Thursday, September 9, 2010

tubes, wires, alarms....

I'm so tired of tubes, wires, pumps, alarms, medications, feeding schedules, medical terms, hand washing, hand sanitizing, puking, physical therapy, occupational therapy, lactation consultants, pumping, syringes, nurses, doctors, ventilators, nasal cannulas, styrofoam cups, hospital grade furniture, leads, monitors, insurance phone calls, hospital phone calls, toilets that sound like jets, limited access to the NICU, the NICU, living out of a suitcase, hospital water, and cafeteria food.

My emotions are all over the place. I want to get the G-tube surgery scheduled. That means we are one step closer to coming home. But at the same time it makes it that much more real that we will be bringing home an extremely medically fragile baby. A baby who will require life long care. It makes it that much more real that our baby is not a "normal" baby and requires special care and attention.

It's scary bringing home a new baby. I remember when we brought both of our kids home for the first time. I was terrified. Was I going to remember to feed them, to change the, what if they cried and didn't stop? Our lives were changed forever. But this time, not only am I nervous about bringing home a 3rd child, but to bring home a medically fragile baby? I'm terrified. What if I forget his medication? What if he starts turning blue? How will it feel to not be hooked up to monitors every second of the day? How am I going to handle 2 small children plus a heart baby? What if something happens and I need to get to the hospital ASAP and have to pack 3 small children up? (that process takes FOREVER....making sure to have diapers, bottles, wipes, extra clothes, shoes, coats, etc....)

I'm ready to be home and be in my normal surroundings with my family and my things. I'm ready to be a family of 5. I'm just not sure if I'm ready to be completely submerged into the world of caring for my baby without medical support 24/7.

I'm tired of this hospital life, but I'm not sure if I'm ready for real life.


Anonymous said...

Jill (this is just my opinion here) but I believe that the majority of Heart Parents suffer from PTSD. You have been thru a tremendous amout of stress since even before Joshua was born. Heck, just having a baby is stressful enough - now through all this other stuff into the mix and you have the potential for a GIANT breakdown. And trust me - not one of us would blame you. I think we have all been there at one time or another. I can honestly say I have. I remember calling my mom crying because I forgot to brush my teeth the 2nd day we were home from the hospital and we were on the way to the Pedi's office. I have said in a joking sense before that the hospital just lets you take this incredibly sick/fragile teeny tiny infant home and NOT ONE MEDICAL PERSON CALLS YOU TO CHECK ON YOU DAILY. It is a tremendous amount to have to work thru - but you can do this. It will all become routine. You will find what works for you. Personally I found that the when people offer to help you - take them up on it. Immediately. Don't feel like you are superwoman and can do it all. (I have a thing about laundry - I like it done a certain way and I am darn picky about it. Let me tell you - by the 2nd week we were home, my MIL was coming over doing it. I shuddered a few times, but got over it quickly!!) Take a deep breath. YOU CAN DO THIS.

Shannon Egan

Lindsay Partridge said...

Above everything else and all other circumstances, you are a Mama...and a fierce and feisty one at that! Your heart will not misguide you. You will be fine. Mamas always manage to make every situation work for our babies. It's our special gift. That, and amazing poop radar. You will be amazing, and you have living proof in Caleb and Hannah of just how amazing you are already! Sending mommy hugs your way!!!

Anonymous said...

Hang in there-you are doing a great job keeping it together! From one heart mom to another-you can let yourself break down. Good grief, you deserve it! You have gone through more stress and anxiety in a few weeks than many will go through in their entire lifetime. Just rest in the Lord and He will give you strength. As Shannon E. said-most heart moms do have PTSD-I know I did. Pray through it and don't be afraid to get help.
As for taking Joshua home, it is pretty scary, but you will do well. Request a visiting nurse-especially since Joshua will have a G-tube. Your insurance may allow you to get block nurse care as well. Look into it-that way, you can get the help that you need.
My heart is filled with love and compassion for you and your family. You are always in my prayers.
Shannan D.
proud mommy to Jamie (PA/IVS_

Michele said...

Hang in there. It will get better...I promise. I've been there and it will get better. I was so ready to come home but terrified of being away from monitors and the safety of the hospital. Then, once we were home, we struggled with feeding and Maxson cried constantly. I finally realized that he was on no pain meds..not even tylenol...and just had open heart surgery. I also came home to two other children..and many days thought "I am crazy...I can't do this...what was I thinking!" You will get into a routine. You will take whatever help is offered. You will adjust to life at home. You will be ok. As a mom, regardless of whether you have a heart baby or a baby with no health issues, you will know what to do...You Are A Mom!! You have done this before and you will be just fine at home. This is scary, it sucks and it isn't fair. But, in the long run, you won't trade this for anything. Joshua is lucky to have you as his mom and lucky to have his family to come home to. You will do great.

Yes...this is a pep talk for me too as we prepare for Maxson's surgery next Tuesday. I am terrified as to what is coming up for us. I cannot wait to meet you, to comfort you, and offer you support next week. Hang in there...I promise you will be great as Joshua's mom when you get home. Many prayers coming your way :)

kirsten michelle said...

Hugs to you, Mama Bear.

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