Holy connoli in 8 days we will have our precious baby Jonah!
I got my first steroid shot today. Right in the rear! the poke didnt hurt but it was very itchy lol… I guess thats the least of my worries. Im glad that they are able to do the steroids to get his lungs developed! Im so excited to see him and hold him, Im super nervous for the c section and his surgery though.. has anyone else ever watched a csection? ITS GROSS!!! after they take the baby out, they like take your uterus out and set it on your stomach to inspect it.. and then the just shove it back in, and it doesnt even look like they are being super gentle with it either… I asked my Doctor if they really do that and she was like ” oh yeah, they just need to inspect it and clean it up a bit and then they’ll put it right back in ya…” she said this so casually… I could never be a surgeon… Anyhoo I am having the csection @ 8 am on the 17th. Jonah will be having his surgery @ 2pm. This only gives me a few precious hours before they take him away from me .
Please be praying that everything goes well and that Jonah will be perfectly healthy in all other aspects and that he has a speedy recovery!!
SO our last appointment went, well not so well. I have to have my c section August 17th. A whole month early. His head is measuring 40 weeks and i am only 33. Im scared and nervous. I dont really want to say anymore right now. Ill write more later
So today we have an appointment @ 2:15… We find out today when we have to have the csection…. Im excited and also nervous. Please be praying that his fluid levels have either stayed the same or went down. the longer he can cook in there the better.Last night it was hard to sleep, just anxious for today. The night before I couldnt sleep because the AC went out… The next time Im pregnant Im going to make sure Im the most pregnant during the winter, because that was seriously miserable. anyhoo, like I said please be praying for his fluid levels but also just that I get to keep him. Even if he does have some disabilities or a shunt I dont care I Just want to be able to bring him home and have him in my life. SO please be praying for his overall health. Thank you so much for everyones support! we are truly grateful for it, Jonah doesnt know this but he’s already a miracle. He has already made mine and so many others prayer lives better. I dont know about any of you but I definitely wasnt praying as much as I needed to before this. Jonah has helped me reconnect with God. Ok well I have to get going to work. Wish I could just sleep again. UGH I’m so exhausted.
Well Friday is here and my regular appointment is this afternoon and my baby shower is tomorrow! I get really excited about the shower until I start getting in my head wondering if I’m going to have to give it all back…. That part terrifies me.. for about the past day that’s all I have been thinking about.I try not to.
Each morning my prayer has consisted of “please heal my son Lord and please let me keep him”. I read a blog of someone whose daughter had hydro and she continual prayed that her daughter would cry really hard when she had her. Lately that has been in my prayers too… I just want to hear that sweet scream. I cant wait to see him and hold him, and tell him I love him.
Yesterday Patrick asked me what I thought my first words would be when I hold him. I told him I would probably say I love you and then awwwee his head is so big. LOL I really need to not focus on the size of his head and just pray that we will be able to keep him. I am glad though that I can hold him and be with him for a whole day or two before he has surgery. we are thinking about taking him across the street to Saint Jo’s after I’m all healed up. I hear that that’s the best Nicu in Colorado.
I would really like to be able to go to Boston and have everything done there! they are the #1 tied with John Hopkins for pediatric Neurosurgery. I just want to give my baby the best chance possible. Anyhoo I have to get to work.
Hey everyone, Thank you for the continual prayers! we need them so much. yesterday we met with the pediatric neurosurgeon. My doctor warned me before we went to see her that she did not have the best bed side manners, well I thought she did… I actually liked her the best. She was very matter of fact and informative about what was going on( she also said she liked us because we did research and knew what we were talking about)The doctor said most people go in there not knowing practically anything about the situation! I was pretty shocked! I mean I feel so useless the only thing I can do is get my self informed on everything possible so that I’m ready for the outcome.
My specialist OB said that she THINKS it’s most likely aqueductal stenosis ( not 100% though)… Which is actually the best form of hydrocephalus because it rarely damages the brain!! also with aqueductal stenosis later on in life they can do an ETV which would ultimately mean he can live a shunt free life.( ETV is endoscopic third ventriculostomy… try saying that 5 times fast!) an ETV is where they basically drill a hole where the obstruction is causing the fluid to flow on its own where it should.( you have to be a perfect candidate for that though )
anyhoo the rest of the appointment went well she commended me for refusing to do the mri! she said basically its a waste of time and money because she will not be able to tell anything until the baby is born. Even when people opt to do the Amnio or mri she said its usually because they want to see whats causing it so they can decide if they want to terminate the pregnancy… ( excuse me while I vomit) She said that even then its ridiculously hard to tell what is happening, and that nothing will really change the way she handles things when the baby is born. so everything is a waiting game…. we also wont know if he has developmental issues until he starts reaching milestones… I’m almost happy about that because each time he does reach a milestone like lifting his head or rolling over it will be so special to us!
It’s weird but Praise God for this little boy and his hydrocephalus. If this didn’t happen I wouldn’t know that I could love someone or appreciate them this much. God has a plan and I know he has one for Jonah. People tell me to not lose my faith( mostly men! they don’t know how it feels to have a baby grow in you) , and I WONT! I will be mad at God if I lose my boy but isn’t that understandable? that doesn’t mean i will stay mad because I know in my heart God has a purpose for everything and he will be there with us the whole way!
anyhoo that’s it for today!—–Kelsey
At Tara ( Colorado) today in this fateful hour
I place all Heaven with its power,
And the sun with its brightness,
And the snow with its whiteness,
And fire with all the strength it hath,
And lightning with its rapid wrath,
And the winds with their swiftness along their path,
And the sea with its deepness,
And the rocks with their steepness,
And the earth with its starkness
All these I place,
By God’s almighty help and grace,
Between Jonah and the powers of darkness
The doctors appointment did not go the way we wanted it to. I just dont get it, we have been praying non stop and so have so many other people!! is it my lack of faith that my son is not healed? Im so confused. He is showing good signs that his brain is still functioning and everything else still looks fine but I’m upset because I believed God was going to heal him before this appointment! is it my lack of faith thats keeping this from happening? If so please God take it out on me not on Jonah!! Im trying so hard to trust in God but it is the most exhausting thing trusting in something you cannot see and sometimes cannot feel. I know God is there and he is good but sometimes he answers prayers with a “no” and I cant accept that his answer will be no to healing my son. My heart has never desired something so much more than to heal my son. I have prayed for many things, and never have I been so persistent. I will continue to Pray but that does not mean I’m not angry. Because I am. I am angry that this has to happen to ANYONE and that there is so much evil in this world. And I am angry because God doesn’t always intervene and we wont know why. Please God intervene here!!! I cant do this anymore! I am so exhausted from worrying. I sit at my computer at work and stare and my mind goes blank, I dont know if its a defense mechanism but it’s like I just cant think anymore. My mind is numb and I feel as though my spirit is numb. Help me Lord ! heal my son and hear my cry! I cannot take this, I’m trying to be strong and have faith but after every appointment when the circumstances keep getting worse it’s really hard!!!
The appointment went pretty good. My normal Ob seems a lot more positive than the Specialist lady. She said that from what the specialist told her, Jonah isnt sitting that badly. It’s still a severe situation but not nearly as grave as they made it out to be when they told us. I understand Doctors have to give you all of the possibilities but when I asked the specialist different questions she basically said that theres no hope for Jonah to recover and to be just a “normal” boy, and that the best situations for him would be to have a shunt and slightly mild mental or physical handicaps.
After reading a LOAD of stories online I almost want to go back and slap that doctor. ( I wont becaause that’s not very nice) THERE IS ALWAYS HOPE. I read stories of children that according to the doctors were 100 percent going to die or be severly handicapped, and they came out normal!!! I just had a friend tell me that the problem with today is that we want to know everything right now, and God isnt finished with Jonah yet.
Doctors try to play God and a lot of them think that they know everything. And I’m sorry but just because this particular doctor has not seen something like this heal itself does not mean it can’t happen. GOD is bigger than all of this and she will realize that when Jonah comes out a perfectly healthy baby boy. I can’t wait to prove her wrong! Please keep praying for this miracle!— Kelsey
So we have another appointment today. We have been praying and constantly asking God to heal our precious little boy. Even if he is not completely healed at this appointment we will not lose Faith!! I keep hearing this little voice in my head( kind of like when you have your concience telling you not to do something, like the whole devil on one shoulder angel on the other) that keeps saying ” Don’t be discouraged!” I believe this is God telling me that he has this under control and that no matter what the doctors say his name will be glorified! I als do believe that I will be able to keep my little Jonah. It’s hard to say why but even though I stress and I get frightened about the outcome, I still have this peace that everything is going to be ok. God is way bigger than any of this and I just need to keep remembering that he is in control! Funny thing too, everytime I start to worry or be afraid the song Strength will rise as you wait upon the Lord comes on. God is funny how he works sometimes, but I absolutely LOVE it!
Also THANK YOU, to everyone that is continuing in prayer with us! We are truly blessed to have so many people praying for our little boy!
Its the 4th of July and I hope and pray that we can celebrate with Jonah for many more years to come. He was squirming a lot in my belly last night @ the Erie fireworks! we love him so much.