I guess I'll start at the very beginning with God being at the center of it all. Going back a few blog posts to Jase's Story, you'll find that telling J's story has been quite difficult. In all honesty, the night that was supposed to be the happiest night of my life became one of the scariest and 'lost' days of my life. I cried that entire night questioning God and asking why we would be put in this situation.
Why did my kid have to be the one with a cleft? Why does my kid have to go through this? Why after taking such good care of myself did this happen? Why would this happen to US?
I've been a believer, a true believer in God, since I was 13. I have always known who God was with being raised in a Christian home with Christian friends/family, but I didn't truly begin to know God until I was a teenager. God has been at the center of our (my husband and I) lives from the beginning of our relationship, yet I have a whole new perspective of WHO our God is and what He is capable of since the day I began questioning God in April.
A very cold Tuesday morning in February, my husband and I got out of bed with butterflies in our stomachs and with circles under our eyes from NO sleep. This day was the day we had been dreading for 10 months. There had not been a day that I hadn't thought about this cold February morning. As you know, J was born with a cleft palate and diagnosed with PRS (Pierre Robin Sequence).
I went in to J's room to wake him and he was up and at 'em with a bright smile on his face. He couldn't wait to begin his day, yet he didn't quite understand the traumatic events that he was about to face and endure. I will always remember this day vividly. We put his Valentine's shirt on him along with his fleece hoodie and pants. Hubs nor myself ate or drank anything this morning and we loaded J in the truck along with all of his favorites, our luggage for the hospital stay, snacks, backpack filled with distractions for the day, and blankets. He was only allowed to have clear liquids until 6am (surgery at 9). I made him a sippy with diluted apple juice. HE LOVES THIS, yet he knew something was going on and hardly drank 2 ounces.
We arrived at the hospital RIGHT ON TIME. My father was there waiting on us. J, my father, and I waited inside while hubs parked the truck and brought our distractions (that didn't work) in. I'll always remember the smell of my father's leather jacket mixed with the smell of the hospital as a reminder of that morning. We were called back after about 5 minutes of waiting to check in. Once we were checked in, we waited about 5 more minutes for J to be weighed, temperature taken, and to be changed into his little yellow hospital shirt and pants. At this time, we were in a hurry to get this process over. J gave my father some lovin's and we headed on back to a room to wait on his doctor.
J was restless and I allowed him to suck on his cup without anything in it to soothe him. At this point a few nurses were in and out checking on him and taking blood. My memory gets a little foggy here, because quite honestly all I was trying to do was take in all of J's lovins and try my darndest to not cry. Despite all my efforts (watching T.V., reading J books, making a mental grocery list) they didn't work. As soon as his sweet sweet nurse Lucia walked in with another nurse, I fell apart. I couldn't help but cry and all the stresses of this day were being let loose through tears. Here is where I should have looked to God, but instead the distractions took over me.
Lucia and Dr. Hartzell explained to us one more time what to expect and answered all of our questions. It was time.
Lucia asked to take J from us and he went right to her with a bright smile on his face. I went to give him some more lovins and he wouldn't even have anything to do with me. He was so excited to be in her arms. We gave him some kisses and watched as she took him around the corner. With tears rolling down my face, we walked the halls back to the waiting room. Hubs looked at me and said, "We didn't pray over him with our family before he left." I couldn't help but to linger over this the entire time we waited for his surgery to end. I prayed all morning for our little man.
In the waiting room, I was met a few minutes later by my sweet sweet friend, Bridgette. She knew exactly what to say at all times, the moments I needed to leave the waiting room, and the topics of conversation that I needed during our 4 1/2 hour wait in the waiting room.
THE LONGEST 4 1/2 HOURS OF MY LIFE! This day seemed to never end. Lucia came out and told us that everything was going great. I can't thank her enough for her kind words throughout the past 10 months and her compassionate nature. God knew exactly what he was doing when he put her in our lives.
Every hour during surgery the lady at the desk would call us just to let us know that surgery was going great. In a way, I wish that we wouldn't have heard anything during this 4 hours. No news is good news.
We were finally called back to speak with Dr. Harzell, Dr. Rosenberg, and Nurse Lucia. Surgery went well and as expected. Not only was his cleft palate closed, but he also had tubes put in his ears. We were told that he had a tongue suture and not to be alarmed when we saw him. (This didn't help our anxiety.)
We were called back again 15 minutes later. We were told he was in recovery. We followed a nurse back to the recovery room. This ocean themed room included at least 10 curtains. As we walked down the hall looking for the right stall, I walked right past our baby. I didn't recognize him. What mother doesn't recognized her own child? Well, one who wasn't expecting to see what she saw.
My baby was being held by the nurse and she was so loving to our little man. He was watching her as she filled out paper work and she was just a'rocking him side to side as he whined. As soon as I saw him, I ran to her and picked him up. He laid his head on my shoulder. The black suture was sticking out of his mouth. This was looped through his tongue in case the swelling blocked his airway, they could pull his tongue out to help him breathe. Luckily, the suture was taken out minutes later. :)
Our sweet boy immediately fell back asleep on my shoulder.
We got to walk to our room while holding J hooked up to all of the monitors, IV, and covered in blankets. Surprisingly we had to walk through the waiting room while all of our family watched.
When we got to our room, we were surprised to find just two cribs and one chair. How was I supposed to hold my hurting and down right pitiful baby? We were then offered a bed, yet had to always be in bed with him. We gladly accepted.
I spent that entire evening worried about every little thing. His ears were bleeding. His nose was bleeding. His mouth was bleeding My poor baby looked pitiful. I'd have to admit, our little trooper took this sooooooooo much better than we did. I was a WRECK. A WRECK. Our family soon got to come back one by one and check on us. I wouldn't let our baby go.
We hadn't expected to stay longer than one night in the hospital, yet J wasn't drinking. I wouldn't blame him. His entire mouth had been taken apart and put back together along with tubes put in that were still bleeding.
I can't thank Dr. Rosenberg and Lucia for their compassion and for drying my tears. Night two they walked in and I was a complete wreck. I was done with the IV stuck in my baby's foot. I was done with the tears. I was done with the constant worrying. Watching my baby cry in pain had taken its toll on me. Dr. Rosenberg and Lucia were so very compassionate and the exact reason we love Children's Hospital so very much.
Finally on day three our WONDERFUL WONDERFUL nurse that had been with us for 3 days came in and encouraged J to drink. He drank his 3 ounces that had to be taken before we left. As soon as were given our discharge papers, we skedaddled right out of there.
We immediately went home after picking up J's prescriptions. I was so thankful to be home, yet scared to death. What were we going to do without his nurses? My father showed up shortly after we got home and made me sleep. I hadn't slept more than 1 hour at a time for now 4 days. This nap was THE BEST!
Recovery was hard on us, yet our little boy was a true Superman. He took surgery and recovery so well. It did take him right at a week to begin drinking the recommended ounces. He had to wear his no-no's at all times, unless he was directly supervised. This did include night time and naps.
I had taken off a week to stay at home with J and hubs had to go back to work immediately after we got home. :(
After two weeks of recovery, I was playing with J and while holding him upside down I noticed a black spot in the roof of his mouth. Could it be? yep. Our little superman had a hole in the roof of his mouth. After a few days, I checked again. It was still there. His doctor had said that sometimes cleft palates have to be repaired more than once.
I was devastated.
Devastated.
I had waited months for all of this to be over. I had faith that our child was going to only have to have ONE surgery.
I immediately e-mailed his nurse and was informed they were going to wait until his post-op appointment to see it or do anything.
I went back to work. I kept to myself. Truly, I was depressed.
His sitter noticed the hole in his mouth which was still about the size of two pencil erasers. This IS quite large when you think of a 10 month olds palate. It was right where his hard and soft palate meet. My mother in law noticed it next. I was hoping that I was just seeing things, but after a few others saw this hole in his palate, I began the process of accepting what our future held for us.
Every night I prayed. I didn't just pray, I PRAYED. I was down on my knees, begging God to heal my baby. Thanking him for our wonderful child and for finally giving us a child after waiting 3 years for him.
I am thankful. I am SO thankful for our little boy. God knew exactly what he was doing when he gave us this most precious child to raise showing him God's love. We are truly blessed and I would go through this whole entire process all over again. Even though we were given a child with a cleft, we now know WHY. God has answered all of the questions that I asked him on that scary April night.
Two days before his post op appointment (4 weeks after surgery), I checked his palate again. That dreadful hole was STILL there. No healing. Again, nightly we prayed. I prayed. I PRAYED. The begging, out loud, crying on my knees, mumbling, squalling prayer.
We went to his post op appointment. Disappointed. Upset. Nervous.
Dr. Rosenberg came in and looked at his palate and we couldn't believe our ears. His palate was completely healed. Stitches were still in, but no hole. We were still doubtful, but when Dr. Hartzell came in and said everything looked good we couldn't believe it.
GOD had performed a miracle. Within two days J's palate had completely closed. I took a look for myself after leaving the hospital. I COULD believe. God is our almighty. God had answered our prayers. The WHY we had asked God all along had been answered. J was given to us to show us that God still does perform miracles. He is still very real and deserves praise every second of every day. When I hear someone say, "Praise Jesus," I now know the true meaning of PRAISE JESUS! Not a second goes by that I don't look to God knowing that He is right there beside me walking with me through every journey. Not a second goes by that I don't doubt God and know that there is a reason for all the trials that we go through in our lives. I have hit the lowest of lows this past year, yet I now have the closest relationship with God that I have ever had.
I am here to tell you that God knows your every worry. He is the Almighty Healer, Lord of Lords, answers prayers, and performs MIRACLES.
I received a text from a friend after informing our friends of family of the good news and it said…
"God is good my friend. So glad great things still happen to great people."
I will tell you that things don't happen just because someone is 'great', but great things happen to those who ask, have faith, and believe. Great things can and will happen to EVERYONE, even the not so great, because God loves everyone. I'm not here saying that I am a great person and that's why God has showed us his healing powers, because there are days that I'm a not so great person. God loves us all and created YOU for a purpose.
There are things in your life to be grateful for. I will admit that I have had this awful gray cloud over me the past year. After losing two great people in my life that I was so close to, dealing with this thing called PRS, and trials that have been dealt my way; there were days where I was the doubtful Christian and had hard trying days. Now, I am happy knowing that God has been with me every step of the way. God is SO GOOD.
If you do not know God or are doubting your relationship with God, please know that He IS walking with you and loves you. He isn't 'the church' or 'the way that person acts'; He is GOD and understands you and what you have been through and what you are going through. He loves you so much and will answer your prayers. They may not be answered immediately or the way you expect, but they will be answered, just ask.
The following were placed in the bible for a reason. They are not just verses. They are God's word and His word is oh so true.
Psalm 34:4
I sought the LORD, and he answered me; he delivered me from all my fears.
Matthew 7:7
7"Ask, and it will be given to you; seek, and you will find; knock, and it will be opened to you. 8"For everyone who asks receives, and he who seeks finds, and to him who knocks it will be opened.…
Psalm 37:4
Take delight in the LORD, and he will give you the desires of your heart.
Matthew 21:22
If you believe, you will receive whatever you ask for in prayer."
John 16:23
In that day you will no longer ask me anything. Very truly I tell you, my Father will give you whatever you ask in my name.
1 John 5:14
This is the confidence we have in approaching God: that if we ask anything according to his will, he hears us.
Our experience this past month proves that God does exist. Yes, we are thankful for the doctors! Oh we are so thankful for them. God knew exactly who to put in our path. Dr. Hartzell, Rosenberg, and J's nurses are WONDERFUL and we can't thank them enough for their time, compassion, knowledge, and patience, yet God is the Almighty Healer. He proved that to us two days before J's post op and the day of his post op.
Please know, GOD IS GOOD EVERY DAY!
We thank you Lord for our wonderful son and the miracles that you have performed in our lives. We thank you for your compassion, learning trials, and your wonderful healing hand. We praise you Lord! Oh how we praise you!
which is a pigeon nipple that goes on the regular medela bottles. AMAZING! This nipple looks normal to anyone else's eyes, but it still has a valve where the milk can't back flow. It also has a hard top and a soft bottom on it. This way all Jase has to do is basically bite down and the milk flows out. I am thanking God daily that he has finally figured this out. I was dying over here feeding my kid like a bird. 
