Fathers Point of View

Being a father of a child with a birth defect is much different than being a parent of child who is born normal.  The education needed to understand how to deal with the abnormality, the process of requesting the assistance that has been assured to us by the medical community and the state.  I already have spent over 40 hours alone on paperwork, social workers and phone calls just for the assistance.  To say that this experience has been overwhelming would be an understatement to say the least.  When i decided to write this blog i wanted to give the fathers point of view in regards to all the above and everything else relating to my son Nathan.  However, after only a month and half of my son being on this earth i want to do more... 

We are lucky as a family, we have good insurance that covers my son, maybe more than the next family.  Not every family is as lucky as mine.  I want to be able to help. assist other families who are less fortunate than mine to get the same medical options as my family.  The only way to be able to assist and make that work is through raising money and awareness both locally and nationally.  In the coming weeks i will be posting information about MiCleft the Michigan Cleft Network which is the he ONLY tax-exempt network that advocates for Michigan families affected by facial differences, and not the specific teams that service them...  I am hoping to partner with them and help raise as much money as we can so that we can help ALL kids regain some formal of normal due to this birth defect and other facial differences.

I have attached a link to  MiCleft -The Michigan Cleft Network


Stay Tuned and Happy Holidays

"Its Been A While"

Its been a while since I posted on this blog, but with a newborn son its been hard to get anything done...


So a lot has happened over the last few weeks that has been great.  We brought Nathan home on November 1st and when we brought him home he still had a feeding tube in.  Shortly after getting him home we were able to remove the feeding tube and feed him exclusively through the haberman bottle.  He has been able to go from 43 ML of formula to just over 3 ounces of breastmilk per feeding since we brought him home over 3 weeks ago.  He came home weighing in at 6 lbs 5 ounces and now he weighs 7 lbs 6 ounces.  So he is gaining weight at a good pace right now as we start preparing for the first round of surgeries.

We have decided to work with The Cranofacial Institute of Michigan for Nathan and we met with them here back  2 weeks ago.  They set us up with an orthodontist out of Clinton Township who will place a special device called a latham device that will be place in his mouth with screws.  It will slowly start to pull all the parts of the mouth closer together so that its easier for the surgeons to work.  They will put this device in sometime after the 1st of the year when Nathan is at least 10 lbs. 

So with the holidays coming soon I wanted to wish everyone a safe and happy holiday season. 

What is Cleft Lip & Cleft Palate?

The following blogs will take a closer look at the definition of Cleft lips and Cleft Palates and be more informative to you the reader.  It will have pictures of different types of cleft lips and cleft palate. 

So what is Cleft lip & Palate?

Cleft lip (cheiloschisis) and cleft palate (palatoschisis), which can also occur together as cleft lip and palate, are variations of a type of clefting congenital deformity caused by abnormal facial development during gestation. A cleft is a fissure or opening—a gap. It is the non-fusion of the body's natural structures that form before birth. Approximately 1 in 700 children born have a cleft lip and/or a cleft palate. There are different types of cleft lip and cleft palate.  

Incomplete Cleft Lip- A cleft on one side of the lip that does not extend into the nose is called unilateral incomplete.-

Nathan has what is called a Bilateral Cleft Lip Complete, which is extremely rare.

Complete Cleft Lip- A cleft on one side of the lip that extends into the nose is called unilateral complete

Cleft palate - Cleft palate occurs when the roof of the mouth does not completely close, leaving an opening that can extend into the nasal cavity. The cleft may involve either side of the palate. It can extend from the front of the mouth (hard palate) to the throat (soft palate). Often the cleft will also include the lip. Cleft palate is not as noticeable as cleft lip because it is inside the mouth. It may be the only abnormality in the child, or it may be associated with cleft lip or other syndromes. In many cases, other family members have also had a cleft palate at birth.

More than 4 million babies are born each year in the United States and that means 5417 babies are born with cleft lip or cleft palate in the United States.  There is still no clear cut reason as to why babies are born with these abnormalities. 

Over the coming days, weeks and months I will be posting more information about these birth defects and how there affecting our family.  Please contact me anytime with any questions, comments, or concerns that you have about this blog.  

Resources Used for this article

http://www.chw.org/display/PPF/DocID/21809/router.asp

"Baby Nathan is Finally Here"

At 12:30 PM today Baby Nathan was born weighing in at 6 lbs 8 ounces and 20 inches long.  He is the most handsome boy ever and i couldn't be any prouder at this moment.  As soon as baby Nathan was born he was carried away so the NIC unit could take care of and make sure that he was ok.  After a few minutes i had a chance to see my son.  He was doing great and he had a lot of hair and i mean i full head. 

Nathan definitely has a cleft lip and palate and what we found out is that the palate is completely gone and his nasal cavity is completely exposed. This means that my son will have to be in the NIC unit until they can monitor his milk intake and make sure that he is doing well feeding. They just put in a feeding tube a few hours ago and he seems to be doing fine with the tube in.  We will have the cranio facial consult tomorrow and hopefully we can have a plan put in place that will allow Nathan to come home sooner than later. 

Bianca is doing great and is currently resting.  Thank you for all your support and prayers during these last few days.  Your prayers are what helped and will continue to help us.

Thanks again

"It will only be a few hours"

We're only a few hours away from welcoming Nathan into the world.  We're also have this unsettling feeling about this birth versus the birth of our daughter Briana.  They will have the NIC (Neonatal Intensive Care) unit team in the room at delivery to assist with any complications if they arise.  This is something that were definitely not used too since we didn't have to worry about that with Briana as well.  None the less we're very excited to welcome Nathan into the world and our family.  Please say a prayer for us as we wait for the birth of our son Nathan.  Thanks again and stay tuned as we will update this when our son is born.

A Waiting Game

The waiting game is something that i don't do very well and with only a few days to go it is very tough to stay patient. My wife says OUCH every 8 seconds and she is tired of me asking if she is OK. However, i keep telling her that if she didn't say ouch that i wouldn't ask her if she is OK. None the less this is the worst time of her pregnancy for me as we're in the last phase. We just can't wait to welcome Nathan into the world. Please stay tuned as i will be updating the blog during labor if my wife lets me. Also i will post pictures as soon as i have them.

With Love Jonathan
A Fathers Story

University Of Michigan

All parents want the best for their kids, the best clothes, the best schools and for us the best doctors. We recently went to the University of Michigan and sat down with the staff of the Craniofacial Anomalies program. The appointment was by far the best appointment that we have been to yet. The nurse practitioner was able to reassure us that the extremes rarely happen and the most common cases of Cleft lip and palate are very manageable. She also explained to us that the entire team will meet with us over the next few months and come up with a game plan for Nathan. This entire process has been tough on my wife and I and after having the appointment at U OF M, we felt so much better...

Stay Tuned because baby Nathan is going to be born in a few weeks...

With Love Jonathan
"A Fathers Story"

"Testing our Faith"

50 years ago we wouldn't even dream of knowing the things that we know now and since we have the technology that we do often times with the good comes the bad....

In my last post i talked about how excited we all were in regards to the news that we were having a baby boy. The one thing that i forgot to tell you was that the technician told us that we need to come back in a week so that we can get some clearer pictures. She said that she was having a hard time seeing his face because his hands were in the way. So today Bianca went back to the hospital where the redid the ultrasound so that they could get better pictures of our sons face. My wife called me at work shortly after the appointment in tears and she said that hospital set up another appointment the next day with a Neo Natal Specialist. At this point we were very scared to say the least. Bianca and I went to the hospital and sat down with the doctor. He looked at both of us and told us that Nathan has a cleft lip and possible a cleft palate. He also said that we have 2 vessel umbilical cord. Which by itself means nothing, but with the cleft lip might mean that we have some chromosomal issues. He issued an amnio test which draws amniotic fluid from the uterus and can determine whether an unborn child has down syndrome and many other chromosomal anomalies. As soon as the doctor started explaining all of this too us i looked over at Bianca and she was just crying and was in total shock. We left that appointment with the "wind taken out of our sails" in a matter of speaking.

Over the next couple of days as we were waiting for results of the amino test, we started looking for answers as to why this was happening to us. We started praying for more answers and as I was praying, GOD told me not to look at why this happened, but look at what can come of this. GOD has a plan for all of us and the plan for our son is very clear. He is a "GIFT FROM GOD" that's why we chose his name and that's why GOD is giving us the strength to carry on and do whatever we can to make Nathans life the best we possible can. GOD would never given any of us more than we can handle and even though this is a tough situation for us to be in, we will find ways to deal with it. We will get the best doctors, surround ourselves with friends and family and we will continue to keep our faith in GOD Strong

The one thing that keeps me going right now is the following verse from Jeremiah 1:5 Before I formed you in the womb, I knew you, Before you were born, I set you apart; I appointed you a prophet to the nations. This verse gives me comfort that GOD knows what he is doing and that we all have a plan on this earth. My advice to anyone that comes across hard times is to continue to keep your faith, pray as GOD is always TESTING OUR FAITH and we have to do everything we can keep GOD in our lives.

With Love Jonathan
"A Fathers Story"

"Were having a baby boy"

6/23/2010- My wife and I tossed around many different reasons as to why we shouldn't know the sex of our unborn child, but I was finally able to talk her into it. I remember sitting in our 18 week ultrasound appointment and the technician looked at me and said "dad you're going to be happy"!!! I was beyond happy, I was ecstatic, elated, excited because not only was I going to have a son, but my family was going to be complete. Having both a boy and girl is something that every mother and father wants and it never seems to happen in the order that we want it. For us it happened in the perfect order. We left that appointment with both phones in our hands calling friends and family letting them know the great news. This news was especially exciting for Bianca's father as he never fathered a son and has 4 daughters. You can only imagine the joy her father felt as we told him the great news. Bianca and I were on cloud nine and there was nothing that would take that away.