were starting to become a good routine for us. Luke was such a happy baby all weekend. He was very active, had his eyes open a lot and was actually following us with his eyes. He was a happy baby given the circumstances. He looked good and acted like he felt even better. Mommy and Daddy were very happy. Luke was showing great progress. He had all of his IV's out except for one central IV for labs. He was off all fluids because he was tolerating his feeds so well and his PICC line was removed since it was a delicate line and could be a source of infection. 

Monday: Like usual, Monday started like every other weekday. Scott dropped me off at Northside before he went to work so I could spend the morning with Luke. When I got there I had a weird feeling about Luke. He wasn't opening his eyes much and when he would open his eyes he wouldn't look for me. He also wasn't very active - for those who have been lucky enough to meet Mr. Luke you know how constantly active he is. He is always kicking and moving his hands and arms around. But he wasn't doing any of that Monday. I also had my first meeting with the preemie counselor Monday. She was a very nice lady and she really helped me. She told me we could have weekly meetings together to talk about everything. But afterwards I felt a little distant because I had opened up so much to her and it was hard for me to express everything I have been feeling for the past two weeks. I just wanted to be with Luke alone. 

When I got back to his bedside the nurse said his vitals were looking a little out of the usual. She had called the doctor to let her know what was going on. I didn't have a good feeling almost immediately. I didn't think it would turn out to be as serious as it did, I just thought he was maybe sick with an infection and would get better with medication. Within 30 minutes of the doctor checking him things got very scary very fast. When I went to look at him I noticed his stomach was very bloated and didn't look in proportion to the rest of his body. I was getting very worried so I let Scott know and he was there immediately. The doctor said she suspected it was a common illness most preemies get but that further tests would be run and that they would know more as soon as possible. 

Scott and I went home until after shift change and went back up to Northside. The baby laying in that incubator when we went back that evening was not my baby that I left 3 hours earlier. Luke's stomach was so swollen and purple that I almost passed out when I saw him. He was lethargic. He didn't move at all. Luke had been suspended from feeding, hooked back up immediately to all of his IV's and X-ray'd in his abdomen for the source of his illness. The doctor diagnosed him with NEC -Necrotizing Enterocolitis - which is a disease affecting the bowels of premature infants. She said that he was beyond help from Northside's stand (they don't operate on babies there) and that he would have to be transported to Scottish Rite immediately to be assessed by a surgeon. The words NO PARENT ever wants to hear, whether your baby is full term or premature. They called the transport from Scottish Rite and everything went so fast from there. 

He was given so much pain medicine to make him comfortable that he was like a zombie. It was the scariest time I have had with him so far - aside from his early arrival. He just stared at me with his beautiful eyes so full of pain and it broke my heart into a million pieces. Actually it broke my soul into. It was a pain you feel in the core of your body. He didn't blink, he didn't move his eyes, he just stared at me with the saddest face you could imagine. I have always read about this kind of pain. Gut wrenching pain that never feels like it will go away. Deep sobs from the pit of  your stomach that don't even touch the beginning of what you are feeling. That is the moment my heart was broken and it still hasn't healed. I am not quite sure if it will heal until he comes home to me. 

Everyone was so gentle and comforting during this time at Northside and Scottish Rite. I felt like I was drowning in anxiety and fear. I didn't know what was happening to my sweet baby and it was the most helpless I have ever been in my life. It was terrible. They set him up at Scottish and he was put on more pain medication, blood pressure medication, his ventilator settings were at the max they could be and his heart rate was 220 and above. My baby was suffering and there wasn't anything I could do to help him. 

God how I wished I was laying there, more than ever, and taking all of this pain for him. Because he was so sick and going so fast he was getting blood drawn every hour almost to monitor his activity. His electrolytes were haywire, his kidneys were beginning to malfunction and they could not stabilize him. I sat there sobbing while a number of nurses tried to help make my son comfortable. They gave him blood, they gave him fluids, they gave him medicine, they gave him platelets, you name it they were doing it for Luke. 

Around 1:30 am the surgeon came in to assess Luke. He said he felt the NEC was caught early enough to treat medically. He felt surgery was unnecessary at that point. That gave us a little relief. We thought our little boy will pull through this on his own and won't need any surgery. 

Tuesday: We went to Scottish Rite as soon as we could Tuesday morning. We knew Luke would be assessed again soon by the surgeon to see if the medicine was working. When we got there we learned his NICU pod had been shut down for the moment. This scared me very much - I thought what has happened that I can't be with my sick baby? We soon learned that a baby in Luke's pod was passing. 

The fear and sadness you feel when you hear that is one you will never be able to describe - and you hope no one would ever have to. I was so incredibly sad for that baby's family and so scared at the same time that it could be me at some point. It also scared me to be somewhere where that situation seemed almost normal. Not to make light of that baby's situation, I couldn't imagine and I don't want to, but while Luke was at Northside that just didn't happen to babies. I felt that a huge reality had just slapped me in the face - this may not be ok in the end. Things can go either way and it was the worst feeling in the world. You don't know every baby's situation or story when you come into a situation like this one, but you start to feel like every baby in the NICU is yours and you pray constantly for them like they are your own. So you feel other parent's sadness along with  your own. The bonds and friendships you acquire from something like this are truly amazing. 

When we were able to go be with Luke the surgeon came to assess him again. He said the X-rays looked the same but Luke was getting more sick and he couldn't figure out why. He didn't have all of the signs of NEC but he had the more common ones that indicate it's in the early stages still. While his tummy was so bloated, it remained soft and not hard. But everything was still going downhill, his breathing was plummeting and his kidneys were still acting up metabolically. He was still being checked around the clock when we went home Tuesday night. 

Wednesday: This morning we received a call from Luke's surgeon. He said that Luke needed surgery. It wasn't a life or death matter, they just wanted to see what was causing him to be so sick. I thought my world had turned upside down. How could this be? Just 5 days ago I had a happy baby that was content and I was having bonding time with him. Now I have a baby sick enough for surgery! 

Then Luke's Scottish doctor called with an update on his overall status and it was not good. During the night his arterial line collapsed and he lost a significant amount of circulation to his left foot. His toes had turned purple which indicated what happened to him to the nurses. The doctor said they weren't sure if they would be able to save his toes or not. More horrible news. We asked why this happened and she said it happens with arterial lines especially in preemies. I thought I couldn't get any lower. I laid in the bed and sobbed deep uncontrollable sobs from deep within. I couldn't believe what had happened to my baby in since Monday. 

Luke went into surgery today at noon. Scott and I were able to walk all the way down to his OR room with him. The nurses let me hold his hand before he went back. When they wheeled my Luke away from me for major surgery I almost lost it. I felt numb from head to toe. It's true that a mom will always feel pain when their child is hurting. I cried to my mama and she just held me and cried with me. It's definitely an incredible bond. No matter your age or circumstance your mother will always feel pain when you do. There I was crying in pain over my child and my mother was crying in pain over her child. 

Luke came out of surgery around 3:30 pm. His surgeon told us he did great during surgery. He also told us that Luke does NOT have NEC - thank you God for answered prayers! He said he had a blockage in his intestines from his meconium, which is the term for the baby's first poop. Poor man had been eating so much and not pooping enough to stay healthy. They did have to remove 1 cm of his intestines but that is much better than the outcome he could have had from NEC. The nurses were also very excited about the fact that Luke did so well during surgery. 

You could tell an immediate difference in Luke. He looked like he felt better and his breathing got significantly lower, almost room air!! Even though it will take a while for Luke to recovery since he is so small he is expected to make a full recovery. This time when my sweet baby looked at me I felt he was looking at me to say "Don't worry Mommy, we are going to make it together"! His eyes didn't look like they weer full of hurt anymore. 

Luke still has a long road ahead. In 6 weeks he will have another surgery to reconnect the intestines. I don't know what tomorrow brings but I am very thankful for what today brought in the end. 

I thank each person that prayed for Luke and us, came to support us during the surgery, shared Luke's story on their own Facebook when they certainly don't have to, asked for their friends to pray for him and just everyone's support in general. 

I honestly don't know where I would be right now if I didn't have the support everyone has shown me and my family during this time. It is so appreciated. It is amazing how dreams change in the blink of an eye. One month ago I was dreaming of what it would be like to come home with Luke in January and let him meet Peaches for the first time. Now I am imagining what it will be like to have consecutive good days for Luke in the NICU. 

I love each person rooting for my sweet Luke thank you each one so much!!! 

2 Weeks For Little Man!

Luke is 2 weeks old today! He is having a great past few days! I know it is because of the prayers he constantly receives. So please don't stop! 

Luke is so funny - he's got loads of personality. He kicks back on his tempur-pedic bed and just hangs out all day. It's the cutest thing. And when he opens his eyes it is almost like he's getting on to us for disturbing his relaxation time. He's also a strong little booger - his nurse told us tonight that he has pulled his breathing tube out 4 times since he was born. I think he's trying to let everyone know he's tired of that thing. LOL! 

Luke's doctor told me today that he's doing good. That makes me feel good, you know doctor's don't want to raise false hopes and things of that nature, so I feel that for her to tell us he's doing good then he's really doing good. Tomorrow they are trying him without his breathing tube - let's please pray and hope that goes well for him and he can stay off the ventilator! Also he will have his second brain scan tomorrow - prayers that gets positive results. 

He's doing really well with his feedings, they have increased them even more and he's doing so well! His weight tonight is 1lb 14.5oz!! Baby Luke is packing on the oz's, haha! ;) He's going potty #1 and #2 very well. He's pooping with a suppository but he's pooping when he gets them so that is all good! 

Still having some troubles with his blood cultures. The retest came back positive after 72 hours and his third retest came back positive after 36 hours. The doctor remains pretty confident it's because of a skin bacteria contamination, but he's staying on the antibiotics until they stay negative through the entire test period. Poor baby. Keep the prayers coming that we can get this figured out for little man! 

Mommy had a good day today! I spent the morning with Luke and it made me feel good. His doctor also helped me get in contact with some counseling for parents with premature babies. I am actually looking forward to talking with this counselor. I am sure it will benefit me greatly. I had a pretty good night's sleep last night - I am guessing almost 6 hours, which has been the most since I left the hospital. I actually fixed my hair and put on some makeup today too. This may seem like nothing, but for me this is pretty huge because I haven't felt like doing anything near that since I came home. Little by little, I am getting better. 

I am so thankful for all of the friends and family that have supported us during this hard time. I appreciate everything so much!! Words will never be able to fully describe it! Here are some pics from the past couple days that I haven't had time to upload. Mostly pics of sweet Luke, his awesome first Halloween outfit, and some pics from his 2 week birthday party today. :) 

What is Love?

Today was one of the happiest days of my life! Luke and I experienced our first Kangaroo Care session and it went absolutely perfect! It was the most amazing experience I have ever had in my life. The love for this sweet little man grows more and more! 

Kangaroo Care is skin to skin contact for Mommy and Daddy both where baby can lay on your heart and hear the heartbeat and other body sounds they heard while they were inside the womb. This helps baby a great deal in development because they feel like they are still on the inside. And of course it gives Mommy and Daddy the contact they crave. 

I was very surprised to be able to do this so quickly. We thought we wouldn't be able to experience skin to skin until he at least had his breathing tube out. But his nurse today said he has had such good days lately that skin to skin could be just what he needs to keep up the progress. Mommy loves hearing this because she loves skin to skin for her own selfish reasons too. Another dream come true today - snuggling with my sweet baby boy! Words will never describe the happiness I experienced today. 

LUKE UPDATE:

 

Luke is doing amazing! Little man is going potty so well now that he's on his steroids!! YAY! He's also decreasing on his ventilator settings, little by little each day - AWESOME! The steroids may make him feel grumpy but if he continues progressing so well then we can have more Kangaroo times and this can only make him feel better. 

He is tolerating his feedings - so much so that they increased him another 1/2 cc's today! He's pooping too - with the help of suppositories, but he's going when needed and that is awesome! Now sweet man will start putting on the lbs and this makes Mommy and Daddy very very happy! Grow baby grow!! He's my little BEAN-stalk. ;) 

We still need the prayers for a positive report on his brain scan Friday!! The thought of him having surgery on his brain scares me to death and I certainly don't want him to have to experience anymore pain or discomfort than the poor baby already has to go through daily.

Like I said previously, Luke tolerated Kangaroo Care very very nicely!! His vitals stayed strong and steady the entire time! This obviously makes us very happy, he's making steady improvements. 

He's having a little malfunction with his ports. He keeps getting a positive bacteria reading from the port in his PICC line. The doctor says she isn't concerned with this because she's fairly confident it is a contamination of the port site as opposed to him having an actual infection. Prayers for this please!!!! We don't want him to have to be on antibiotics unless necessary since the antibiotics can destroy his good bacteria as well. We want his immune system to stay as well as it can right now. 

I have to share a few stories with everyone that has given me a little more peace in the last couple days. Last night the NICU staff had a pizza/pasta party for the parents of NICU babies. It was very nice! While we were eating during shift change, the nicest older lady talked to us. She assured us that we were in the right place and Luke was in the most capable hands. She had a nephew born a preemie and he is now a very grown man in college and doing very well. This gave me hope for Luke. She also took out a little piece of paper and got our names and Luke's and told us she would put us in her nightly prayers. She also gave me a big hug and comforted me when I got upset telling her our story. She was almost like a little angel sitting there waiting to encourage us with her sweet words and actions. 

We also met another preemie mom who had her daughter at 24 weeks as well. Her daughter had been in the NICU for 3 - 4 months and was looking at another month in. She weighed 3 lbs. I thought to myself - this mother has been doing this for that long! And she was as strong as I hope to be one day! She gave me some awesome advice for dealing with everything. I hope her daughter can go home to her Mommy soon. 

Yesterday Luke got a new neighbor. He's just born at 27 weeks. Last night while we were visiting, Scott and I saw his Daddy for the first time. He looked very scared and worried. He didn't stay long. Tonight we saw him again and I introduced us to him right away. I gave him the encouraging words I felt he needed - and it made me feel good! I told him even though we are still new at everything in the NICU, we know what he feels right now at this very moment. I think we comforted him. And this made me feel GOOD!!! I hope he could feel our sincerity. I told him I would keep his baby boy in my prayers along with my sweet Luke and every other family and their babies that are in NICU. 

Even though today was a most awesome day, I am still preparing myself for the bad news. And that may never come. I hope and pray it doesn't. But I want to be prepared if it does. 

Luke has some amazing people rooting for him - and I can't thank everyone enough! One day when this is all a distant memory and my Luke is a big and strong young man, I will tell him about everything that got him where is at. And I know he will be appreciative because I will never allow him to be anything otherwise. The saying is true - "It takes a village to raise a child" and every one of you have proven this to be true! We appreciate every single kind word, positive thought and vibe, prayer, story of encouragement, and effort made by so many people to make sure Luke is taken care of! 

Scott has been taking me in the morning to the hospital and coming back at lunch to spend time with Luke and take me back home until he gets off work and we can go back for the night time routine. I love this routine! Every second I spend with that sweet baby, the better I feel. Even if I am sitting there with him in an incubator, things could be worse. Things can always be better and worse. So I am taking it hour by hour still but every hour I am still thanking God that Luke is doing as well as he is. 

Below are some pics I have from the past few days of bonding times with Luke! I hope everyone enjoys, and again thank you so much for taking a minute to check in on my sweet baby Luke and his progress so far!! 

Daddy changing Luke's diaper. 

Touch time with Luke and Daddy! Grasping his finger! 

Daddy/Luke bonding time. 

Luke just hanging out! ;)

Mommy changing Luke's diaper - notice those frog legs below, they look like Mommy's! :P

Luke loves his tummy time!!! 

Hard Day's Night

I haven't written in a couple of days because so much has been going on. Scott went back to work yesterday so I have been getting shuttled to and from the hospital since I can't drive again yet. So between special visits from truly loved friends and my shuttle to and from the hospital and school it's been hard for me to write. Plus - Mommy has slept about 4 hours each night since Saturday! It's getting a little better!

LUKE UPDATE:

Sweet baby Luke is good! Everything he has had issues with has been normal preemie stuff according to the doctor so that's always good to hear! He had another scan of his heart yesterday (10/15/12) and the medicine worked! Luke's valve is significantly smaller and as he grows it will get smaller and eventually close on its own! This is wonderful news! So he won't have to take anymore medicine for that nor will he even have to have anymore scans of his heart. 

His feedings have been increased in amount, which is great! He's being fed every 3 hours and now he's getting 1 1/2 cc's of milk. This makes Mommy very happy!! The downside is that he isn't urinating enough for the amount he's eating. The doctor said his Adrenal gland is not working properly (which is very normal for preemies) but that it's fixable. Those steroids I mentioned earlier that they want to start for his lungs will also jump start his adrenal gland. So instead of waiting until his two week birthday, which would be this Thursday, they went ahead and started them today. This is good news because this is jump starting his lung development and hopefully he can be weened off of the ventilator sooner! He is going to be grumpy while he is on the steroids, but they are going to be good for him in the long run. He will take these steroids for twelve days - hopefully in those twelve days he will be off his ventilator and going potty like he should! Prayers, please, this happens!!! Luke needs lots of prayers right now. 

He will have his second brain scan this week as well. I am worried sick over it, I pray to God every second it enters my mind that he gets a good report from his brain scan and that he will be ok in the future!  Please continue praying for this! I can't stress how important these prayers are to my family and myself. They keep me getting up every morning at least. 

Luke is the most beautiful little man I have ever laid eyes on. I love him so much and I wish and hope and pray so much for him on his long journey to coming home. I can't believe it has already been two weeks since Luke came into this world. It has been the best two weeks of my life because my sweet little angel is here and I have experienced a whole new love I never could have imagined existed. But it has also been the worst two weeks of my life as well. And I am sure you could all imagine how it could be. 

Mommy needs many many prayers right now please. I am having an extremely tough time accepting that this just happened and it is what it is and I can't change it. I am very very sad and hurt. I am angry as well. I am trying to take everything one step at a time. Day by day is not even helping me anymore. I will take this hour by hour now. I read encouraging words from loved ones and it helps for a little while then I spiral back into my sadness. Every time I think of my baby and the fact that I have to drive to a hospital and ask permission to come into the NICU just to look at him makes me so mad and sad. I want to hold my baby in my arms. I want to cuddle with him every time I think of him. And I can't. I cry, cry, cry, cry. I am really ready for this to get better for me because I can't be strong for my baby if I am in such horrible shape myself. I am eat up with worry. I worry about everything. I can't be any other way right now. WORRY! It's why I can barely eat, barely sleep, cry all the time. I am so worried that my sweet baby is going to have problems that I can't solve for him. 

I read an article today about a little girl that is missing because her caregiver ran into a gym and when they came out the car was stolen with the little girl in it. Really? REALLY? This is what I mean when I say - IT IS NOT FAIR. And it makes me so mad, I can't even describe how mad it makes me. I can't touch my child and some people are out there and they aren't even concerned about the well being of their own child. 

I know I am not the only person that is going through this - nor am I the only person who has ever been through this. And I am not ungrateful for the progress and positive news for Luke, not one bit. I am just so scared to get my hopes up just to be disappointed when something does happen. 

I never thought of myself as a mother. Honestly, I never thought I would have children. I was content with Scott and the cats and dogs. But getting pregnant and having a child grow inside you - from you - is the most amazing thing I have ever experienced. Then having them come into the world in less than desirable conditions rips you into a million pieces. I have never loved like I love him. I think that is why I am so full of sadness and anger. I wish I could trade places with him. I wish I could get poked every time they need blood, I wish I had to live with a breathing tube down my throat. I wish I had to go through all of these things that Luke has to go through every day just to be here. I wish he could live effortlessly like me and I would gladly take all the pain and discomfort he has to endure daily just so he could be happy and healthy and satisfied. I just love him more than words can describe and even as I write this I am in tears. This is the hardest thing I have ever been through in my life. 

I wish I could hibernate until January. I wish I could close my eyes and when I wake up my baby boy will be in my arms, in our home, with Scott and the animals. I absolutely can not wait until that day. I can not wait until sweet Luke is here with me and he doesn't have to be put through the things he does anymore. 

Scott told me today I was a great mother when he left me at the hospital. I don't feel like a mother. I feel like I carried this child for 24 weeks and now he's in someone else's hands, more capable hands, better hands than my own and they are taking care of him. I am just there in the background watching someone else care for my child because I can't. My body couldn't even hold him until he was full term. Again, this makes me extremely mad. 

Again, I will always say this - please love your babies with all you can. Be so so thankful that you don't have to go through what I am. Don't take anything for granted. Everything your babies do, enjoy every moment of it!! Be grateful that you don't have to wait to hold your baby, you don't have to sit at the hospital all day every day and watch your baby through an incubator, you don't have to worry about every buzz and ding that goes off on his monitor, you don't have to have daily consults with a doctor on how your baby is doing for that day. Just be thankful for every minute you have with your children. 

Thank you for continuing to support us, pray for sweet Luke and encourage our family in so many different ways. We truly appreciate it. Please keep praying for Luke, he is our special little man and he means so much to us. 

Progress / Regress / Progress / Regress

Progress, regress, progress, regress .... this will be our life until Luke comes home for good. And it is the most frustrating thing that anyone would ever have to go through. Today has been mostly good. I only cried 5 times - looks like I may be getting a little better. The tough times have been pretty tough but overall I would say today was a positive day. Scott made me laugh today. Not that I haven't had a couple laughs here and there in the past 9 days, but he made me belly laugh. And it felt good! He's an amazing man and I love him so much. I am so thankful to have him as a husband and father to Luke. 

Updates on my sweet little man Luke:

• Heart Murmur: The nurse listened to Luke's heart tonight and they are fairly confident the valve has closed because she couldn't hear the murmur at all!! Most amazing news! We are so thankful that has been fixed, one less thing we will have to worry about. We hope we can keep striking concerns off the list!! PROGRESS
• Feedings/Digestion: Luke had a little issue with his feedings this morning. He was still tolerating the feedings themselves but when his nurse checked his tummy after his 5am feeding she pulled out some discolored residue. After testing the residue was confirmed to be blood. He was taken off feedings for the time being. Luke had two tummy xrays today. The doctor thinks the blood could be from a couple different things. The medicine he had to take for his heart does have a side effect of stomach bleeding. The medicine was a lot like Ibuprofen or Advil which could cause stomach bleeding in you or I. The blood could have also been from irritation in his esophagus from his feeding tube or his breathing tube. Until they take a couple more xrays and check his tummy for bleeding a little more he will be off his feedings. Prayers please that this can be cleared up and his feedings can resume! REGRESS
• Breathing Tube/Lung Activity: Baby boy had to be put back on the ventilator this morning. He was struggling way too much to breathe on his own through the breathing tubes through his nose. This makes me sad, but I need to try and remember that he is only 1 lb and he is so young and this is completely normal. It is actually quite unique that his lungs are as advanced as they already are. Once he is on his ventilator his breathing is actually very very good. So for now they will have a little routine with him - he will stay on the ventilator for a while and they will take him off to see how long he can be off, this will hopefully help him increase his time off the ventilator and make his lungs strong. He will also probably start getting steroids for his lungs in the near future which will help him greatly. REGRESS / SAME

Amazing news for the night - Mommy got to hold her baby for the first time!!! Ohmygosh I was in heaven. Oh I can't describe the feelings and emotions. The love I have for this child is the most amazing feeling I have ever experienced. I had to resist the urge to slobber kisses all over him and hug him tight. He was swaddled in his blanket because he can't tolerate skin to skin yet but it was still so amazing. He opened his eyes today as well. He has beautiful eyes - just like his Daddy. My dream from the other day came true!! I did hold my baby and rock him in my arms and stare into his beautiful eyes. That was the happiest moment I have experienced in motherhood. He smiled a little at me and he yawned too. He's the most beautiful baby I have ever seen. 

Luke also had his first bath tonight too. Mommy and Daddy were able to help with that as well. He did not like that! HAHA! Like I said he is a very feisty little man. He likes to either chill with his hand on his head or he likes to be on his tummy cuddled up. But once he was bathed, his tubes and IV's changed and a new comfy bed, he was fast asleep. Sweet baby. We just called to check on him and he's having an amazing night so far. Sleeping so sweetly and he's feeling really good. 

I finally accepted today that this is going to be a long uphill battle. And I think I am ok with that now. Luke's night nurse told me that he is going to progress and regress up to the day he leaves and that it is not a bad thing. This comforted me. Luke has some of the most amazing doctors and nurses in the world. They all love him, I know they do, they love all the babies in the Special Care Nursery. It's amazing to see them with these babies. I know they are going to do everything they can to make sure my sweet Luke progresses and excels in his journey. Northside is amazing and I will never stop saying this! 

Luke also has some pretty amazing people that love him. And I can't thank everyone enough for everything. Scott and I are going to make it through this, but if it weren't for everyone supporting and encouraging us we wouldn't be able to. 

I think I may be able to sleep tonight - I can dream of my sweet Luke all night. I will never forget the amazing feeling I had tonight. I know he knew who we were and hopefully that will help him continue to do so well. 

One of my girlfriends posted a message to me and she said that she has hugged her son a little tighter since she started following Luke's story. I hope everyone does this. Hug your babies (no matter what their age is!!) extra tight and be so thankful that you have all the blessings you have in your life. Think of me and my family when you do this. Pray for us that we will get to do the same thing you do soon! Keep us in your thoughts and prayers and please don't stop sharing Luke's story - the more people we can have praying for our son, the better. We truly appreciate it! We love to hear that someone is sharing our story with all of their friends. It comforts us to know that so many people love Luke and are thinking of him and praying for him. 

Here are a few new pictures of baby Luke and Mommy from bonding time tonight (there's also one from when I gave him his first feeding Tuesday):

 

What is "fair"?

Today was a very angry day for me. Very emotional. I'm told anger is normal and expected but I don't like to be angry. I want to be positive and upbeat but I just can't. Not right now. 

First I must say I have so many things to be utterly grateful about. There are many things to be very thankful for. They are:

• Luke is alive, well, stable and doing incredibly well in his vitals for a preemie his age.
• Luke does not have any disorders or disfigurements.
• Luke has amazing family and friends that love him so very much and think so highly of him.
• Luke is absolutely adorable (ok... that's mommy's deal ... I am very biased on him)

Medically we must be thankful for the following:

• The valve in his heart is much much smaller thanks to the medicine he took. The doctor is very confident it will close on its own. This is super news! 
• He is tolerating his feedings very well. He's even been increased in his number of feedings per day. Again super news! 
• He is OFF his breathing tube - now he may have to be put on it again, this would be completely normal if so - and he is breathing with the help of a ventilator through his nose. For a preemie born at 24 weeks his lung activity is so advanced. This is perhaps the most amazing news we have gotten. Also now that his breathing tube is out the risk of infection is significantly lower. God is GOOD! 
• Blood pressure is stable! No more blood pressure medicine for now! The doctor commented on this today - she has been very impressed with the fact that a preemie his age has been mostly off blood pressure medicine and when he has been on it, it has been such low dosages. 
• His vitals continue to stay strong!!! 

But today has not been all excellent news. Luke had an ultrasound of his brain to check things out in his noggin. This yielded some scary, yet fairly common, results. The doctor told us that all preemies are born with some bleeding in the brain. This is caused from the very tiny and very thin capillaries in the brain that sometimes rupture. Again, this is considered very normal, in fact all preemies show evidence of this at some point on their road to recovery. In the infant brain there are two ventricles shaped like a letter "C" one on the right side and one on the left side. These ventricles have a netting of capillaries (the same ones I just described) within them. When doctors read the results of this ultrasound they grade the "severity" of the bleeding on a scale of 1-4, 1 being no concern and 4 being considered severe. Luke was given a grade of 3. Even though they don't rate the grade itself (meaning mild, moderate, severe) the doctor said if they did it would be a mild grade 3. 

The bleeding is not a concern, in fact he has more fluid than blood which is exactly what they want to see. He got the grade 3 based on the size of the ventricle. If the ventricle fills with fluid and begins to apply pressure to the brain itself then they will need to do surgery and insert a tube to drain the fluid. Sometimes the fluid drains itself and this problem essentially corrects itself. This may not be now, it could be weeks, months from now. It is usually rectified by the time preemies are released from the hospital. Luke will get another ultrasound in one week to see what his brain is doing with the fluid and blood. Prayers are so desperately needed that this can be downgraded to a level 1 or 2. Prayers, prayers, prayers!!! So far each of our prayers have been pretty much answered in a positive way so let's pray we can get the same outcome this time! They can very well get higher results which would be very bad and very unwanted. 

The doctor mentioned the negative effects of this type of activity in his brain. She said it has a 50/50 chance of resulting in mental developmental issues. But she did reassure us that if he does develop any developmental issues it is most likely from his early entry into the world and not his issues with his brain. Let's hope no developmental issues come of this!!! 

Mommy is a walking zombie. I love AMC's The Walking Dead, never in a million years thought that would describe me. All day today I cried. Emotionally deep crying. I have been so angry. Angry because I want to know why this happened to me. Why do I have to be tested like this? Am I really strong enough? Right now I honestly don't know. I can only be the best I can be right now. And it doesn't feel like much. Last night I called to check on Luke before I "went to bed" (as if). He was sleeping of course, resting like he should be. But I cried. I cried because I never thought this would be my life. Scott held me and told me I was the best Mommy in the world. I wish I felt that way. I feel like this is all my fault. I know it's not. I honestly do. But I can't help feeling the way I do. 

I keep expecting to wake up from this like a bad nightmare. I wish it were. I think about my life over the past 25 weeks. I barely had time to process that I was actually pregnant and enjoy my pregnancy before it was ripped away from me. Now I am living in an alternate world where I literally cringe when the phone rings. 

I don't want to come off as a whiny negative person. I really am not like that. I am actually a happy loving person. I have always tried to stay positive and keep good karma. Out of everything that has happened, I am so very happy that my precious Luke is here safely as he can be. I am so happy that I can see his sweet face now, his perfect piggies, his sweet little hands (which by the way are my hands all day long! even daddy says so), his head full of perfect dark hair and everything else on him that I adore. It does help me to write these feelings out so I don't keep the negativity bottled up. 

Again - and I will never tire of saying this, nor will I ever be able to express it enough - thank you thank you thank you for everything everyone has done for us in the past week. The thoughts, the prayers, the success stories, the food, the sweet texts and messages of encouragement, the cards and the gifts I can never never thank everyone enough. 

I also can't express to everyone how AMAZING everyone at Northside Hospital is. I will forever sing the praises of that facility and I will forever be in debt to them for not only saving my sweet baby's life but mine as well. 

Love each one of you for taking a moment to check in on my sweet family. 

Right Now

Today has been a BIG day! We called Luke's nurse first thing this morning to get an update and it has been mostly smiles all day. She told us he had a great night - he's tolerated and digested all of his feedings, he has pooped with the help of a suppository, and he's as feisty as he always is. This makes me smile. I like to hear that he's feisty. It makes me know that he's fighting and he won't stop until he's at home with Mommy and Daddy. It also makes me smile because that is DEFINITELY a Batchelor trait. ;) 

The doctor called and told us that they are fairly confident the valve is getting smaller. This is the news we want to hear! He had an echo-cardiogram today and the tech that administered the test is sure the medicine is working just the way it should. Luke's blood pressure medicine was lowered and eventually taken away today as well. The great news keeps coming! He did have to get platelets today and his white blood count was slightly elevated, but Luke's sweet nurse felt that was all due to the medicine he has to take for his heart valve. The medication is a lot like Ibuprofen or Motrin so it is to be expected that his blood can get a little whacky, especially for a little guy like him. 

Today Luke is one week old. The love of my life has been here for a full 7 days. I can't even begin to describe my feelings. Over the last 7 days I have been through every emotion you can imagine. I have been overwhelmingly happy - happy that he is doing incredibly well considering his situation, deeply hurt and sad - sad that he has to go through so much daily to be here, sad that I will never feel his sweet bumps on the inside again, sad that my pregnancy was taken away from me so soon, sad that I can't even touch my sweet baby, fear - fear that with each phone call there is a chance to get horrible news, fear that he will never be like the other children his age, fear that I won't be able to handle everything we are going through, anger - anger that this happened to me while others take parenthood for granted and don't appreciate every second they get to spend with their perfectly healthy children, anger at myself for not being more aware of what my body was telling me, anger that so many people are going through their daily routine and I sit here and fall apart and try to put myself back together every hour of the day, jealousy - jealousy that others can hold their baby and love on them and kiss them whenever they want, jealousy that others don't have to go through these trying times (although I would never never wish this on anyone in this world, please don't get me wrong). Every day is a struggle and it seems like every day I feel a different emotion for a different reason. But even with these daily struggles, each day does seem to be getting a little better. 

I thank God everyday for Scott. He is the best thing that has ever happened to me. I love him so much and I can't imagine a life without him. Every time I see him with Luke I fall more in love with him than the last time. If it weren't for Scott, I would be way worse than I am now. He has been my rock through everything and he has been the best rock I have ever had. I thank God everyday for giving me Scott. It's the best gift, besides Luke, that I have ever gotten. 

In addition to Scott, I am so grateful to every single person who has prayed, thought about, or asked about Luke. For the rest of my life I will never be able to thank each person enough for their love for our family. I already know Luke is an amazing baby but I am so happy that everyone else loves him as well - enough to constantly keep him in their prayers and check on his progress. 

Today I took a nap (I know, Mommy finally shut her eyes!) and I had a dream that I was rocking my sweet baby in my arms and looking into his beautiful eyes for the first time. I can't wait until that day. I know it is coming I am just trying to keep a positive attitude. It's very much easier said than done, but by keeping thoughts and dreams like that in my head it helps me get through these incredibly hard days. 

Luke has some amazing friends and family and I can't wait for the day when he is big and strong and I can tell him over and over what a special little man he really is. Here are some photos from Luke's little birthday party in NICU. :)

Luke Randall Malone

Luke Randall Malone was born on Thursday October 4th, 2012 at 12:34pm. He was 1 lb, 10.5 oz and was 12 3/4 inches long. He was only 24 weeks gestational age. 

Scott was able to go right up to NICU with Luke when he was born. I had to wait until I had been out of surgery for 12 hours. I finally met Luke at 12am 10/5/2012. He was the most beautiful baby I had ever laid eyes on. He was my baby. He was my miracle. At the moment my eyes fell on my sweet son I knew I would die right then and there to have him grow and be strong and never know the struggles to get him where he was at. 

Luke is 6 days old today. He is a true miracle and a true fighter. Everyday it gets better and worse at the same time. He is progressing - to be such a young gestational age he's very advanced. His lungs are functioning on their own, he is tolerating and digesting his food, he is very active and he's very strong.

Our concern right now is with his heart. All babies have a valve that supplies blood to the lungs. This valve closes when they are born because it's no longer needed. With preemies this valve doesn't close on its own so easily. Luke's valve is still open. He was started on medication today to attempt to close this valve. If the medication does not work, he will need to be operated on. This is so scary to us. I couldn't imagine someone doing surgery on my sweet baby boy. He is getting another echo in the am to see if the medication is working. Prayers it is! 

The Scariest Day of My Life

On Tuesday October 2nd, 2012 I started feeling very lightheaded and dizzy. I thought it was from lack of sleep (Bean did not let Mommy sleep very much) and stress from school and work. One thing you will learn about me is I stress over anything, everything, all the time. I am the biggest worry wart. I felt nauseated Tuesday night but I didn't think much of it. I had a prenatal appointment scheduled for the following Wednesday (today! 10/10) so I thought I would definitely discuss this with my OBGYN. Wednesday morning (10/3) I woke up and had what felt like menstrual cramps. I didn't think much of it because I thought for sure it was growing pains. I mean I was 24 weeks pregnant and that belly was growing and growing. 

I could still feel Bean move - in fact I thought he must really enjoy moon walking on Mommy's bladder, I have a future soccer star in utero! I also had a very light discharge. Again, I didn't worry at the time because I knew the further along in your pregnancy the more discharge you will notice. 

As the day progressed so did the pain. By later afternoon I finally had thought, "Could this be labor? Could these pains be contractions?" I looked up preterm delivery on the internet and my world crashed around me. I knew I was in labor. The discharge was actually my membrane. And those growing pains were in fact contractions. 

I called my doctor and she told me to come in to see her the next morning. If I started bleeding I was to go to the emergency room immediately. At 9pm that night I began bleeding. I went to Northside hospital here in Atlanta and they quickly admitted me and confirmed that I was having contractions and I was dilating. It was my worst nightmare. 

Scott is an amazing man. I couldn't live without him, especially now. He has been my rock through all of this. He held my hand and reassured me that I was in the best hands I could be and that Bean and I were right where we needed to be. And boy did that turn out to be correct! I was put on medicine to attempt to stop labor. If that was successful then I would be stitched and put on bedrest to deter this pregnancy from premature delivery. 

At 9am on Thursday 10/4, my contractions were ceasing but I was dilated to 3 cm. We were consulted by Neonatal in case I did deliver prematurely. At this time everything was being treated as precaution. After the Neonatal nurse left, I told Scott I felt like I was about to pass out. It was 12:10pm. The nurse came in and checked me and I had dilated to 8cm. At that moment I can tell you I was the most frightened I have ever been in my life. The on call obstetrician came in, introduced himself and told me that I had to deliver this baby via Cesarean right then. I was wheeled to the OR by myself (no one could be in there with me since I was put completely out), put to sleep, delivered my baby and was back awake by 12:45pm. 

Our Sweet Bean

So here's the story of our sweet little bean ..

Scott and I knew we wanted children, we just figured we would wait until I finished school. So when I found out I was pregnant it was a MAJOR surprise. But a welcomed one! My sweet Bean was not planned at all. 

I had felt sick for about a month, but thought it was digestive issues. But when I got so sick I threw up on myself on the way to work, I knew something more was up. I usually beat Scott home from work in the afternoon so I went straight to the store and bought a pack of pregnancy tests. I took the first one and it was positive. I took the rest of the pack (6 total) and they were all positive. I didn't know what to think. I couldn't believe I was actually pregnant. This was May 31st, 2012, just a couple weeks after our 4th wedding anniversary. 

I told Scott when he got home that it was looking like we were having a baby. I can't describe the look on his face but it was the happiest I think I had seen my love in a long time. He was ecstatic! But we did go to the store and buy another pack of pregnancy tests to make sure. All were positive. ;) 

I went to the doctor on June 6th, 2012 and she confirmed my pregnancy. That was one of the happiest days of my life. I went back on June 20th and had my first ultrasound. I was 9 weeks pregnant and my sweet baby looked just like a butter-bean. That is where I got the nickname from. Everyone was beyond excited for us! We were having our first baby and they had an expected due date of January 22nd 2013. 

I must say I tried to have the most perfect pregnancy I could. I quit all my bad habits cold turkey and some were way more difficult than others, lol! My pregnancy started out very rocky. Morning sickness - actually whole entire day sickness - plagued the first 16 weeks of my pregnancy! But I knew it would be worth it when I was holding my sweet little bean in my arms. I felt great once the morning sickness subsided. I had a couple of spotting scares in my first trimester but nothing that endangered my sweet bean. I found out on September 21st that my sweet bean was a sweet baby boy! A new love grew inside me knowing that. I just couldn't wait to love on this precious baby boy!