My Baby Dominic

[gabbysmom04]

I just found this and am so happy for this board. I wanted to share my story of my son Dominic. My son was born on Nov 8th of 2005. We thought that we were having a healthy baby boy. When Dominic was born we found out that he had a bilateral cleft lip and palate. For my DH and I the world stopped. We were told that it could be fixed and not to worry. What I did not know was that he would not suck and I had to learn fast how to feed him. By the next day he was throwing up a lot. We were told at first that it was because of his cleft that he took in so much air that it made him throw up. The next day our son was taken for a reg. checkup in the nursery. When they came back there was a team of DRs who told use that they heard a heart murmur and that his stomach was swelling and that based on that and his cleft they told use that they thought he might not have a devoloped brain and that they thought that he had a fatal disorder. He was taken to the NICU where they brought in all sorts of DRs. They brought in a priest and told us it would be best to have a baptism. Soon after that my son started to vomit bile from his liver and was rushed into surgery. The surgery saved his life. He had suffered perforated bowel in utero, which has caused of of his bowels to leak into his body. He had a e coli infection from it. We found out later that he had a bleed in his brain, and three different heart conditions. Dominic spent two weeks in the NICU, one week was on a vent in a morphine coma. He has three operations on his cleft and looks like a perfect little boy. After months of working with him he is starting to walk and eating like a champ! This past year has been a horrible nightmare for my family. I am hoping to get myself of the floor soon.

 

[teacups]

I'd have to say that this boy is one heck of a fighter! ... and I'm sure if you weren't one before, you certainly are NOW! You have been through so much in such a short time. I hope this board can bring you some place to find a little comfort, joy and friendship. Although, with any child that age, good luck finding much time to write! Will Dominic be called Nick, Nicky or any of those nick-names? I like Dominic a lot!

 

[TruBlu]

I can't imagine what you have been through. My little one spent a little over a week in NICU and it almost drove me crazy. It was so hard to leave him after they released me. They had to drug me to get me to leave the hospital! So I know I've only felt a fraction of what you have lived. You must be a very strong woman!

It is fantastic that he is walking so soon! What a beautiful reward for all the love and care you have showered on you little angel this past year!!!

 

[Mackey Mouse]

Wow.....Dominic, I am trying to compose myself to type here.. God Bless him and I am so glad he is doing better. What a rough way to start, was he your first child???

I am so glad you shared your story on so many levels...They do all this testing now and was that not picked up on ultrasounds, just wondering.. Probably more on a personal level as my daughter is pregnant with our first grandchild and so I worry about that and worry about DH....and I just hope that all goes well for her and our new grandbaby. She is older too and that worries me..

But anyhow.. love to see a pic of him when you want to post one and give him a kiss for us.....he is in my prayers to continue to flourish...

Come here anytime and post, we are here to cheer, give hope, hug whatever anyone needs.. One more thing to you Gabby....take a little Mom time when you need it.. I hope you have some help that you just can get out for an hour for lunch with friends.. or shopping or how about a facial....just for you. You did good Mom.. Bravo...Dad too...

 

[gabbysmom04]

right now we are sticking with Dominic but his main DR likes to call him Dom. We also hav a 2.5 DD Gabriella who has suffered through this with us. She has been affected more then we ever thought possible. We have a social worker come to our house every other week to work with her. Thy both have speech every week along with a women who weighs Dominic every week. And for the past 8 months we have had PT for Dominics neck condition. A cleft goes way beyond looks!

Mackey mouse, I had around 15 ultrasounds because I am high risk. I labor my whole pregnancy. I also had an amnio (spelled wrong I think) and nothing picked it up. When we brought our ultrasound to our cleft team in NYC everyone could see the cleft. Sorry, I do not mean to scare you in nyway, most of the time they can pick up on it. It is after all one of the most common birth defects. I am going to get me DH to put a pick of Dominic on here as soon as I can.

Anyway, thanks for all the kind words

 

[Mackey Mouse]

I read what you wrote and I think back on when I was having my babies....a long time ago....there were no tests. We did hear the baby's heartbeat by a fetal monitor, but no tests...

Now, I am amazed at the testing they do. They tested genetically to see if my daughter's husband carried Cystic Fibrosis due to his French Canadian heritage....they are doing constant scans. I think next scan we may find out girl or boy. She is not doing the amnio as she said at this point, it is dangerous for the baby, two miscarriages, and she would not do anything anyway.. So what will be, will be.

I love the names of your sweeties, Gabrielle and Dominic....do post pics of them, we would love to see them both..

 

[rie'smom]

to you and your family. Dom is a tough little guy-what a fighter he's been already. One person's illness does affect the whole family. You are very smart to have brought in a SW for your daughter. God Bless and I'm glad that you've found this board!

 

[gabbysmom04]

thank you... As for our family we are a mess!!!! I am starting to wonder about DDs S.W. her advice is to just let her do whatever she wants. my DD is way beyond terrible twos she beats up her brother, screams yells and fights over everything. now this women is telling me if she spits to just let her. She can yell and scream and I should just let her run wild. I begged for help from early intervention because I was at the end of my rope. I need help to regain control not ignore what she does so there is no conflict.

 

[jann1033]

we have friends whose little boy also had a cleft palate..forget how many surgeries he's had( just had another ) but he looks great!
hope your little boy continues to thrive...
is your little girl's sw a child psychologist? if not i might see if i could talk to one. my daughter has been talking to one due to divorce and 2 1/2 yr old so we know how we can be best supportive and get her through this tough time with a minimum of problems...i would wonder about how it could benefit by not disciplining though...don't get the rational behind that. the psychologist she talked to was basically stressing stability and structure as the most helpful and so "ignoring it" just sounds different from what we've been told. the other grandparents do that ie don't set limits, she fends for herself pretty much ( they are just not real structured people in general) and it seems when she comes here after 2 days with them( i watch her 2 days a week they watch her 2 days) she is out of sorts for the part of the first morning and kind of out of her rhythm ( can't think how else to describe it)then settles down into "our" routine and is happy the rest of the time.

 

[Deesknee]

Happy to hear your little one is a doing so much better. My DS also sees a child physcologist. There is most diffently a difference between a SW or therapist, or even a licensed physcologist vs. a child physcologist. Sometimes they wear several hats though. You may want to find that out.

 

[cancer_survivor_06]

Congrats and Best of Luck with all of your feats with this. My dd3 has had her share of problems since the day she was born. We are working together to get through them and she is wonderful.

 

[gabbysmom04]

I am sorry it took me so long to get back on here.... DD is whining next to me as I type. I am not 100% sure what the SW other titles are. I am going to take her to see some DRs at the hospital they will do a full workup on her. I am hoping they might be able to help us a little better.

As for baby Dominic we had his 6 month EI eval where I learned he's gained only 2.9 lbs and grew 1 3/4 inches over the past 6 months. So off to the DR we go... They seem to think it is okay because he is growing on the curve. The last line on it! He is now the size of an average 7-8 month old, He is now 15 months old. It is so funny when people see him walk! He also has four teeth finally coming in. The two on the bottom look perfect! The two on the top are straight but are coming in through the back of the gums/palate. So off to the cleft team we will go. My DH is making the 6 hour roundtrip with Dominic so i can stay home with Gabriella to try to make it a special day for her.

I am going to start seeing a DR for PTSS (post tramatic stress syndrome ) I am hopeful that it will help me get past some of what we have had to deal with. It's weird he is doing so well now, and yet when i look at him on one hand I see this wonderful handsome little boy.But my heart is still trapped on Nov 10th 2005 thinking my son is going to die. It's had to explain to people that there are somthings in life you never get past....

 

[safetymom]

Gabbysmom04, thank you for the wonderful story of your baby and his survival.

It sounds like now is a good time to take some time for you. I am glad to hear you are seeing someone to help you deal with all of this.

Please come here and post. It really helps to write it out. We are here to listen and support you.

 

[gabbysmom04]

Thank you, it is nice to connect with other people who understand what it is like to be sick or love someone who is sick. people always tell me "he looks so good now you should be so happy" And yes he does look GREAT now, but that does not take away what he has had to go through. And what we as is parents have had to go through. The horror, the terror of being told your child is going to die is not something that I think you can ever really recover from.

 

[littleprincessmom]

Your son's story truly touched me and I hope and pray that I can offer some words of encouragement.

My DD (now 7.5) was born with several congenital heart defects. We had no idea - never occurred to me I'd have ANYthing but a healthy child- and it was truly the lowest point of my life. After a failed angioplasty at 7 days old where they basically lost her on the table, she was rushed into emergency open heart surgery (which was successful!) We were told that she would need additional surgeries within her first year of life and that she may suffer from various syndromes and mental retardation.

Her first year of life was H#LL! We were in and out of hospitals with
"failure to thrive", pneumonia, etc., etc., etc. She also was TINY and we measured every single ounce the child ate. At age 7 months, we were sent to a research hospital for genetic testing as our doctors belived that she likely suffered from at least one of several syndromes due to her strange combination of heart abnormalities. At age 11 months, they sent us back for a heart cath, planning another surgery.

To give you the readers digest condensed version of a VERY long story, our beautiful 7 year old first born is a gifted student who reads on a 5th grade level, is NOT mentally retarded, suffers from no syndromes that have been identified, and has had NO more surgeries to date (although we know that there may be more in the future). With her huge dark brown eyes and sweet smile, she and her little sister (DD 4) are the joys of our lives.

While I would NEVER wish the terrrible trials my child endured on anyone (especially my child!), I can say that that time of our life was also the greatest blessing that I have or likely ever will experience. It taught me that God truly is in control and that nothing and no one ever "belongs" to us. My daughter loves country music and every time we hear LeAnn Womack's "I Hope You Dance', I tell her that the song is for her!

Our best friends have a child that was born with a severe cleft palate and she has undergone 3 surgeries to date. She is now 5 and simply beautiful. She is an excellent soccer player and an absolute joy to be around.

From someone who has been there, hang in there, it will get easier ! There are NO guaranties but that is true for all of us. Enjoy your precious children - I'll say a special prayer for you tonight.

Blessings, Laura

 

[Mackey Mouse]

Doctors in these times can work miracles..I believe that their hands are guided by a higher power.. thanks for sharing your story here littleprincessmom, it touched my heart..

 

[JunieJay]

Sounds like Dominic is a little trooper. Bless his heart.

My brother's name is Dominic, and he's overcome an obstacle or two in his life too. Its a good strong name.

I'll keep this sweet boy in my prayers. Keep us updated on his progress.

 

[gabbysmom04]

Thank you for your kind thoughts! He sure is a strong little guy. I only wish i was as strong as my son. I have been feeling like I am falling apart and have just found out that i have post tramatic stress disorder. I feel like i am trapped in a nightmare!

 

[safetymom]

It sounds like you are strong. I am glad to hear you are getting help for yourself.