The Roman's Road

Much needed update

2012-01-05T20:45:00.000-08:00

I cannot believe it has been a year since I have posted anything. We have been a busy family over here with four healthy active boys and no surgeries and few checkups. Ahh! Eddie has urged me on many occasions to post but my easily distracted mind and messed up priorities has kept me from doing so. So here I am at the beginning of the new year to let you all know how very wonderful our little Critter is doing. As you can see he is an active, healthy, normal little boy.....

....who needs naps...

.....and baths...

...and speech therapy..

...and checks ups...

...and a few pulled teeth. Ha! Poor guy. His has deformed enamel so he literally wore down his two front teeth to the nerve so out they came.

This last picture is actually Jesse and Critter saw it one day and said, "Dat me?" They really do look alot alike.

Complaining! Really?

2011-02-04T12:40:00.000-08:00

I have done far too much complaining about his new scars. The last surgery the stitching/scars were razor tight. This time around they are not. But my God is sovereign and somewhere after the surgery I seem to have forgotten that. He is good and gracious no matter what the outcome, no matter what the circumstances. Yes, I will ask the doctor lots of questions when I see him again but I will not come down hard on him. I will ask questions of concern with kindness and courtesy even though my heart wants to do differently. God allows ALL things to work together for the good to those who love him to those who were called according to his purpose. This is no different. I just finished reading the book of Job and it was amazing. His friends were dead wrong. Job's affliction were not due to his errors but God's allowing. Not that our affliction is nearly as bad but it is the lesson that matteers. Job's only error was to argue with God, "why?" And for that he repented.

And besides look how darn cute he is!!

Healing Scars?

2011-02-01T10:10:00.000-08:00

His scabs fell off the other day. How do you think he looks? I think he is adorable but I am not crazy about how his scars are healing. They seem thinker than before but I guess time will only tell. I am just glad that he is mine! :) Yes, he tilted his head like that on his own when I took his picture. Funny!

Stitches Removed

2011-01-26T18:52:00.000-08:00

He waited so patiently to get his stitches removed. He was perfect. I know his scabs don't look pretty but look at that face. These pictures were taken one right after another. Love his expressions. He didn't shed one tear when they clipped the stitches off but he whined for me when I returned to the room. Yep, that's my boy!

Well the nurse walked in right when we got there and took one look and left without much said. I know her well enough to know that she didn't like the way they look, that is the forming of the new scars. I haven't liked them from the beginning. I can tell they will heal thick again though his lip is much more even. Oh well. He is pretty darn cute anyway. The assistant doctor came in and said, "They look great!". Uh huh, sure. I spoke to the nurse again after the doctor left and ask her point blank what she thought. She would not give me a strait answer just, " Do what the doctor told you.", which is applying Scar-ease ointment and given his lip daily massages. Of course once his scabs are gone. :) So I will.

Meanwhile I will love his super cuteness and all the wonderful expressions he makes to keep me smiling.

This one is the best!!

Happy and Sad

2011-01-20T15:40:00.000-08:00

He is happy when he gets what he wants.....

.......and sad when he doesn't! He actually smiled when I pointed the camera at him right after I told him not to scream at his brother.

All in all he is doing fine. He cries alot because he wants to eat what he wants to eat and feed himself when he is hungry. So I guess you could say he is being a typical 2 year old. ;) He is pretty sensitive but we are all being understanding and patient...well at least trying.

Good Morning

2011-01-19T08:46:00.000-08:00

I am so sorry I left you with that sad post last night. I had to shut down at 7pm. Here are some better pictures. He is doing great. He had like 3 cups of jello last night and was so excited about it. He is currently polishing off a little carton of chocolate milk. :) Unfortunately he can only be on super soft foods, like smoothies, yogurt this next week. But he can have as much ice cream as he wants. :)

He slept great and is in good spirits. He really doesn't like his arms splints still but he is good about not messing with them. Well, we should be discharged in a few hours. It was a quick visit.

Recovering

2011-01-18T17:51:00.000-08:00

Poor little fella. We are in his room and he is out cold. I held him for a bit when he woke up in recovery and he fell right back asleep in my arms. He is doing fine. Hopefully he won't be in too much pain when he is awake and aware. He did let me know in no uncertain terms that he did not like the arm splints. Sorry little fella, doctors orders.

Prep for Lip Revision

2011-01-18T15:52:00.000-08:00

Today was the day. We are currently waiting for him to wake up in recovery. He didn't eat all day, in preparation for his surgery, and he didn't get taken in until about 1:40. He faired way better than I did as I was complaining about being hungry and he was super content, until of course the nurse took him. Stay posted for more pictures. So far so good.

They blew bubbles for him while they were taking his vital signs. They are so great here.

YEP! The cap lasted about 2 seconds while the gown made it for about 10 minutes. haha

They actually tagged his bear to go in with him to surgery so he could wake up to him. So cute and considerate.

He was copying me. Ya think. He was trying to keep entertained. The wait was super long.

Who needs baby toys?!

Angry Birds! That's right folks, sheer fun for him on papa's iPhone 4, oh and for papa too!

There he goes. Not sure if he is mad at me for taking pictures or for not saving him..or BOTH.

Critter

2011-01-03T22:41:00.000-08:00

Critter is his evolved name. Almost all our boys get their named dragged around until it forms into some unique and fun version that fits them perfectly. Then they outgrow it. But right now it is Critter and we like it. Here is a recent picture of him. He is doing great. Nice and plump from all those Christmas cookies. :)

Well he will be2 on the 11th and the doctors have decided to do another surgery the following week. We should only be in the hospital for a day. Since the healing of the first lip repair the doctor has been unhappy with the scars. They healed thick and continue to show a redness that he does not like. SO he has decided to do a "lip revision". They will cut the scar tissue out and hope that the incisions heal thinner.

The surgery is on the 18th. We will keep you posted but in the meantime we would appreciate your prayers.

Assessment

2010-09-05T19:48:00.000-07:00

Back in May, yes that is right I am a bit behind, Christopher had an assessment appointment. Well it was really a panel appointment with 5 different specialists. Let me see if I can remember them all. The surgeon, the orthodontist, the ENT, the hearing doctor (for lack of the proper term), the social worker. It took about 4 hours and Christopher was a trooper. The purpose was to have him assessed in his progress and inform us of ALL that lies ahead, which we found out is more than we thought. He is doing well though he had to have new ear tubes put in back in June. He has a long road ahead of him but we are confident in the doctors and care that is being provided and are so grateful to our Lord for all his provisions. Oh yeah, and his next surgery is in January. His surgeon wants to revise the scars on his lip. I will post more when that time comes.

Here is a sweet picture of him cooperating for the "hearing doctor", whatever her real title is. :)

My number one encouragement!

2010-04-15T14:43:00.000-07:00

This sweet little girl, Sophie Bartoldus, daughter of some long standing friends of ours, was born 4 years before Christopher. She was born with a unilateral cleft lip and palate. She was the first person I thought of when Christopher was born. I thought of her because I knew Christopher had the same thing before the doctors told me. I never really completely understood her condition nor did I ever see it BUT I knew that she was okay and doing well. That was the best thing for me to focus on. I am not sure how I would have responded if God had not allowed me to know what she had to go through the first year of her life. I also knew what my friend Sandy, Sophie's mommy, had to go through. Knowledge is a blessing eventhough we did not know Christopher would be born with a cleft lip and palate. God knew what I could handle and gave me the knowledge I needed. He is so good. She was the biggest encouragement for me in what could have been one of the hardest times as a mother. God used her little life to pave the way for me to be encouraged and blessed in the midst of what could have been a huge disappointed! I was not disappointed, I was blessed!

Isn't she sweet!!!!!

On his own!

2010-03-04T10:40:00.000-08:00

Christopher's nurse said it was time for him to be done with the bottle. I was reluctant. He has been my special needs baby and since he couldn't suck at all I didn't really want to deal with the challenge of teaching him how to drink from a sippy cup that was just dripping milk from it. Well I recently threw all his bottles away. I figured it was the only way I was going to be committed to help him drink from a cup.

I bought these "disposable" cups that have a soft plastic, which I need so I can gently squeeze it, and do not require a valve to keep the milk from dripping out. They work great for his needs even though they do drip and can be messier than I would like. Oh well, that is all part of it. One day he was making a funny noise and I realized that he was sucking the milk out of the cup. He has a very small hole in his palate that did not fuse during the healing process so it sounds like a broken straw when he sucks. Hey, I will take what I can get.

Anyway, he can drink the cup all by himself now with his own suction and no squeezing on my part!! This is a huge accomplishment. I did not think it would happen until he was at least 2 and it is SO important for his speech development.

THREE more years!!

2009-11-07T20:45:00.000-08:00

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

2009-10-20T13:28:00.000-07:00

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

2009-10-14T23:03:00.000-07:00

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

2009-10-06T09:42:00.003-07:00

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

2009-10-04T09:37:00.000-07:00

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

2009-10-03T21:57:00.000-07:00

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!!

2009-10-03T10:14:00.000-07:00

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

2009-10-02T17:16:00.000-07:00

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!!

2009-10-01T17:42:00.000-07:00

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

2009-09-30T20:15:00.000-07:00

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

2009-09-30T19:51:00.000-07:00

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...

2009-09-30T19:45:00.000-07:00

..and a bit crazy!

Need I say more!

Surgery Two: Post Op

2009-09-29T19:03:00.000-07:00

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

2009-09-29T18:43:00.000-07:00

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

2009-09-29T18:37:00.000-07:00

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!

2009-09-29T18:27:00.000-07:00

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!!!

2009-09-25T09:31:00.000-07:00

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.

2009-09-12T22:34:00.000-07:00

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

2009-09-12T00:09:00.000-07:00

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

2009-09-09T21:22:00.000-07:00

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

2009-08-14T11:41:00.000-07:00

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

2009-08-04T21:44:00.000-07:00

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!!

2009-07-17T10:40:00.001-07:00

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

2009-07-15T16:11:00.000-07:00

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

that he has skinny legs!

Weight Gain

2009-07-14T23:07:00.000-07:00

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

2009-06-17T22:02:00.001-07:00

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!

2009-06-12T20:41:00.001-07:00

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

His fingers and bear.

2009-06-01T11:23:00.001-07:00

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

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

Promised Pictures

2009-05-30T09:41:00.001-07:00

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

2009-05-29T19:32:00.000-07:00

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.

Relief and Recovery

2009-05-20T20:52:00.000-07:00

Christopher is doing great. He isn't crying nearly as much as he used to. His arms splints are off and he has discovered that he can suck on his fingers (with a little bit of encouragement from mom) in order to comfort himself and is on the road to full addiction. :) I have introduced a lovely little bear that he only gets during nap time which serves as his que that it is time to sleep. He sticks his fingers in his mouth, wraps his other arm around the bear, rolls to his side, and goes to sleep. It is fantastic!! Things are getting much easier though it can still be hard at times. Although, I think that has to do more with the business of four boys than it does with him.

His scar looks great. It is healing well and he has a beautiful lip. He recently found that he could pull his lower lip in his mouth and suck on it. Very cool since this is not something that he could have done before. Hopefully new pictures will be coming soon.

Smile For Your Closeup!

2009-05-12T08:09:00.000-07:00

I know this is shocking but here's a photo of my child that shows what's going on (or not going on) inside his mouth. We posted this so everyone could REALLY understand what a cleft palate is. Taken the day before his first surgery, this is what it looks like when you don't have a roof in your mouth. The first operation repaired his lip, the roof will be installed (from what I understand) between 6-9 months of age.

A new lip!

2009-05-07T15:12:00.000-07:00

Matthew loves his little brother.

The doctor did a beautiful job on Christopher but the crying has been a hard to deal with. The beginning of the week was great but the past 24 hours has be extremely difficult. Lots and lots of crying and very little will soothe him. Poor guy. No more codeine and tylenol just doesn't seem to do the job. I wonder if he is just angry since he cannot pull his hands to his mouth Here are a few pictures taken by me. Sorry they aren't from the pro. Well, he is crying again so I better go get him.

He is a trooper

2009-05-04T11:24:00.000-07:00

Chrsitopher has done much better than we expected though I haven't done so well. I miss his smile and I feel like he lost a part of his personality. I know it is temporary but it strikes a sad chord in me. He is sleeping great, of course the codeine helps, and is eating pretty good. Every once in awhile he skips of feeding either cause it hurts or he just isn't interested. We have had about 2 crying episodes but nothing that a little bit of walking around won't soothe.

He doesn't seem to be bothered by the arm splints as long as we don't put them on too tight. The first morning he woke up in his crib one hand was twice as big as the other! Whoopsie....I thnk we restricted his blood flow a bit. =) Good thing his hand wasn't purple. Whew, that was close. Anyway he has been a trooper and is doing great.

Eating Again!

2009-05-02T18:04:00.000-07:00

Christopher is eating again! He's doing great, he's not in pain when he eats (thanks to the Children's Tylenol with codeine) and he can hold his little hands together! If you've been following this blog you know that he holds his hands when he's content! So it hasn't been as difficult as we thought it would be. Of course, we're only two days after surgery, but hey, we'll take it! He doesn't seem to miss his pacifier, he's not crying much and he's fallen back into his normal schedule. Yay!!!! God is so faithful!!!

Coming Home!

2009-05-02T08:50:00.000-07:00

We knew he would come home today but it is good to write it down. I have had 2 great nights of sleep at Ronald's house. I feel rested and ready to go home. Christopher is eating better and they will be discharging him late this morning. Eddie is on his way back to the hospital, he had to work yesterday. Once he arrives I am sure he will be snapping some more photos to post on the blog but 'til then you have to deal with my boring text. The nurse just arrived and I gotta jet. thanks for keeping posted and for all the love you send our way.

Rough Hour

2009-05-01T20:55:00.000-07:00

Oh boy! I just got a taste of what it is going to be like at home. He has to have his tylenol with codeine every 4 hours or he really gets fussy. He ate really good around 6pm and I just tried to feed him again around 8 but it didn't go over well. All his meds had worn off and he was winding up fast. It can be diffucult to hold a baby that has wires coming out of him from all direction and is not only super strong but loves to kick Well needless to say after I finally got comfortable in a hospital chair while holding him, which isn't saying much, he kicked his IV out with the opposing foot. He started gushing blood all over me and it was quite the event. Well, at least now he should get pretty thirsty and want more of his bottle. I guess I should head back to Ronald's house and changed my clothes since they are covered in spit up and blood. There is no service there so I am out for the night. =)

He needs to eat

2009-05-01T14:17:00.000-07:00

Well here I am sitting in the hospital while Christopher is sleeping , or rather out cold from the drugs. I have tried to feed him several times but he won't really have anything to do with it. He will not be able to come home until he is eating well. I spoke with the nurse and she said that it takes about 24 hours from the time of surgery until a little guy like him shows interest in eating. I have a felling I won't be going home until tomorrow. I'll probably be spending another comfortable night at Ronald's house =). Anyhow, the time he did drink a few squirts of milk his lip doesn't seem to bother him but rather the swallowing itself. He got tubes in his ears so I am thinking that is causing him to be uncomfortable when he swallows. The frustrating part is that he can't tell me where it hurts, poor guy. Please pray for him and that he is comfortable enough to eat soon so we can go home tomorrow as a family. I am sure we will but your prayers are coveted.

Recovery

2009-05-01T09:04:00.000-07:00

Stiff arm splints keep him from grabbing his lips.

Things went great for Christopher! These photos were taken two hours after surgery. His face is currently swollen, taped and stitched, but seeing him safe was such a relief. He's on lots of pain reliever, falling in and out of sleep. Carri and I are exhausted as well, so we're heading off to bed across the street, courtesy of the Ronald McDonald house (thank you Ronald!).

I experienced sadness for my son for the first time when I saw him crying in the recovery room. The velcro arm splints prevent him from touching his face (and grabbing his lips). He finds alot of comfort in sucking his fingers, so bye bye instant comfort. He was laying there crying and I just wanted to scoop him up, but I couldn't. Thankfully his pain medication is in full swing, so his crying lasted only a minute or two.

Pre Op

2009-04-30T16:37:00.001-07:00

Isn't his hospital gown sweet??!!

As I post this we are sitting in the waiting room, waiting for Christopher's first surgery to be over. Thanks for your prayers, by God's grace he did great (no crying) waiting for his surgery on an empty stomach, he couldn't eat for 4 hours and he remained cute the entire time. Carri and I are both trying not to fall asleep. Sponge Bob is on in the waiting room with a big "Do not change the channel" sign underneath the TV. We finally get a break from watching our kids for a few hours and cartoons are on. Great.

I'll let you know how it goes....

Eddie

Lord have mercy

2009-04-21T12:43:00.000-07:00

Surgery is 10 days away and I am becoming a bit anxious. At last weeks pre-op the doctor said that the week after surgery is going to be extremely rough. He is not allowed to suck on a pacifier or his hands, both of which he LOVES, for TWO weeks. I was given a pair of splints that will wrap around his elbows so that he cannot bend them and bring his hands to his mouth. I expect he will be crying alot and that I will be holding him constantly. Unfortunately Eddie has to work the day after his surgery since it is a wedding that has been scheduled for quite some time now. We can't exactly ask the bride to reschedule :) Oh to have a regular job! Please pray for God to have mercy on Christopher and our family as we prepare to cope with the aftermath of his surgery. Pray that it will not be as awful as the doctor has told us it will be. Thanks a bunch.

Taping Progress: 5 Weeks

2009-04-17T21:20:00.000-07:00

Before

After

The top photo shows Christopher's gums protruding before we started using the tape, photo 2 shows some progress - the bone has been pushed back a bit after five weeks of taping. Our recent visit to the doctor was encouraging, he said that we are doing a great job on the taping and that it will really help the surgical process of reconnecting his lip. Yea!

The surgery has been moved to Thursday April 30th. We're looking forward to what he is going to look like after the procedure. From what we've seen from other cleft surgeries, it will probably be pretty messy, but after the wounds heal he should be fine.

Sweet Little Bundle

2009-04-09T20:31:00.000-07:00

Isn't he sweet? You'd better say yes.

Little Laughs!

2009-03-27T07:57:00.000-07:00

First laugh and we got a picture of it!!!

Oh how sweet he is today (okay and every other day too!) He laughed for us this morning. It was short but sweet. We actually got the camera out to take a picture of his hands. He holds his hands together when he is content and calm. When Eddie put the camera up he laughed and it was captured!

Also, I haven't posted an update from the last time we visited the surgeon. We saw him last week and he said the tape is working. It is pushing the bone back efficiently so we will not have to take more drastic measures. Yeah! We will see the him again on April 15th for his pre-op appointment and then go in on April 21st for his first surgery. After the surgery Christopher will probably stay in the hospital for 1-2 nights and hopefully we will be able to stay in Ronald Mc Donald house as a family. We will see. I need to put a request in.

Sweet Smiles!!

2009-03-17T08:40:00.000-07:00

Christopher is smiling! Just in time for spring! Daniel has been smiling for a long time, but more so now that he has a sweet little brother to love.

Tape & Monitor

2009-03-09T22:34:00.000-07:00

In preparation for his surgery, the doctor recommended to strech a large piece of medical tape across Christopher's upper lip and his cheeks. The purpose of this is to put pressure on the part of his gum that is protruding and push it back. His bones are so pliable at this age that a simple piece of tape will do the job. His first surgery is scheduled for April 21st.

This is the portable monitor that Christopher is now hooked up to whenever he's sleeping. It has a battery so it works in the car, stroller or anywhere else. The doctor wanted to monitor him as a result of the possible apnea incident (see the "What a Day" post). If his breathing or heart rate become abnormal an alarm goes off and we come running. It has gone off a few times due to a bad connection, but thankfully Christopher hasn't had any repeat scares since the other morning.

And I thought the last day was crazy!

2009-03-06T12:52:00.000-08:00

Well you know Christopher stayed the night at the hospital Thursday night. So I called yesterday morning to see when he was going to be discharged. I made it a point to let them know I am 1 1/2 hours away so please call me when they know for sure he will be released. I got the call at 10:50 and was able to get out of the house around 12 noon. Perfect. The three older boys and I planned on picking Christopher up and then visiting Eddie's family who have never seen him. Things NEVER go as planned when you are at a hospital. I thought I learned that lesson when I brought him home from the NICU. Guess not. We were there for 8 HOURS, yes 8 HOURS, waiting to bring him home. Remember I have three boys with me and I brought NOTHING for them to do. It was a challenge to say the least. What was the hold up you ask? A sleep apnea monitor. When the doctor came to speak with me and I shared my entire story (for the hundredth time) about what happened to Christopher last Monday he decided to order the monitor. Well since he ordered the monitor we could not go home until we had one and they don't give them out at the hospital! AGH! That's okay I figured, we will go to Mc Donalds for lunch which we NEVER do, but since it is IN the hospital I thought, "Why not?" We had lunch did a few other things around the building and when we returned to his room we were informed that it was going to be quite awhile. Great! Well we literally hung out in the room for the next 4 hours. I was told that since it was so late in the day that we may not even get the approval from our insurance on time. Oh man that got me praying. Right after my prayer the case manager came in and told me it went through which rearely happens that late. God is SO good. Anyway, this is long and I need to stop. We finally got the machine at 8:30 and left at 9:30 and we were all fried.

I promise pictures are coming soon. For sure by tomorrow afternoon. Pray for our endurance.

What a day!!!

2009-03-05T10:00:00.000-08:00

Yesterday we had Christopher's first cranialfacial surgeon's consultation. It was great. The first step he recommended us to do is strech a large piece of medical tape across Christopher's upper lip and his cheeks. The purpose of this is to put pressure on the part of his gum that is protruding and push it back. His bones are so pliable at this age that a simple piece of tape will do the job. I will post pictures when he comes home from the hospital. Whoops, forgot to tell you about that part. Hmmm where do I start? Well, on Monday something strange happened. About 20 minutes after I fed him he let out an abrupt sharp cry. I knew something was wrong and I had Jesse pick him up since I was busy. He seemed fine so I had him put him back in his bouncy seat. I went over to him not but a minute later and when I picked him up he was ash white! I have never seen anything like it. Even his lips and gums were colorless, like the color of fog. The only thing that kept me calm was that he was breathing. He was in a deep sleep and limp as a doll. I just kept telling myself, "he's breathing...". I held him for a full hour after that and slowly watched his color come back. WELL, when I mentioned that at the appt (thanks to my trusty friend Kristy who reminded me) they decided to admit him and look for sleep apnea. So without anymore details, because there are WAY too many, they admitted him yesterday. I am expecting to pick him up today and will get pictures up asap.

" You are amazing!"

2009-02-08T15:19:00.000-08:00

NO, God is amazing! SO many people have told me that I am doing an amazing job and that my response to finding out about Christopher's condition has been incredible. Yes, this is all true but only by the grace of God. It has been a great adventure from the beginning and I would do it all over again. There is still so much to look forward to and I am so glad that God has intrusted my family with such a challenge. God is so faithful to strengthen us in this time, even in our unfaithfulness.

God also prepared us for this challenge by giving some friends of ours the challenge first. Four years ago our friends, Erick and Sandy, had a daughter with the same defect, though I do not know the extent of her cleft, and and today she is doing great. We knew what Christopher had right when he was born and were comforted by those who had gone before us. So, yes we are doing great but only because God is the greatest.

Weight Gain

2009-02-04T22:09:00.000-08:00

Today Christopher weighed in at 8 lbs 6 ounces! We are so happy. We also have scheduled our first plastic surgery consultation for March 4th and look forward to learn about the process of his lip repair. Until then keep posted for cute pictures and more growth progress. Thanks for all your wonderful prayers.

Little Big Brother

2009-02-02T20:11:00.001-08:00

Ear Tubes and Insurance

2009-02-02T14:43:00.000-08:00

Hi everyone. Thanks for keeping posted. I just visited the ENT (Ears, Nose, and Throat doctor) and she said that he will have to have ear tubes inserted during his first surgery. I guess with his condition fluid can easily build up in the inner ear and tubes are required to keep it drained. This is SO minor compared to all the other treatments he will have to under go.

Also, this is not something I posted in the past but we were VERY concerned about our insurance coverage. We found out some grave financial news about week after he was born. Well, we have come to find out this week that he is fully covered and we will be able to receive care for him down in San Diego instead of Riverside. Riverside has a great team for cleft palate patients but we are unfamiliar with them and want to remain with those we have already become aquainted with. We are so thankful that Christopher was approved for the insurance we applied for and that all his care will be in SD.

Counting Calories

2009-01-29T20:13:00.000-08:00

I spoke with the plastic surgeon's nurse today and she was not pleased with Christopher's weight gain. He is not unhealthy but she wants him to get as many calories and nutrients as possible. Her reasoning is when he has surgery he needs to have maximum ability for tissue repair. Therefore I have been instructed to keep a tight log on how much he is eating, how long it takes him to eat, and if it is an easy or difficulty feeding. This will help keep track of his calories. As I have said before if it takes him to long to eat he is not absorbing his food efficiently and if it is a difficult feeding he could be burning too mnay calories. He needs to be eating 19 ounces within a 24 hour period of time and each feeding should not take longer than 20-30 minutes. He also is not allowed to go longer than 4 hours at night. Oh boy, I need to start setting my alram! Last night he went for 6 hours. There goes our sleep again...not that we ever really had it back :). I need to report back to her after his next weight check, which is on Monday, and she will tell me if we need to increase his calories or not.

Come on already!

2009-01-27T14:48:00.000-08:00

We just got back from Christopher's doctor and he gained a whole 2 OUNCES in a week! Whoopie! Seriously, I have never had a rollie pollie baby and I do not think that Christopher is going to be any different. All my boys have been lean muscle machines. Maybe if he would stop filling up his diapers and start hanging on to some of those ounces he would fatten up! LOL! Anyway, he is doing GREAT and eating like a champ (not that anyone would know) but just taking his sweet time to gain weight. Oh well, we will wait patiently and trust that God has his perfect timing. We will continue to go in for a weight check weekly until.... uh, actually I don't know but will keep you all posted.

Two babies?!

2009-01-26T10:30:00.000-08:00

Oh my! My four year old, Daniel, came to me yesterday and said, "Mom, I want two babies!" Surprised I asked, "Why?" His response, "So that when they get bigger they can be friends!" How sweet is that. I then came to find out that he told Eddie first and Eddie said, "Tell mama that!" HAHA!

We are all getting better and Christopher seems to have escaped any sickness. I can tell he is getting bigger and look forward to his weight check on Tuesday, oh, that would be tomorrow.

What a Sick Family!

2009-01-23T20:53:00.000-08:00

Here is our families perscription drug collection! If you've read the previous posts, you know that everyone is sick except for Christopher. Please pray that he remains well.

Humbled!!

2009-01-23T15:57:00.000-08:00

We are truly humbled by the love and support we have received from friends and family. It overwhelms us. I have not cried as much as I would have thought but when I read everyone's comments and e-mails sent to us it does move me to tears. The other day a verse came to my mind, "The effectual prayer of a righteous man accomplishes much!" Truly your prayers have been felt as God gives us strength to get through this trying time. Thank you so much.

Memories and pictures

2009-01-23T09:45:00.000-08:00

When Christopher was first born we were totally surprised. We had no idea of his defect. I remember the nurse looked at me and said with indignation, "Who did your ultrasound?" She was mad for me and that I was not prepared. The doctor said she was going to call that facility to inform them of the oversight. I thought, "Ooooo, busted!" She then proceeded to say, " Well at least he can grow a mustache!" Real comforting lady, haha. We did laugh but I wonder what she would say if it was a girl!

During labor we had been considering the name Jack but when Eddie first held him he jokingly said out loud, "He is all jacked up!". So much for that name, LOL!

When the older boys arrived to the hospital Christopher was already in the nursery and they were only allowed to peek at him through the window. Daniel, my four year old, was the first one to respond. He said, "Ahhh he is cute" but when the nurse picked Christopher up and turned him to face the boys Daniel's next response was "What the?". Matthew then chimed in and said, "We can call him big nose or chicken lip?" Gotta love my husbands humor flowing through my sons. Well at least they aren't bothered by him and love him just the way he is.

Well I know there is more funny stuff that happened and I am sure Eddie will post some memories of his own but for right now I need to post this for my own relief. It was another night full of screaming last night.

Stressful days!!

2009-01-22T16:02:00.000-08:00

The past few days have been a bit rough. I think everything is catching up with us. Everything being, the delivery, the commute down to San Diego the first week, my recovery, Eddie's recovery from a month long sickness which ended up being bronchitis, the three older boys getting fevers and bronchitis the day after Christopher arrived home, long feeding sessions with Christopher, late nights, little sleep and so on.

The hardest thing for me on top of all I just mentioned is that two days ago Christopher stopped eating well when I fed him. Sometime in the past week Christopher has really taken to Eddie feeding him and screaming at me when I feed him. Of course this would be great if Eddie didn't have to work but someone has to make money. It has actually been an emotional blow for me and something I have had to work through. We decided that Eddie will no longer feed him for awhile so Christopher and I can relearn how to work as a team when I feed him. It is a delicate process where we need to work in unison. It is important that he is able to drink his full bottle under 30 minutes so that he puts weight on efficiently. Any longer than that and he is burning too many calories while he is eating. We want him calm, relaxed, and into a continuous drinking rhythm while being fed. Sounds simple but with his condition it can be tricky. Try to swallow with your mouth open without touching the roof of your mouth with your tongue. That is what he goes through every time he drinks his milk. The last two times I have fed him today he has eaten like a champ. Let's hope he keeps it up.

Packin' on the Ounces

2009-01-19T20:45:00.000-08:00

Today Christopher visited his pediatrician for the first time, and all is well!!! He's gained weight since he left NICU! We will be visiting the doctor weekly to monitor his weight, but we will be monitoring his sweetness every day!

Jesse, his older brother, has been sick with a fever since Christopher arrived home, and he is extremely sad because he can't hold his new baby bro. Daniel is sick as well, but could care less (let's be honest here, what 4 year old wants to hold a baby?). Please pray for Jesse and Daniel's health. Obviously Christopher runs the risk of getting sick, losing weight and going back to the hospital. If that happens we'll be bummed because he's just so darn cute!!!!

Get Comfy!

2009-01-17T21:52:00.001-08:00

Look at my baby's sweet feet!!! As you can read in the previous post, Christopher's first day home was very eventful with his brothers getting sick, but in spite of it all, he's lovin' his new home.

I was hoping to go to church tomorrow to say thanks to our friends for all the support we've been getting (actually I'd need to go to 5 or 6 churches to thank everyone), but with Daniel and Jesse sick, I'll be here with Carri and the boys.

Thanks so much, we look forward to seeing you all in the near future!!!

- Eddie

HE'S HOME!!!

2009-01-17T13:26:00.000-08:00

Christopher and I arrived home at 11:00 pm last night. I got to the hospital at 2pm yesterday and hung around for them to discharge him. Needless to say it was a very long and tiring day, especially since I was alone because it was Eddie's first day back to work. Gotta love the timing. Anyway, he was a little turkey last night and screamed from 12 midnight to 2am. I was so tired that I decided to cry with him :)! Eddie could not help out because he needed his rest for the wedding he was shooting today. Again, gotta love the timing. Well I rested some this morning and don't feel too bad today. The boys adore him and want to love on him. Unfortuantely around lunch time I discovered my 4 year old, Daniel, has a 100 degree fever and is getting a pretty bad cough. Did I say, "Gotta love the timing!"?

We obviously haven't had time for pictures but they will be coming. Thanks for keeping posted, posting your comments, and keeping us in prayer. We are so thankful for all of you!

Bummer.

2009-01-16T10:12:00.000-08:00

He lost weight again over night. It was only a tenth of a gram but he needs to continually gain weight before he can come home. Sometimes they make exceptions and he could be one since he is otherwise very healthy and eating very well. We will see. Hopefully by the end of the weekend he will be home but I guess I shouldn't hold my breath.

All by Himself!

2009-01-15T23:30:00.000-08:00

Today they took the feeding tube out and Christopher is getting everything he needs through a bottle. Yeah! His has finally put weight back on (he lost some like all newborns do in the beginning). Once he puts more weight on and we get the "all clear" he can come home.

The nurse said that he is extremely healthy and very strong and that there are no other problems going on with him. Oh yeah, he also passed the hearing test in both ears. This is huge since the open cavity can extend into parts of the inner ear.

I found out that his first surgery, his first lip repair, cannot take place until he is at least 10 pounds. My babies don't normally get very chunky so please pray that he fattens up fast.

More Photos From Day Four

2009-01-15T14:09:00.001-08:00

Feeding Christopher

2009-01-14T22:01:00.000-08:00

See that little tongue sticking out of his mouth? It's actually his upper lip.

Today was a great day. When we arrived at the hospital we discovered that Christopher had a feeding tube and yet they told us they were going to teach me how to feed him with a bottle. The Occupational Therapist arrived immediately after us, showed me how to give him a bottle, gave me some tips, and let me feed him. Surprisingly he uses a normal orthodontic nipple. It was fantastic. They suggested that we stick around all day so that I could give him a few more feedings. The more Christopher and I learn to work as a team in feeding, the sooner he will come home. I fed him three times throughout the day and each time he ate more. By the end of the day they disconnected his IV because he was getting enough fluid through the bottle. We are hoping to take him home VERY soon. He is doing GREAT and we are looking forward to seeing the tube come out, tomorrow would be cool.

Where's Our Brother???!!!

2009-01-14T21:36:00.001-08:00

The Roman boys are wondering where the heck their new brother is!!! Who cares about all that stupid hospital stuff, bring him home!!!! These little fellas don't totally understand what's going on, but they are doing their best to be patient. The hard part for me as a father is to remember that my responsibility isn't just taking care of Christopher, it's taking care of these guys as well. This week has been a blur of hospital visits and "parents only" meetings with doctors, so the boys have been shuffled from one friend to another. We are so very thankful to all our great friends who have offered to watch the boys, but it's been hard to be away from them so much. Please pray that this blur of a schedule would end soon and the boys would return to a normal schedule, so our family can be together again.

- Eddie

Four Weeks Out

2009-01-14T13:33:00.000-08:00

I spoke with the plastic surgeon that has been assigned to Christopher. He said that the first surgery will be done in 4-6 weeks. That operation will be to attatch his lip and bring his nose down. In about 8 months there will be another surgery to begin fixing the roof of his mouth. More like installing a roof as opposed to fixing it, but whatever...!

Daddy's Boy

2009-01-13T22:41:00.000-08:00

Yesterday we were able to spend time with Christopher in NICU. It was sweet to cuddle with him, smell his sweet skin and hold him close. We still don't have much information as to when he'll be coming home with us. Right now we're taking advantage of the opportunity to rest up before the work begins.

The little hat Christopher is wearing was made by volunteers who donate their time for kids with birth defects. How sweet is that???!!! It reminds me of all the friends and family who have already given their time to help us in one way or another. You really learn who your friends are when you go through a trial, and it's been awesome to see everyone being so great to us. On behalf of Carri and the boys, I'd like to say thanks!!!

Encouragement

2009-01-13T15:35:00.000-08:00

Here's a blog I was directed to that really encouraged me. It shows before and after photos of a child who was born with a similar birth defect:

Rachel's Journey

Welcome Baby Christopher

2009-01-13T10:38:00.001-08:00

We are so proud to welcome our new sweet baby boy into this world. He ws born on January 11 at 6:00pm weighing 7lbs 15oz and stretching 19 1/2 inches. His name is Christopher Jotham Roman. As you can see he was born with a major defect known as a "complete cleft palette", which means he is missing his entire soft and hard palette, as well as his upper lip. We were definitely surprised as this was not detected on earlier ultrasounds. We were even more surprised by our reaction. We can honestly say there was not an ounce of sorrow experienced. The Lord has been an amazing source of strength and joy as we marvel at this precious little gift we have been given.

Christopher's condition restricts his ability to both suck and swallow and therefore cannot nurse or take a regular bottle. Because of the severity of his condition he was transferred to San Diego's Children's Hospital the night that he was born. The hospital where we delivered was not equipped properly to feed him and care for his special needs. He has been receiving all his calories through his IV until this morning. The specialist was able to feed him 32 ml of formula. That is great news!! The sooner he learns to eat well on a regular basis the sooner he comes home.

Well, that is it for now. We will continue to post pictures and updates on his progress. I must go rest and let my body recover so I am in tip-top shape for when he returns.