THREE more years!!

Hi everyone,

I just had a follow up visit with the doctor a few days ago and found out that Christopher's next surgery is not for 3 more years. Ye haa! He is doing famously with his weight gain and eating. He is finally crawling and doing all the wonderful things a sweet little baby like him should do. We love him to pieces and are so glad that he is a part of our family. I am constantly blogging about my family and would like for you to join us in our adventure through life at  http://themomentsmatter.blogspot.com/   I will be putting most of Christopher's pictures on here for now until his next major medical happening. I want his memories to be part of our families blog as we look into making books of these at the end of the year.

 Thank you for following along with us this first trying and exciting year.

Exciting Day

Today has been exciting. Last night was his first night without his "no-nos" and today was his first day back on the bottle. We also found him sitting up in his crib when we went to get him this morning and then he was venturing out on to the tile getting ready to crawl. Oh the hard work has only just begun! ;)

Nitzia and Christopher

Eddie bumped into Nitzia at the Crainial Facial Clinic. Lucky. Wish I would have been the one who had taken him to his appt. Of course it is the frist time I wasn't there. I have never met her in person but we have talked on the phone. A friend saw her at the hospital with her son one day and gave her Christopher's blog. She follows it faithfully and called me one day to talk. It was a wonderful conversation and she is a sweet lady. Her son Aaron (see old post) http://roadoftheromans.blogspot.com/2009/09/aaron-morales.html was born with the exact same thing Christopher has and just finished having his first surgery. She told Eddie that he was not eating well. Please pray for him. Boy have we been there before. Keep it up Nitzia, he is going to do great!!

Changes for the Better

I can tell that Christopher is feeling much better today. He is more relaxed and ate a larger breakfast this morning. I am so glad. His first nap was much shorter but that is because he woke up wanting to eat. I will take the short naps for a better appetite.

He nose is finally working as it should. In the past his right ear took the place of his nose. Yes, it sounds strange but it ran like a nose. Anything that should of come through his nose would drain out of his ear. We were constantly cleaning it. There were times when I would be feeding him and milk would start dripping from his ear. Honest. I have told people this before and they wouldn't believe me. It is true. The doctor said that it was NORMAL, at least for cleft palate babies. Crazy.

Anyway in the middle of the night around 2:30 am after I fed him and put him back to sleep I enjoyed a sweet noise that I have always taken for granted. He  was quite stuffed up from a little cold he has and was breathing extremely raspy through his nose. Normally it would bother me, especially since he sleeps in our room and I was trying to fall back asleep, but I realized the beauty of it. He has never done this before because he has lacked the roof of his mouth that seals off his nasal cavity from his mouth. His mouth was closed and all the air was going through his nose and past his brand new soft palate. His has never had the sniffles and last night, though they were major, they were beautiful to me.

Sour face

This is the face he makes when you offer him his milk and he doesn't want to drink it. He started doing it a couple days before surgery for other reasons but now has adopted it to let us know, "I don't want it!"

Much better

He woke up from his nap today with a MASSIVE diaper, which was his first since surgery. I will spare you the details but needless to say I think he was feeling much better after that. He drank a total of 7-8 ounces within 2 hours before going back to sleep. Ahhhh,  everyone can use a "cleanse" ;)  I am hoping that he will continue to do well and again thanks for all your support, prayers, reminders, and thoughts. It is all appreciated.

He isn't eating!!

This report is not so good, sorry. His pain is controlled (at least when he is not eating) and he seems in high spirits for the most part but he refuses to eat. As you know he is already extremely small for his age and has no weight to spare during these difficult days. We have tried everything to feed him through the syringe and he won't be forced. He has had maybe 4 ounces in the past 12 hours. I fear the worse but need to pray. He WILL get a tube if he keeps this up.

Eddie is fairing much better than I am. I do not do well with little sleep and have not been the most pleasant person. My husband did great at 5am this morning after going to bed at 11 pm and being woken up at 2 am. Me on the other hand well we won't talk about it.

The boys are the same and don't quite get what is totally wrong since they cannot see the outcome of the surgery. They are just happy to be playing with the 2 ounce syringes that are too big for my hand to feed Christopher with. This morning one of them thought it was fun to come in at 5 am and spend time with us. Lol. Go to bed!

Please pray for our entier family as we go through this challenge. I know it is all part of the adventure in this life but I would much rather be in the meadows than on the steep rocky cliffs.

On our way home to see Grandma

On our way home and happy to be out of the hospital. Eddie's family lives close to the hospital so we took a quick trip to say Happy Birthday to his mom and let her love on Christopher.

A new toy to keep the smiles coming.

Grandpa and Grandma Roman.

My mom stayed with the older three boys while we stayed with Christopher. She was glad to get a little bit of time to be with him before she left the morning after we came home.

We are home!!

Christopher is doing well. He is on codiene and eats about 2 ounces at a time every few hours. I think it really hurts to eat. We just got home and are trying to rest. We will post a few more pictures soon. Thanks for all your support and prayers over the past few days.

Feeding & Restraining

Here it is! This is what we have to feed him with for the next two weeks, one ounce at a time. He is doing pretty good so far. They wrote up discharge papers today but that turned out to be premature. Though he seemed to be eating well he wasn't eating enough yet for them to release him to go home.

He fought me when I first tried giving it to him. He would only drink an ounce. He seemed hungry to me but I could tell it hurt. It was a different formula then we give him at home so we went to the store to buy his regular one to see if that would encourage him to eat more. Boy did it! He was very happy and ate 4 ounces (which is alot) the last time I fed him.

The syringe needs to be placed in the side of his mouth.

Another reason we weren't comfortable sending him home yet was that he started developing some red spots on his arms and face. Nobody had any idea what they were but as far as I was concerned he was staying the night until I knew he was in the clear.

He's mad! The "no no's" on his arms are to keep him from touching his mouth. This first size (see last post) was too little. He was bending them and sucking his fingers. They put the next size up on him and that did the trick. They look more like two sizes up.

I held him to comfort him, but he couldn't wrap his arms around me! He was mad but how could you not laugh at the sorry sight? He looks kinda like an airplane.

Happy with mama!

Taking care of him

Well today we came in and the first thing we noticed is that his diaper was on backwards. No biggy really, we just thought the nurse did that because he likes to sleep on his tummy and that she changed him when he was sleeping. Turns out the student nurse who was helping thought that was the way to do it. HA!

He really doesn't like being in his "cage" for very long. He wants us to hold him.

What's this?

We're tired...

..and a bit crazy!

Need I say more!

Surgery Two: Post Op

The surgery went well. They decided not to revise his lip. Once he was under the surgical lights the doctor said it looked better than he remembered. Instead they decided to put more steroid shots in the scars. This both softens and flattens the scar tissue. Thankfully that means less trauma.

His mouth is VERY fragile and the doctor wants us to syringe feed him for the next two weeks! He has multiple closure locations on the new roof of his mouth and they can easily open up if he is chewing on or sucking from a bottle. One good thing is that it will be easy to put cereal in the milk and feed it to him since the opening of a syringe is wider than a bottle nipple. Since he is so small, if he is not eating well or even enough than we may possibly have to resort to tube feeding either through the nose or the tummy. Yikes! Hopefully we will not have to go there.

When we arrived in the room they had a "Welcome Christopher" sign over his bed. Sweet! He briefly woke up and once he spotted me he cried to be held, so I left...just kidding! I got to hold him for a bit until he fell back asleep. Poor baby. His cry sounds a bit different. Eddie said it sounds less nasal. Ha ha!

Waiting Room

Captivated by Elmo!

He hadn't eaten for over 6 hours (pre-surgery rules) and had just woken up from a nap. We were in the waiting room and he was getting fussy. He needed a distraction. At least Barney is good for something.

Vital Signs

He was SO good and friendly to the nurse. Little did he know what was coming. I couldn't bare to just publish one photo of this small event. He was too precious and loved the attention.

My Toofus!

Here's a look at Christopher's teeth. Carri wanted me to make sure you know he's not crying in this photo. He's laughing since I'm such a funny dad. These photos were taken an hour before his second surgery.

SURGERY!!!

Hi everyone. My sweet baby has surgery this Tuesday, September 29th at 11am in the morning. Please keep him in your prayers. He will be getting his entire palate repaired as well as his lip "revised". They will cut out the thick scar that formed on his lip and sew him back up. Poor guy. The hospital stay will be two nights or more, depending on how well he eats. His recovery will take 4-6 weeks and then he can have solid foods, yeah, right in time for Thanksgiving. I think I will puree some yummy yams for him. ;) Keep posted for updates and pictures.

Aaron Soto Jr.

 Here is a sweet woman that I just met over the phone today. Her name is Nitzia Morales and she has a precious little boy named Araon, who was born with EXACTLY the same cleft condition as Christopher. It is her first baby and they were unaware of his cleft before he was born. He will be having his first surgery on Oct 8th for his lip and soft palate repair. Please keep them in your prayers.

Look at his sweet smile!!!

The Gift / A Message to Fathers

We love our boys, each one has brought his own special gifts into our family. Without even trying, Christopher has gifted our family in a huge way.

"Behold, children are a gift of the LORD, The fruit of the womb is a reward."
Bible, Psalm 127:3

Every child is a gift from the Lord. It's really sad to see the attitudes towards children in today's society. Many parents see children as a nuisance, something that gets in the way of thier career, thier big plans, thier leisure, thier whatever. What they don't understand is that each child is a gift. A parent who recieves the gift of a child with a birth defect and fails to love, nurture and care for it is like a teenager who recieves a Mercedes Benz and gets angry because they wanted a Lamborgini. The problem isn't that they didn't get the Lamborgini, the problem lies elsewhere.

I've heard of men fainitng as they see thier newborn's cleft palate for the first time. I've heard of men weeping at the sight of thier newborn's cleft. I totally understand that it's a rough thing to see, but if you are a father who has recently been thrown into the role of caring for a cleft child, you need to put your emotions aside for a moment and understand something. You need to lead your family. You need to realize that God has given you the special privelege of leading your family through a difficult trial. This is not a crisis, it's a gift. This gift is more valuable than a sweet pretty face to look at, and this time the gift is for you, to make you into the man God wants you to be.

"My brethren, count it all joy when you fall into various trials, knowing that the testing of your faith produces patience. But let patience have its perfect work, that you may be perfect and complete, lacking nothing. If any of you lacks wisdom, let him ask of God, who gives to all liberally and without reproach, and it will be given to him."
Bible, James 1:2

God has used Christopher to build up the character of each member of our family. I do not know how God will ultimately use Christopher's face to strengthen and change us, but I am so looking forward to it.

When I look into Christophers eyes I see beautiful eyes, just as beautiful as the other three sets of baby Roman eyes I've looked into over the past 11 years. He probably won't win the "most handsome lips" contest at the county fair, but since that's not my goal in raising him, who cares? One thing I do know is that he is now part of a family that is more patient than it was last year. He really did get the good end of the deal. But so did we.

If you are reading this and you don't know God, that is you are not a follower of the Lord Jesus Christ, please consider Him. He is the One who provides strength during times of trial. Please take a look:
Need God

Thanks & best wishes,
Eddie Roman

Slowly but surely

I think he is starting to put on weight. His legs look a bit heftier to me and he JUST grew out of size one diapers. Yep, that's right. He could still wear them if he had to but at least he isn't swimming in the size 2 anymore.

He loves, loves his formula which can sometimes be irritating since he prefers it over my milk. I worked hard for that stuff and now his tastes have moved on. I don't blame him. He is so ready for food. He watches us eat and smacks his lips sometimes. We can't wait until he is all closed up.

Surgery is September 29th and he will get the entire roof of his mouth repaired and closed up. He will be in the hospital for two days at least and I think it will take about 2-4 weeks for his palate to heal until he can have food. Yeah!

Keep posted. It is coming up.

Chow Hound

Someone must be praying because he is eating furiously. He often, well at least once to twice a day, wants a whole other bottle 1-2 hours after his last one. Yeah! Maybe he is growing. I can tell he is getting a bit thicker. Praise God.

More calories again

We went in for his 6 month checkup and it was okay. His height use to be in the 75 percentile and his weight the 10 percentile but they both dropped. Now his height is in the 50% and his weight isn't even on the charts! So sad. I told you he was skinny. He eats as much as he wants and pushes the bottle away when he is done so I need to get creative. I have been dumping extra scoops of powdered formula into his milk to try and fatten him up but he is still only 12 POUNDS!!! I tried the cereal in the milk thing but it was so frustrating. Cutting the nipple to make it big enough to let the cereal through wasn't really working...or it would for one moment and then the next it would get clogged. UGH! So more formula it is. His milk is going to be like syrup. :) Please pray for him. The doctors are not worried since he is hitting all his milestones but it bothers me. He is such a peanut.

WE HAVE A DATE!!

Christopher's next surgery will be on Tuesday, September 29. This is where they will repair his entire soft and hard palate. Thank God for medicine.

Skinny legs

You would never know by his chubby face....

that he has skinny legs!

Weight Gain

I have the skinniest babies! I have always known that...well at least after my initial shock from my first born. Anyway, Christopher is tiny and it is strating to bother me a bit. I think he is ready for food. He watches me eat and seems very interested. He is six months now and I can start giving him food but I have a few concerns. First of all I am not crazy about the idea of all his food getting stuck up in his nasal cavity. YUK! Second of all I really don't need to experience food coming through his nostrils. Remember, he is still wide open on the inside. Most importantly, I think it would be wise to hold off on the food until after he gets his palate repaired. This will give him the opportunity to experience food and the palate for the first time at the same time and hopefully encourage the use of his new palate in his eating technique. That way he doesn't have to relearn how to eat. It may already be a struggle to relearn how to drink. All of this to say that I am concerned about his "skinniness" and would like to see him gain some weight. We see the doctor soon and I will ask about putting rice in his milk. We will see. Pray for some chub.

Scar

We went to the docotor today for a follow up on the healing of his lip. They said his scar looked thick and that it was necessary to give him a shot of steroids. The doctor poked the needle in boths scars on each side of his lip. Poor Christopher. The nurse wrapped him up tight in a blanket so he couldn't wiggle. He was MAD! Apparently the steroid shot will soften the scar tissue and hopefully allow it to heal with a thinner apperance.

The doctor also noticed a scab that is reaccuring in between wear the lip was reconnected. He mentioned that it should no longer be doing that and they will have to make a revision during the next surgery, which by the way will be in Sept or Oct.

Other than that he is doing great and has no complications. We are really enjoying him as his little personality begins to blossom, Here are a few shots of the family adoring him.

What a difference!

Doesn't he look great?! What a big difference with just one surgery.

His fingers and bear.

He loves to wrap his arm around his bear......

and put his fingers in his mouth when he lays down to sleep!!

Promised Pictures

He really is a happy little baby!!

Jesse is my right hand man and takes care of him often. Check out the fingers in the mouth. He loves them especially when it is time for a nap.

Medical Tip and Monitor

Well we had another post op visit to the doctor and it was OK. They said that I need to be massaging his scar in order for it to not grow so thick. Thanks for the advice doc, wouldn't been nice to know sooner. So now we are massaging his scar at least twice a day and I am feeling like I am behind in this therapy since I was not informed at the last visit. Okay, I guess I need to loose the attitude and be so very thankful that he really does look great. The first six months of healing is the most critical time for scar development. If I understood the doctor correctly colagen builds up in the area of the wound to form the scar and if too much is produced it results in a thick scar. If you massage the scar area it reduces the amount of colagen that builds up and keeps the scar tissue from becoming excessive. So remember that anytime you or your little ones have a scar forming from an injury. Rub away and it will keep the scar tissue from growing too thick.

Also, we saw the Pulmonary doctor and he said that Christopher no longer had to be on the apnea monitor. Yea! No more wires or crazy beeping due to "loose connection".

Okay, I will honestly try to take pictures tomorrow since I have the camera this weekend and get them posted.