A week from today.

We're only a week away from Ethan's surgery and my emotions are consuming me. I am keeping myself busy with work and things around the house,yet it still keeps running through my mind.
I am terrified of losing my son.But I try to remind myself of all the people I know that have made it through spinal surgery just fine.It is still just so scary knowing what my son is about to go through.

He had his 4 month check up today.Things went well,he is 19.1lbs 25 3/4in and his head is a "normal" 26cm! The dr was fussing at me about his weight telling me how he is off the charts and is the weight of a 12 month old ect. ect. But when I told her he only eats 6oz every 3-4hrs she was at a loss of what to do. She recommended we start solids so we can limit calorie intake but I insisted we wait until after recovery from surgery and she said she totally agreed that she forgot that was coming up. He also got 4 shots today and the poor baby was very upset. I had to giggle a little when he was crying, got quiet,looked at the nurse and screamed, then he got quite again and puckered out his lip.

I look at Ethan and I am in awe. He is so little yet so strong. He is oblivious to all the trials in this world and is just happy to be alive! He enjoys the littlest simplest of things. I love the moments we share together. Holding him in my arms and him looking up at me smiling.It makes my heart melt! I love him more and more every second.Being a mother is a different kind of love, a love that runs deeper than anything I have ever felt before.Yet it is the most wonderful feeling,and I am so grateful I have been given the opportunity to feel it and share it with him!

Just a few things on my mind.

Not too much is new recently. Ethan has been doing a bit better at night time,he is starting to sleep from 8ish to 2 then 3-530 which is truly a blessing compared to what I was getting of sleep. He hasn't really reached anymore milestones though he is cooing "talking" A LOT more! The boy wont hush lol but its so cute! He is also starting to try to sit up (I think) he will be laying on his back and start to pull up and gets about 1/4 the way then falls back..he will get it in time! I think it's still pretty early for him to be even attempting it!

I am really dreading March 1st. I am terrified of it. There's so many things up in the air for him and it is always so hard not knowing. I know God is in control and his will will be done,but it is a true test of faith. My biggest fear is Ethan dieing. I keep being told that that is not a possibility, but it always is when you have a major surgery,no matter how people try to tell you it isn't. I couldn't imagine my life without my son,he is my world. In the meantime I am just trying to make that worry a distant thought. I am also concerned that this surgery is going to make his feeling/movement/bowel/bladder worse. I don't really know anyone who's little one didn't have surgery right after birth so I'm not sure what the differance may be. Yet another one of those wait and sees.Another concern of mine..that I haven't shared w/ anyone yet bc honestly I'm not sure if I'm right or not is Ethan's bowel movements..I'm not sure if it is bc of the SB or if it is bc of all the rice cereal added to his milk for reflux but he wont go on his own unless I give him juice.He didn't have a prob with it at all until the rice cereal was added then it progressively got worse so I believe that is what is going on but I'm not really sure.

Another thing that has been bothering me recently is how some people react about Ethan's SB and SB in general. I don't want my son to be treated any differently bc he has a "disability" but I also do want it to be recognized, it is NOTHING to be ashamed of. I have been having numerous comments like "good thing nothings wrong with him hunh" or "oh hes fine,I don't know why you take him to so many appts" and I could go on and on with the list but why bother! Another thing that REALLY got to me is a aquantance of mine. Her baby has a sacral demple and they were doing a ultrasound to see what was going on. Her initial reaction was big concerns her child wont walk or will have to have surgery and things of that nature (which I do understand all to well) but it turned out it is just a demple and nothing more! Well others were saying "Thank God" and "What a relief" I know it shouldn't bother me bc if I were in her shoes I know I would feel the same.But being in my shoes I cant help but think...it's not that bad. I dont know if what I am saying is making sense or not, honestly reading it it doesn't to me,but Im not really sure how to express how I feel.Overall I guess I want people to recgonize SB is not a terrible thing and it is a disability but it doesn't define you. I want people to be amazed at what Ethan and others with SB accomplish vs. pretending it is not a big deal. I know we have a long long road ahead of us as we are only 14 weeks into Ethan's joyful life, and we have many many accomplishments to come. I can't wait to see what the future holds for Ethan and our family and I want others to be able to share in that with us too!

Awsome giveaway!

If you go down to the bottom right of my pg. you will see a link to the The Journey...it is a awsome sight w/ lots of SB info and there is a give away going on right now!! Spinabifidakids.blogspot.com is the exact link!

The holidays and recent appts.

What's this?Ethan's first time being spoon fed!
lMommy and Ethan



Sorry I haven't posted in awhile. I've had my hands a bit full lately!
Christmas was wonderful! Ethan got so much stuff I couldn't believe it! Who would think people would go all out for a newborn! We ended up going to Greg's Maw Maw Campbell's on Christmas eve,then his Maw Maw Whitaker's, then Dad, Lisa and Lee Lee came over. Christmas morning Greg,Ethan, and myself had our own little event then that afternoon we went to Greg's parents. Needless to say I will NOT be doing all that again. It's so hard to drag a baby,diaper bag,and presents all over town...they can come to us for now on!

New Years was nice, Greg,me,Ethan,and our friends Bryan and Trey hung out at my house and my sister and her friend Lauren came over to eat with us! We took a few pics so Ill add those here too!

Jan. 4th Ethan had his MRI and everything went fine,though I was a nervous wreck the entire day.I got the results on Jan 7th and they weren't exactly what I was expecting. I honestly thought that they were going to say there was nothing in the sac except for fluid. But instead they told me that there are nerves in the sac as well intangled into each other, as well as the membrane that keeps the spinal fluid in the spinal column is ruptured. The surgery is going to be March 1st. Dr. Heneger doesn't think Ethan will lose bowel/bladder nor will he lose leg/feet feeling/movement.BUT it is a risk.He also told us that Ethan will more than likely need repeat surgeries throughout the span of his life to keep correcting the nerves bc they will continue to grow back and get caught in the scare tissue. If the nerves go uncorrected then Ethan will ultimately lose the feeling/movement/bowel/bladder anyway.So the best option is to try to correct it.I was also told at this appt that Ethan has a cyst on his brain.I was told not to worry about it that they will just keep a eye on it and that was it. I am concerned about it but I am not going to research it bc all it will do is lead to more worries.

I almost forgot to add that I have been spoon feeding Ethan 1x a day and he loves it! And he makes some of the funniest faces sometimes! But overall he loves it!

Anyways, that is the past few weeks in a nut shell! I promise I will start updating more often!!

merry christmas!

Ethan is rolling over!

Im about a week late on this but Ethan started rolling over last sunday! He loves it! Everytime he rolls he smiles..its just too darn cute! He is starting to sleep better through the night,but were still not a full night sleeper yet.

Thursday we went to the eye dr to make sure the cpap and oxygen didnt harm his eyes,and after a very tramatic experience we found out it didnt! We will go back when Ethan turns 6 months just to double check.

Other than that I dont really have anything to report.I am extremely tired and I start back to work this coming Fri. :( Oh Ethan has physical Therapy on mon,so Ill update then!

Reflux

Thursday Ethan's ped called me to see how he was doing with his reflux medications. I told them he was still throwing up way too much and as of that morning he could not hold down a bottle at all. Of course they had me bring him in right away. When we get there they listened to his tummy and chest for a good while then they measured his head and looked at me and said "you need to go to the hospital right now" they werent sure what was going on with him. The Dr at this point said it was either going to be because of ACM II or a muscle in his tummy. She called our neuro to see if he thought it was ACM II and he said he didnt think that the head growth was too alarming and he didnt think the vomiting was being caused by it either. (his head circ. grew 1cm in 4days) The neuro said we would just push his appt for the mri forward so we can get a better idea of things sooner (I have yet to hear when it is going to be now,it was going to be 01-04) So we were off to the hospital. I was terrified bc the dr (ped) told me that if it was the muscle in his tummy or it was ACM II they would do surgery right away. I got ahold of Greg and him and my mother in law met me and Ethan at the hospital. I must add this little part..though it is not as important as the story itself..it goes to show why I HATE Gaston Memorial hospital and why I drive 1 hr 15min to Presbyterian! The dr had called Gaston and set up x-rays,ultrasounds,and for this tube thing to be placed down his throat. I was told "go in the birthing center and the receptionist will tell you where to go if you just tell them Ethans there for radiology" Ok easy enough right...WRONG! I walk in and immediatly get screamed at by this old man who "No one under 18,get him out of here" I screamed back "hes the patient" like seriously you couldnt have politetly asked if hes the patient? So I just walked past the guy and kept going! I get to reception, tell them he has a appt in radiology. They send me to the 3rd floor (btw the birth place is seperate from the actual hospital though they are conected by a breezeway) so I got to the 3rd floor and ask the guy at the desk if he can point me to radiology.He sasys "you cant have that baby here, no one under 18 is allowed" I respond "I know sir,hes the patient" the guy then tells me to go to the main building and go to the 2nd floor and down the hall on the left" I thank him and go where he told me.Now Im in the er. AARGGHH! So I ask someone in there how I get to radiology and they say go to the 1st floor and down the hall on the left. So thats where I go next (let me make sure you know here the dr is telling me how urgent this is and Im freaking out) I finally get in radiology and they scream at me because Ethan wasnt admited at the reception desk in the birth place. I explain exactly what happened. And the lady sighed and said hold on and she made a phone call. She tells the person on the phone "this lady claims she wasnt told she and to be admited what do I make her do" She then puts the phone down and says to be "go get him admited" I got pissed and said "what the hell is wrong with everyone in this damn hospital.My dr said its urgent for him to get this done and no one gives a shit your all just throwing me around" she looks at me and says "go to admitting" AAARRRGGGHHH!!!!!! So i go to admitting, I was there 45min no lie! Then I finally get back to radiology and they took us straight back bc "its urgent" ASSES!!! why was it not so urgent till now? So everything was done..I had to hold Ethan down while they did it which was horrible. Then we were sent to the waiting area for the results. Found out it is just severe reflux! They had called my ped to let her know and she wanted to talk to me on the phone, she told me to give him the same amount of meds for the reflux and to add 1 1/4tsp of rice cereal to every 1oz of formula.

Ethans vomiting has finally gotten better, hes still doing it some but not nearly as bad. Yesterday turned into a ruff day with him, he refused to sleep more than 15min at a time. And it only got worse with him not sleeping, not taking a bottle,crying, and screaming as the day went on. Last night Greg watched him for awhile so I could lay down, and Ethan screamed like he was being killed for 3hrs straight. There was no break in it, no matter what Greg did it didnt work.I finally gave up on trying to get some sleep and came back to the living room to help Greg. Then around 930ish Greg said "lets try a regular bottle without rice" So we did, and he ate the whole thing in 3mins. I went and inspected the other bottles we had been trying to give him..its very hard for the milk to come out bc of how thick it is. I think that was the whole prob all day...now I feel like crap bc I know how hungry he had to have been to have gotten that upset for that long.

I am going today to find cereal nipples..I know they exist somewhere bc I remember seeing them. I am already using high flow 6month nipples but they still arent good enough obviously. I also am having my mother and father in law watch Ethan for awhile today so I can sleep! I havent gotten actual sleep in a long time..I always get 1-3hrs here and there but I am give out physically and mentally. I am to the point I dont want to stand up bc I feel weak and my body aches.

Well gotta go tend to a screaming baby! Ill update again when i have a chance/