Friday, June 19, 2009

Begging to Bring Joey Home

This is also a flashback Friday but I did not want to use that phrase again in the title. Here is the last entry on Joey's initial (yes... there was a subsequent one) hospital stay. I don't mean to dwell on this but I think it is important for others to know what the process of getting your baby sprung from the NICU can be like, and the importance of being your baby's advocate to hasten the process.

After the tubes came out of Joey's stomach and he began feeding from a bottle, we were moved to Room E of the NICU. Most of the babies in that room were there for problems with feeding and to gain weight before going home. While Joey had lost some weight from the intestinal blockage and surgery, and was down to about 6.5 pounds from his birthweight of 7.5 pounds, he was still one of the larger babies in the NICU. I believed that feeding, if that was indeed the only reason he was still in the hospital, was something that I could work on with him at home. After all, it was not like he was not eating at all, he was just slow at it and would get sleepy. Because of this the NICU nurses kept threatening to place another NG tube in him to finish his feedings that way. Most of the babies in Room E had one. But I was horrified at the thought of them putting another tube in my baby. I saw it as regressing and told them that I would not authorize it. If he needed to learn how to eat I did not see how feeding him through a tube was going to accomplish anything. One nurse even went as far as getting an order from the doctor to do it. The doctor later told me that she reluctantly signed the order but she did not think it was necessary just yet. But I refused to allow it unless it was absolutely medically necessary. And it never became medically necessary so we were able to avoid it.

As a result, my husband Tony and I tried to be the ones to feed him whenever possible. Granted it did take a lot of time and energy and I know the nurses did not have the time to dedicate to just feeding Joey....but I was determined not to let them put another tube in my baby. So my husband and I fed him. I would hold the bottle while my husband tickled and rubbed his feet, held a cold washcloth to his cheeks or arms, all while we both talked to him. Looking back it was probably quite the sight. But it worked. And he slowly began to eat more and more.

Now I wanted to take him home. But no one would tell me when we could do that. When he got back up, past his birthweight, I began telling the neonatologist and the nurses that if the only reason we were there was for feedings, I wanted to take him home by the end of the week even if it meant signing him out against medical advice. At first my demands were met with statements like "it's nice to have goals." So I became more persistent... I told everyone who asked "how we were doing" that I wanted to take him home and if feeding was the only reason we were still in the hospital... I could feed him at home. On February 24, 2009 I asked them to please do whatever they needed to do to clear him to go home.

Finally, on February 25, 2009, I was sitting there holding him when the Neonatologist came in. With tears in my eyes I said "I'm begging you...please let me take my baby home..." I was absolutely exhausted from running back and forth between home and the hospital, and pumping every four hours throughout the night, and ready to let the tears start flowing. And she said "ok... just please don't cry." She had been home the last few days with her own sick child and said that she could not take anymore crying. She then removed his PICC line and said we could take him home so long as I agreed to take him to the pediatrician for follow-up in two days.

I was absolutely thrilled. Here are some pics.

Joey looking more and more alert on February 23 and ( in my mind) ready to go home.

Stopping by to feed Joey before heading to his baby shower (remember he was born five weeks early). We were bummed that he could not join us.

Joey was obviously happy about the PICC line being removed...he's almost smiling.

Ready to go home!!!

Joey looking so tiny in his carseat.
And last but not least my favorite...yeah that's right baby... hold on for dear life... we are going home!!

Your mom and dad my not have a clue what they are is going to be an adventure for all... but one thing is for sure... YOU ARE LOVED!


  1. Ok, first of are my hero. What an amazing advocate you are. We have to tell my mom this story. She is one of the only NICU nurses that pushes back on the doctors and nurse practictioners that push tubes to feed babies. She takes her time with her babies to feed them the good old fashioned way even if it makes her job harder or longer. She would have been soooooo impressed with you and your husband for your perseverence.
    Second, you are soooo photogenic Cori :)!!! and so is Joey :)
    What a great story to share and I'm sure this will be sooo helpful to those moms who may be expecting a baby and need to know how to advocate for their children :)

  2. Thank you Jen. It was hard to speak up to them. They know everything about babies and who was I...I knew nothing. But after watching Joey cough and choke on the tube when it had to be there to drain his stomach after the surgery, I could not bear the thought of them putting in another one. I was frankly surprised at how many babies had the tubes in, even though they were not always being used. It seemed like the nurses where we were staying were in a hurry and wanting to keep their schedule. Good for your mom, insisting on feeding them the good old fashioned way, I wish she had been our nurse!
    And thanks for the compliment on the photos. I do not always feel so photogenic but thought..oh well ;)

  3. Oh Cori, how this brings back memories. After 16 weeks I was about ready to steal my own baby. And I swore I would personally wring the neck of anyone who stuck another ng tube up her nose! Isn't it an odd feeling to be reduced to begging to have your baby given back to you? I hated it.

  4. You're profile pic on here is beautiful! I swear once this move dies down (we're on week 4) I'll whip up Joey's blanket I'd promised... already bought the material :)

    You're a wonderful person and a wonderful mom... prepare to be unappreciated. LOL! But it's all worth it hun.

    Miss you.

  5. Good thing you've had lots of practice standing up to authority and not taking no for an answer! =P (PS - He's so cute!)