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!!!