Saturday, January 10, 2009

Soooooo sick of life like this

yeah so this setback is pretty much the straw that broke the camels back. I am SO tired of living like THIS. I am SO tired of people telling me what I can and can't do with my child. Sure you can take him for a stroller ride but ya gotta stay right here. We're going to put an IV in. No, he can only eat this much by bottle today. Why do you do this everyday? SO TIRED OF IT. His entire 3 months of life has been like visiting someone in prison. I'm tired of being ill ALL THE TIME. If you see me, and you THINK I'm not ill, then my attempt to look normal worked. because I am ill ALL THE TIME. NO I AM NOT OK. WHO asks that to someone who is living like I (we) are living???? 3+ months in the NICU. Yeah. I know. a LOT of people have that happen. But how many are with tiny little preemies who they KNEW would NEVER go home for months? and then how many are with full term babies that should have walked out of there with their mother? Micro preemies born at 24 weeks will go home in 3-4 months on average. Riley will be right there with their time line. That is UNREAL. And he's 3 months old!!! As in a NORMAL 3 month old!! Sure, he may be a bit delayed because of the time in the hospital, and they do adjust his age, but that is STILL 2.5 months old. He is a NORMAL 2.5 to 3 month old baby!! If he's awake, he likes company. Yes it is great I get to visit with him during my workday since I work at the hospital. But how hard do you think it is when he is WIDE awake and I have to just put him down and leave him?? KNOWING he is going to cry cry cry within 2 minutes of my doing so because he's alone again. The nurses are great about getting him out in his stroller to sit in the hall with them or deliver meds to other rooms, etc. but they can only do so much as they have other babies to attend to. I am so tired of having to know every number of every thing about him. 34cm belly girth, pee pee diaper weighs how much? How much ostomy output this time. Heart rate, breathing rate, temperature, inputs/outputs it NEVER ends. I am tired of seeing helicopters or hearing helicopters and gagging. I am tired of eating supper at 11:30 at night because that is when I got home and then lying in bed for two hours with a belly ache... ugh. I am tired of being asked if it is ok to go the pace of a snail when I am holding a hungry baby who WANTS to eat, and of course, where is the urgency for them?? They will go home at 5:00 with the rest of the world, and come back in the next morning and live their normal life. No matter that they are extending our misery longer and longer and longer. If he wants to eat, LET HIM EAT. I am tired of staring at a christmas tree that I didn't want in the first place because no one has the time to take it down.

9 comments:

Anonymous said...

Lindsey - we have never met, but I have literally been following your story since you began posting about Riley. Sounds like you have really reached a breaking point. I just wanted to offer a bit of encouragement. It is absolutely amazing that you have not "broken" before now. Riley and Travis are so lucky to have such a fantastic mother. Just remember that you are NEVER alone...God is always with you, even (and most especially) on those days you just seem to be alone. You are in our family's prayers. I hope venting helped you feel better, and that tomorrow begins a fresh start with a renewed encouragement and hope for healing and recovery. God Bless.

Anonymous said...

Lindsey, I know that I will not have the right words that will comfort you but I will pray that God will touch you with his strength and provide you some comfort through his love. I know your life has been turned upside down and inside out. We are both praying that the days to come will be better. You are a wonderful mother and Jay is a great father. Just remember God never gives a person anything they can't handle. Take care and thinking of you always and hoping Riley has brighter days ahead, Love, Debbie and Gary

Anonymous said...

I realize that you are frustrated, but you still have Riley. Regardless of what the staff is telling you, it is for his benefit so that one day you can bring him home.

BTW, to put this in perspective, there are many preemies who do make it home after three to four months. Some make it to their eternal home on their angel wings though. Praying for your strength in the midst of frustration.

Natalie and Abigail said...

I'm so sorry things are so hard. There definately comes a time when you reach a point where you are just DONE.

I would recommend two things: One - try to find a support group on-line - maybe a NEC group or something to do with the ostomy bag. Searching yahoo groups is a good way to find something.

Two - Maybe you need to take a day off. It's okay to take care of yourself. Take a long nap, go to a movie, read a book. It's hard to do, I know, and the guilt is tremendous, but it may be what you need for a day or even two.

I know it is so hard. It's good to vent. You need to. Sure, others have it worse, but it doesn't make your situation suck any less.

I hope tomorrow is a better day. Hugs to you all.

Johelen

Anonymous said...

Dear Lindsey, I'm praying tomorrow will be a better day for baby Riley and for you. I know the days are hard; keeping you in my thoughts and prayers. God Bless and Keep You. Hugs, Pauline

Brad, Kellie, and Carter Myers said...

Preach on, our NICU sister! I feel like WE wrote that post. Very ready to throw the bottle out the window, get Carter his G Tube and go try to begin a 'normal' life, whatever that is. Sometime in the future, we'll laugh that we got this worked up over our little boys while they play hide and seek. Until then, hang in there!

Anonymous said...

Lindsey,

I am praying for you & Riley..you definately need to vent once in a while. I would suggest you tell the Dr. exactly how you feel. I will continue to pray for you & Riley.
Alice

Melissa said...

Linsey - I'm not sure that we have ever met although we went to the same high school, and I learned about your blog through a mutual friend. I have been following your story for quite some time and you are one of the strongest people I have ever known. It is well within your right to get mad and have a why me day and it seems that it would be emotionally healthy to do so now and then. I pray for you and baby Riley every night. I can't imagine what you must be going through. Please know that you are thought about and prayed for from people you may not even know. Stay strong and dream of the joyous day that you will get to bring that beautiful boy home. May God Bless your family and continue to give you the faith and strength to fight this battle.

Anonymous said...

Sweet Lindsey, There comes a time in almost everyones life, that they just don't think there is light at the end of the tunnel. It is a sad, and helpless feeling, that makes your whole being just ache inside. You have certainly deserved the right to scream, kick, cry, and yes, even say "why me". But through it all, take time to stop for a second, and remember that Riley is still here, and fighting. He can smile at you, and get excited when you enter the room. Many parents are not as fortunate to say that. Take time out and revamp, and let those beautiful boys of yours,give you the strength and courage you need,to put one foot in front of the other, and get through the next
day. Take it one day at a time, or one hour at a time, but just keep moving forward. Riley is soooo worth it, as is Travis, and things will get better again real soon.
God's Blessings to you, and may you feel all the love that is around you.
Hugs to you and Jay, and those precious boys!!!
Dale

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