The doctor just recommended a feeding tube for your child and you are simultaneously terrified, grateful, devastated and hopeful for the future.
I know this because this is exactly how I felt the day our neonatologist came in and talked to me about placing a G-button in my 20 day old babies belly. Up until that point Mel had an OG or orogastric tube through her mouth and I had been hopeful that she would be able to eat orally before we left the NICU. The thought of a G-button was so scary, would I know how to take care of it? How would I feed her in the real world? How would I handle the questions and quizzical looks from strangers? All these questions swam around in my mind even through 2 classes on care of the button and stoma (skin around the button) and all our nurses telling me it would all be okay.
I know this because this is exactly how I felt the day our neonatologist came in and talked to me about placing a G-button in my 20 day old babies belly. Up until that point Mel had an OG or orogastric tube through her mouth and I had been hopeful that she would be able to eat orally before we left the NICU. The thought of a G-button was so scary, would I know how to take care of it? How would I feed her in the real world? How would I handle the questions and quizzical looks from strangers? All these questions swam around in my mind even through 2 classes on care of the button and stoma (skin around the button) and all our nurses telling me it would all be okay.
Guess what ladies and gentleman, it was all okay. Yea at the beginning I was so nervous and I felt like there were a million steps and I just knew I would forget one and the entire world would burst in flames. But even as I did make mistakes and I did forget steps, all was okay. Here are my recommendations for what to do if this becomes or has become a reality for you!
1. TAKE A DEEP BREATH! Yes this is number one because you are about to learn alot. the nurses, doctors and other staff are about to show you a bunch of stuff you have never seen before. Your are going to be overwhelmed but it is okay!
2. Write EVERYTHING down. Even if someone or even you thinks it is stupid. I can't tell you the number of times I have referred back to the spiral I had with me in the NICU!
3. Ask all the questions. If you don't fully understand something ask again, if the person trying to explain it still isn't making sense ask someone else to explain it to you! The day we left the NICU the nurse was trying to explain to me how to set Mel's food pump. And it was 120% going straight over my head! I asked her to write it all down and I still have that piece of paper!!
4. Don't bottle up your emotions. I say this because I have met a lot of people in the hospital and we spent a fair amount of impatient time during Mel's first year. If you need to cry, do it. If you need to talk to someone outside of your situation, let your child's nurse or doctor know that you need to speak to a counselor or a chaplain. During our NICU stay a counselor kept coming in to talk to me and I was too prideful to admit I needed "therapy". When Mel was admitted into the PICU that same counselor was the first person I asked my nurse to find for me! It helped so much to be able to vent and just talk to someone who was looking in from the outside.
5. This will be your new normal. It all feels so new and overwhelming at first but trust me. You will wake up in the middle of the night and give meds or change the food bag half asleep and you will do it perfectly 98% of the time. The other 2% of the time you will forget to turn the pump back on or you will not reconnect a tube and you will "feed the bed". It will happen. You will cry and you will feel like the worst mother ever. But no one is perfect and your child will love you even if they sleep in a puddle of formula for a few hours!
So mama, be easy on yourself. Love on your baby and thank God that you were blessed with another day. Ohh and have a glass of wine while your at it!
Love until another day,
Shelbi
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