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):