What a day!

Our day actually began at 12am! JT decided to wake up and play and talk and giggle at the stroke of 12. At first Jake and I thought "this is perfect! We can give him one last bottle and put him back to bed before his surgery." Not what JT had in mind. I gave JT his bottle and gently lay him back in bed, left his quiet room thinking "success!" Then as I lay my head on my pillow and close my sleepy eyes I hear it... JT laughing and talking and giggling. Loudly too. This went on for a few HOURS! At 4am I decided enough is enough, someone has to sleep in this house. So I went, got JT up out of bed and headed to the sofa so Jake could sleep. JT giggled and wiggled on my chest for a while and then finally found a resting spot at about 4:45am. The alarms went of at 6am for us to get up, dressed and out the door to the hospital. Not the night Jake and I were hoping for. But at least he was happy!!
At 6:30am I went into Ethan's room and gently woke him up. He looked at me with sleepy eyes and then gave me a HUGE grin! It made my morning. Then I asked if he was ready to go and spend the day at a friends house and he smiled even more. "yes please" he said as he climbed out of bed.
By 6:50am we were out the door and headed to drop Ethan off. Thankful for amazing friends who offer to help all the time we dropped E off. I didn't worry about him once, knowing he is in good hands, loving hands was just what I needed!
We arrived at the hospital at 8am and by 9:45 right on time JT was being put to sleep. They allowed me to get in a gown and hat thingy and go back with JT to the operating room. I held him and whispered in his ear as he lay struggling to get away from the sleepy gas mask. He screamed and tried to hold his breath but after only a few moments he was out. I gave him one last kiss, whispered "I love you" and I was back with Jake. Although this is the second time I have watched my little baby be put to sleep it still chokes me up. It's hard to hear "the normal" sounds he makes, see his little eyes half open and let go of his hand. Being a parent is hard, but doing that... ugh, it's just painful.
Jake and I headed to the waiting room where we sat and talked, played a game or two and just waited. After about 1.5 hrs. the Dr. came out and told us everything went well and that we could go and see him in about 20 minutes. I think that 20 minutes was longer than the entire 1.5 hrs!
Once we got back to the recovery room we could hear JT fussing. He had a wonderful nurse with him named Charlie. Charlie was so great. He allowed me to climb into JT's bed and just lay with him, hold him as best I could and just let him know that mommy and daddy were there. He had a fever of over 100 due to the anesthesia. They showed us his surgical site which was really hard for me to see. It took everything in me not to cry. I had to be strong. Jake didn't need two babies to care for. (lol) An hour later Jake was getting the discharge papers and car and I was getting JT ready to head home. We got him home, settled and in bed for what we hoped would be a nice long nap. I left and went to pick up Ethan and run some errands while JT napped. Sweetest moment - I got E in the car and the first thing he did was ask about JT! We talked about how JT has some ouchies (as we call them) and that he hurts. We talked about how we have to love him and help take care of him b/c he is going to be cranky for the next few days. When E got home he walked over, looked at JT and gave him a kiss. God sure knew what he was doing when he made Ethan! JT couldn't have a better big brother!!

Jake and I are prepared for a long night and a long day tomorrow. Our prayer is that the Lord will sustain our bodies for this adventure too. We also pray that Ethan who is a fantastic, loving and understanding 3 year old won't become jealous of the attention JT needs. The more than normal extra attention JT already needs.
God seriously blows my mind. It is only by his strength that I am sitting here writing this with a cheerful heart. Thankful for the incredible blessings we have in our lives. Thankful for my husband who is always there with me and for me. Thankful for my first born who has so much love and such a big heart. Thankful for JT. Who with all his challenges smiles and laughs and talks and giggles even after a painful surgery. God may give us challenges but He also gives us the strength, grace and cheerful heart to make it through. God is good!

Answers aren't always answers are they?

Today was yet another eye exam for JT. We are in the midst of considering changing Ophthalmologists. We do not care for the Dr. we have been seeing at Children's. He is cold and non communicative which doesn't really work for me. I have been trying to tell myself it isn't about me or the way I feel it's about JT and his care. This Dr. is a good Dr. but his lack of communication and warm fuzzies leave something to be desired. He is usually very short with his time and answers which as a mom makes it hard to trust him with one of my most blessed treasures! I told a friend the other day that I need him to care about my child! I need to know that my child matters and that he isn't just a "case".
So today we sought out another very well known and respected Dr. in the field. He was wonderful. He spoke with us, gave us answers and advice. He also told us that sticking with the Dr. we have is a good choice (although he too is a good choice and would be happy to have JT as a patient). He agreed with what we have been understanding from the previous Dr. and said he would do it the same way. The problem is he is SO FAR AWAY and I would have to sit in hrs. of traffic every 3mos to see him :-p
The other problem is he didn't give me the answers I was hoping for. I wanted a clear cut answer. Tell me what to do for my son and I will do it! But that isn't what happened. He told us that JT is unique. That we don't know what he sees and we won't for a time, until he can tell us. He said JT will in fact need surgery but not until his brain and eyes determine how they are going to work together. (when that is no one knows!) Although I am so grateful for this Dr., for his time and answers it's hard to sit here and not have any more clarity on the situation than I had before. I was so hopeful that this would be the answer. That we would FINALLY know what to do! But, no. God has a different plan! I guess I am still learning the "P" word - you know patience (said in a whisper. I don't pray for patience... it's too hard lol). So I sit, thankful for God's provision, blessings, comfort and lessons to be learned. I also sit prayerful. Prayerful for answers and for healing. Prayerful for my sons future.

Incredible Joys in the midst of a serious time

This morning would have been a GREAT morning to have gone back to bed and start the day over again. JT woke up early which means so did I. With very heavy eyes I climbed into the shower while Jake and JT cuddled in bed. I decided that this morning I needed some serious coffee and freshly made scones. I brewed the coffee, turned on the oven and made the scones. All was going well. JT was being fed, Jake was getting E up, scones were in the oven and I convinced Jake to stick around for a scone or two. Then the day really began. Ugh, I realized I never turned on the timer for the scones. Then while heating up JTs bottle I never actually turned on the bottle warmer. Something else happened which has escaped me at this point in time. Oh well. Needless to say, heading back to bed seemed like the best idea possible, sadly, not an option for today.
But as my day was quickly heading down hill I sat at the table with Ethan for some scones. Ethan has been bringing smile upon smile to my face. With his silly 3yr old ways and goofy sayings, his beautiful smile and even better giggle.
I sit here across from my oldest listening to my youngest in the baby monitor and I know how blessed I am. Today is going to be a hard day. JT has physical therapy, then lunch, maybe, prayrfully time for a nap then off to yet another eye exam. I am fairly certain the day is harder on me than on either of the boys but that's not the point. The point is that in this what could be stressful day I am incredibly blessed. I am SO happy. I have an amazing man as a husband. He listens to me, supports me and is there whenever I need him. How blessed can I be!?! Then my boys, my sweet wonderful boys. My cup overflows today. God is so good!!
It makes me sad to think that people don't think there is a God. How can you not? Yes things are challenging in this household. We had a premie by 3 mos. who has PVL and CP. He is 1.5 yrs old and he doesn't sit, crawl, walk, talk... but he is precious! God gives us the strength to make it through each day as it comes! God gives us peace when there is no explenation for it. God gives us hope for each day; hope that JT WILL sit, crawl, walk, talk. He protects us in ways we don't see or know. He brings me smiles and joys I didn't even know were there on crazy stressful days. God is real! Yes, bad things happen. God even tells us that "bad" things will happen to us but they are always used to bring us closer to Him if we trust him. Trust God and know what I know! My joy is real! My hope is real! My peace is real! I want you to know it too!!

Pray for today if you think of it. Thank God for the joys and blessings we have already received today and pray for JT's eye exam. Pray for wisdom and clarity for Jake and I to make the best decision for JT.