We need all the prayers we can get!!!

Britney - posted on 08/12/2010 ( 12 moms have responded )

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Ok so i have a son who will be 4 in September and a daughter that is almost 3 months. He was born perfectly healthy so when i found out i was pregnant again i thought it would be the same. After a pretty easy c-section she was born 7lbs 4oz. She took a little bit to breath but i was told that was normal for c-section babies. They also told me she had a heart murmer but that was pretty normal and would go away soon. When it didn't by the time we left the hospital they told me she needed to be seen by a cardiologist so later that week we went to see one at the children's hospital. They told us some pretty upsetting news, they said she had pulmonary valve stenosis and they would need to do a balloon procedure to try to open the valve. They also say something funny with her eyes and told us to go see a pedi eye doctor at the hospital. They also kept saying she had some odd facial features. I didn't quite understand this since she looked so perfect to us. The next week we went to her eye doctor and they said she had Coloboma in both of her eyes and that she was legally blind, more awfull news. They also kept saying she had odd features and suggested CHARGE syndrome, so we were told to see a genetic doctor. We went to see the genetic doctor and they had a few test they wanted to run because of her health problems and her odd features and told us it would take a few weeks to get the results. So we waited. She eventually went in to have the balloon procedure done (this was one of the worst experiences of my life.) My husband and I tried to stay calm and went to eat lunch, about one hour into the procedure we recieved a phone call from one of the nurses in the operating rooms that said they were not doing the balloon procedure and we needed to wait in the consult room so we did. The doctor came in and gave us some of the worst news anyone could ever get about their child. He said that she did not have pulmonary valve stenosis, in fact it was far more and much worse problems, i will not go into detail about what kind of problems it was but he said she would need open heart sergury by the time she was 18 months old. It devistated our family. The night i was at home awake with her and she stopped breathing so i had to stimulate her to get her to start. After about two times i woke my Husband and we called my mom to come watch our son and we took her to the hospital, after about a week there they fould out she had a floppy windbox and they needed to do sergury on it to fix it. We were very worried but relieved it wasn't more serious and could be fixed. Two days after the sergury we were able to go home. The day after we got home she started throwing up and choked, stopped breathing and turned blue. She did that two more times during that week but thankfully not since they fixed her acid reflux meds. We later found out from the genetic doctor that she did not have CHARGE in fact her chromosome abnormality was much more rare. In fact there are only about 170 cases ever diagnosed. She has Mowat-wilson syndrome, this explaines the health problems but has many more to come. Seizures, missing parts of the brain, mental retardation, may never speak and if she does it will only be a few words, may never walk, can never have children. We are now glad we found out what is causing these problems and what to expect, it has and will take a lot of time to deal with all that has and will go on but it is getting better. I don't want to sound selfish but i am glad i can take the blame off of myself, i thought i did something wrong. I know this is a long story but i am telling you this because for the almost three months my baby girl has been alive someone has been up with her at all times. I have stayed up with her all night up until about 9am so my husband can sleep and then get up at anywhere between noon and 2pm depending on what time an appointment is so i can still spend time with my son. I really do not want him to feel left out or neglected. I can count on one hand the times i have been able to sleep more than 6 hours a day or been able to sleep at night. It is really taking it's toll on me but i am so scared something will happen to her and my sleep is not worth it. All of this just really caught us off guard. I really need to know if there is anyone out there who is or ever has been in a similar situation. Or maybe someone can please tell me if im not crazy for doing this. Im sorry this is so long. Thank you.

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Michelle - posted on 08/13/2010

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Britney, my prayers are with you and your family. I will pray for your baby girl. God has a plan for her. She was put on this Earth for a reason. I really do believe this. It is hard to understand why this happens. God bless you all.

Eliz - posted on 08/13/2010

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I will keep you in my prayers. You are dealing with a very scary situation and the only thing I can tell you is to leave it in God's hands and enjoy every moment with your precious baby. I lost a child 2 years ago and have found how important it is to cherish every moment and take loads of pictures. You never know when your last moment together will be. Include your son in the care of his sister and take lots of pictures of them together. I'm sure she will grace your life for years to come but it's terribly important to enjoy every moment and gather memories. God Bless you as you continue to love and charish your children.

Carla - posted on 08/13/2010

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Father, Abba, You are God. You know what is, and what is to come. We know that many mighty miracles have been performed for people who trust in You. We ask, right now, that you touch Britney's little one. We ask for healing, physical, mental and spiritual for her. We ask for Mom, Dad, brother, Grama that You give them assurance, wild, crazy faith, that You will do exceedingly, abundantly over what we could ask or even think of. We know that, when Jesus was asked why the man was born blind, He said, so that you could see the glory of God. We are expecting to see the glory of God in this matter. Father, lay Your Hand on Britney right now, and give her peace. Let her start seeing improvement today. Give them rest for their physical bodies, and amazing peace for their spiritual, and let them stand assured, resting in You. In Jesus' Name, amen.



Britney, I sit here in tears. My mother had been told that if she allowed my birth to come about, that I would be blind, mentally impaired, crippled, you name it, I would have it. She went on, against all odds, and, while my health isn't great, I had 3 beautiful children, worked most of my life, and have been, for the most part, normal. I want you to start claiming peace and victory for your daughter. I want you to start seeing her running and jumping and laughing! I want you to see her healthy. I will keep you in my prayers, darling, please keep us informed.



God bless you all

Anne - posted on 08/12/2010

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Britney, I was born with a major heart defect in 1955 and had surgery to correct it in 1963. My mom kept a detailed journal of what I ate,when, how often I needed my diaper changed and why. She also noted how much I slept.

Is your baby a candidate for a Sleep Apnea Machine so you could get some sleep?

I will Keep You In my Prayers.

Amy - posted on 08/12/2010

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My prayers and thoughts are with you at the sad time. God will only give you want you can handle. I am legally blind and had other problems as well. I will send you a private message. I wrote my story on this Christian Mommies group Read Amy's story.

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Robbin - posted on 08/15/2010

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I am so sorry that your baby is soo sick. I don't know if you believe in GOD but if you do. Our prayers with be with you and your family during these trying times. I do not know what to say because I am not in your shoes but if I was I would want a lot of support and prayers.

Britney - posted on 08/15/2010

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thank you both. its not really the mental disabilities that bother me, or even the blindness. it is the heart sergury. the thought terrifies me to no limit. i know god has a plan and purpose for her i just pray it is to let her spend a long life with us. i could not imagine my life without my kids but with death staring me in the face with her it is much more than i can handle. im realizing to take it one minute at a time and to live,laugh, and love as much as possible everyday. again thank you both so very much.

Merry - posted on 08/14/2010

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Britney, I am not going to try to relate, because I cant. But I have to remind you that all the bad things they predict for her, might not be her future.
My brother was born with epilepsy and was on severe meds for a few months. We were told he wouldnt walk, talk, eat solids, that he would be retarded and maybe even blind.
His brain was damaged and deformed so this was his prognosis.
(we were his foster family) his adoptive family backed out because of this, so we decided to adopt him. He is 11 years old and he had spech therapy and eating therapy but he talks, walks, eats, smiles, laughs, and has no mental retardation at all! He appears perfectly normal.It was alot of work in therapy and he still has speach impediments, and his eating isnt the best but he is fine!
The drs have to give worst case scenarios and they have to warn you of every possibility.
But remember that her future isnt set by the Drs or by her condition. Its set by God. He knew from the day he created adam that she would be your daughter and he knew that this would happen. He also knew and knows how her life will come about.
Maybe he will allow her to go through these struggles, but he knows her future and he knows you can handle it.
No matter if she lives with disabilities or lives normally or even dies, he loves her and he will be guiding her path every day.
God knows how this ends up. And he will make certain that you are capable of handling anything that happens.
She has a purpose in this world.

Britney - posted on 08/13/2010

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thank you all for your kind words and prayers. i am really trying to leave it in god's hands but it is harder than i ever thought it would be. Elizabeth, i am so very sorry for your loss, it unimaginable and i will pray that you and your family continue to heal.

Britney - posted on 08/12/2010

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because of how well she is doing right now she does not qualify, we thought medicaid was going to pay for a pulse ox machiene to help but they won't so we are going to have to pay for one. i am sorry to hear about your heart problems but i am glad you are doing well now, hearing stories like yours gives me hope. thank you for your prayers.

Jill - posted on 08/12/2010

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oh my it sounds like you have your hands full.... my prayers go out to you and your family... remember God is in control ... and there are no mistakes and no one is to blame... God gave you this child cuz he knows you can handle her...and if it is His will he will heal her....

God i pray for a healing touch on this little baby ... we know that she was your little girl before she was Britney's and that you love her dearly .. you know the problems this family is dealing with and they need strength and encouragement to get through each day... God please give Britney and her husband a large dose of energy to make it through there days with this little angel.. and peace in their home and marriage due to the stress this situation will cause..

In Jesus name i pray Amen.

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