I thought that when we finally brought Colton home, that everything would be fine. Oh how I was wrong, completely wrong. Besides the doctors the ridiculous amount of doctors visits, many are in little rock over 200 miles away, I am so scared that something may happen. When he was in ACH I hated that he was so far away but I was happy knowing that there was a team of doctors there to help him if the need arose. And now that we have to make car payments it’s harder than ever to make it through the week.
The worst part is not knowing how Colton will be years down the road. Will he ever get out of diapers? Will he be able to ride a bike? Run? Heck just even walk? Will he be able to talk? Or give someone his first kiss? Job? Marriage? Kids? I know, I know…he’s only 10 weeks old but these thoughts are starting to kill me. I feel like me and Cory will never have alone time, as no one would want to babysit 3 kids, and heck we can’t afford me either…
I know that there’s other parents that have kids with worse disabilities but I just never thought I’d be that parent. I had this dream of what our life would be like. That another 20 years down the line Cory and I could finally relax and maybe start to enjoy being a grandparent or go explore… But maybe now that will never happen…
I know that I’m depressed I can see the signs, but don’t have insurance and my two youngest need their mamas milk. Also I can’t afford to formula feed. So I guess. Will just try and bare it, just try and ignore it even if some days I’d rather just walk away. I just wish that this was all a dream and I could pinch myself awake.
I love my kids so much it hurts, I would do anything for them! I guess I can pray and dream that Colton will be able to live a normal life, right!?
For those that don’t know already, Colton was born with alot of problems…hydrocephalus is one of them. He has had surgery to correct his duodenal atresia and biliary atresia, now the doctors want to shunt him….we will see how this goes on his next neurosurgery appointment. Heck he may surprise us all and not need it? I hope so but I know now not to get my hopes up…
We are finally home! My dream, hopes, and wishes have finally come true. Today was a big day for Colton. Last night I watched all of the required movies and took a CPR class. Colton had to bare through 3 hours in his carseat test. But he passed! This morning Cory and I, filled his scripts and our gas tank. The longest part was the wait. Oh we were ready to leave this morning after we woke up. Oh heck! We were ready a couple months ago. Well finally the wait is over and we are peacefully relaxing in our home sweet home. Colton has many appointments this month (and when I say many, I mean MANY) but its all worth it to have all of my kids under the same roof. Even if he wakes every hour I will sleep more peacefully than I have since April 15 after my membranes prematurely ruptured and went into labor. Thank you all who have kept him in your thoughts and prayers and continue to do so please. He still has a long way to go.
Insomnia has bitten again. I live for the day that I can bring Colton home and finally sleep a true sleep. Oh I know he’ll wake up each and every night. But when I’m sleeping it will be filled with peace knowing my family is whole. Oh I cannot wait for that day!
I’m so glad I can write as it helps me understand my problems and feeling. Well to put it short and sweet’ my husband and I are having difficulties with my mother in law… Needless to say Cory’s brother is a part of this problem. She won’t listen to what were saying so me and Cory have come to a mutual conclusion that its time to move on…
again. I know that we an make it on our own as we’ve down it before no problem. We (cory and I) just thought shed changed and that it would all be different…NOT! Oh how she drives me nuts! So lately I become to going to the park, the buss stop where m mom works, or random friends with kids. Just so I can stay sane. And not let the kids see her be so disrespectful. I want them to love their grandmother…and…I can truly say that it’s very easy to be respectful towards her…doesn’t mean I
Well, we have been driving around looking for a new house, a nicer house. And it’s been difficult so far but we have a lot of hope. I am so glad Cory and I have such a strong and wonderful marriage. It makes struggles like ours so much easier to bear.
When Colton comes home, he’s going to have home health care.
Height, weight, head circumference, etc
The nurse will come twice a week the first two weeks, then once a week for the next four weeks, and so on and so on. Physical therapy may be in his future…and the dreaded little rock trips. At least most of his appointments will be in Lowell.
I just hope he comes home really quick. I miss him so much! My heart hurts and when I think of how long it’s been since I’ve held him….I sometimes just want to cry to myself. I hold it in all day, so that my children don’t see tears all day everyday. Like now, as everyone sleeps, I feel my eyes moisten by just thinking of him. Scrolling through his pictures and remember that particular NICU/hospital smell. Oh that dreaded smell! An almost sick smell. The day that I can bring him home will be the most happiest day of my life (aside from our marriage, and each of my kids birth.)
Writing definitely has helped, I am starting to get worn out. I have appointments for the kids tomorrow and I don’t want to drink to much coffee!
Trying to relax and take a break from the whirlwind of emotions I’ve been experiencing for the past couple days. My grandmother, bless her soul, financed a car for me and Cory. Its a 2003 Mazda Tribute. Oh how wonderful it was to finally go back down and see Colton. He’s been doing just wonderful without me, which makes me feel a bit depressed because I’m missing all of his good days.
That’s the part that kills me is that we lost our room because we had no vehicle to go down there. So now I’m stuck only seeing him on the weekends…and that’s the part that hurts the most.
When we visited him last weekend he had developed an infection on his liver, but they were very prompt in treating him. He has 2 more days of steroids and three more days of antibiotics. And his doctor even told the nurse that he may be able to come home in a couple weeks! Amazing isn’t it!?
I just wish we could afford to stay in a hotel room. But alas these trips are sending us into the poor house. Our car broke down and now were making payments on a newer car so that’s that much more thats going out of the house. I just wish there was some way I could stay down there….
Well my other two children light up my days. Cheyenne is potty training herself. I know right?! Hunter is starting his home schooling where he’s writing the alphabet and his numbers. And with appointments and cleaning the house, I’m staying busy. I just hate the moments of peace where I start thinking. And now that our phone is dead (I can barely make calls from my iPad and its going to be another 3 or so days before our new phone is in the mail) I have to go to my mothers to call and check on Colton.
Hopefully soon, very soon, Colton can come home and we can all be happy.
Well…the weekend started out great and by great it was wonderful to be with Colton and to finally see Cory hold his youngest son. He’s growing up so much and I hate it because I feel like I am missing so much! I just wish I could be with him all day and every day and that will be soon, but just not soon enough for me. My dad even came all the way from Tulsa, OK. It was amazing to finally look at my baby and see him as a newborn. Today (6-10-13) he is 9 days corrected age although his chronological age is 1 months 23 days. He’s filling out as well. I washed him and dressed him in a cute blue button up (I found out the nurses don’t care for zip ups because of all the cords.) But it was so amazing to be with him and hold him and love on him. I cannot wait to wear him so over the place, have a feeling that his dad and I are constantly going to be fighting over who gets to hold him. Haha. I’m trying to find humor in things other wise I just start wheeling so overwhelmed.
On the way back home yesterday our car broke down. It barely made it to the driveway. I guess it’s something to do with the head gasket and the fact that water is in the oil… Yah just what we needed…and then when we finally get home I find out my oldest son was bit by a tick and it got infected. So I start to clean it with tea tree oil, and then bandage it up with minced garlic. Last night it seemed to start looking better, but that changed when I woke up. It was bigger than a grape (a big puss ball), I am pretty sure it was the garlic that pulled out the infection. I took him to the emergency room just to be sure Nd they thanked me for marking where e previous sweeping had been so they could see how much it’d grown. They prescribed antibiotics and topical antibiotics. I also put some gentian violet on it and its finally looking better.
wonderful thing happened last night as well…I started a load of laundry in the dryer and it….broke. Yah just lovely right? Instead of pouring bad luck I’m having a mountain crashing down. So now I have a broke car, a broke dryer, and this morning I had to take a trip to the emergency room. And to top it all off I have no way to go down and see my lovely youngest son. Thank goodness he’s doing great because I don’t think I could handle much more.
(I wrote this a few days ago and just now am able to post it.)
As we are traveling down to Little Rock I’m experiencing such a multitude of emotions. Exhilaration, sadness, guilt, happiness, and much more. My mother-in-law is watching the kids tonight so Cory and I can visit Colton alone. And I just hate leaving any of my kids anywhere. I hate that I have to leave my youngest son in another city just so I can clean the house and take care of my home.
Well, today is looking a lot better as Colton is finally on the mend! Today he is almost 7 pounds 11 ounces, they took the PICC line off (HE IS IV FREE!!!!!, the cannula is off now as well, and he’s off the warmer! Woohoo! Hopefully this surgery works for good and he won’t need to go in for liver surgery.
I also have to express how much we’re filled with gratitude for all of the donations put in Colton’s jar at Marvin’s an the Buss Stop. This has helped us be able to go back and forth and even towards groceries.
Cory and I are minutes away (he’s driving, of course)I have 27 bottles of my milk in the trunk, and as soon as we get to ACH I immediately have to run to the lactation room to keep it all fresh. And then we get to give Colton’s his bath, I am so exhilarated to see my baby boy! I am jumping for joy that I get to hold that handsome little fighter.