Preemies
So,
I'm not a happy Momma right now. When Walker had his surgery back on
December 14, surgeon said that she would like him to 2 kilos before he
goes back to reconnect. Now they have found another blockage that needs
to be removed. So until then he can't eat breastmilk. For those that
don't know, he's on TPN to keep him hydrated and for nutrients. But TPN
is horrible on your liver with long term use. That's why we switched to
Omegaven. We aren't see major changes, just slight in his liver count.
The other day I asked what we were waiting for to take him back to
surgery, surgeon said she wanted him to be 2 1/2 kilos. Walker is
currently 1950 grams, which is 1.950 kilos. Today I see the surgeon and
she now says 3 kilos. I had the NEO looked up his growth chart. He is
gaining 500 grams every two weeks. SO, that means another 4 weeks for
him to go to surgery. That means that Walker will not have eaten
breastmilk is a very long time. The longer he goes without, the harder
it will be for his body to adjust. He will need 3 weeks recovery time
before he starts feeds after surgery IF all goes well and he heals
properly. That's 7 weeks!
Options
Ugh...Anyone experience something like this?
So,
I'm not a happy Momma right now. When Walker had his surgery back on
December 14, surgeon said that she would like him to 2 kilos before he
goes back to reconnect. Now they have found another blockage that needs
to be removed. So until then he can't eat breastmilk. For those that
don't know, he's on TPN to keep him hydrated and for nutrients. But TPN
is horrible on your liver with long term use. That's why we switched to
Omegaven. We aren't see major changes, just slight in his liver count.
The other day I asked what we were waiting for to take him back to
surgery, surgeon said she wanted him to be 2 1/2 kilos. Walker is
currently 1950 grams, which is 1.950 kilos. Today I see the surgeon and
she now says 3 kilos. I had the NEO looked up his growth chart. He is
gaining 500 grams every two weeks. SO, that means another 4 weeks for
him to go to surgery. That means that Walker will not have eaten
breastmilk is a very long time. The longer he goes without, the harder
it will be for his body to adjust. He will need 3 weeks recovery time
before he starts feeds after surgery IF all goes well and he heals
properly. That's 7 weeks!
I'm so aggravated and don't see why
she wants to wait. The blockage seems to be closing more and his ostomy
is healing great. Take my baby back. I'm really not happy with the 4
more weeks she is suggesting that he just "grow". She did say she would
take him back if his liver seemed to be getting worse. So for her it's
just a waiting game.
I'm going to page her and have her
address my concerns but I want it done, I'm ready to get the ball
rolling. I'll wait 2 more weeks, 3 at the most but she's either going to
do it or I'm going to "fire" her.
This discussion has been closed.
Re: Ugh...Anyone experience something like this?
I'm glad you were able to get on omegaven! We weren't and I was super disappointed about that. If it makes you feel any better, Scarlette spent three and a half months on TPN. Hate that stuff. The whites of her eyes were green b/c her forget-the-name bili levels from the TPN were so high. She is allergic to breastmilk but made the transition to Elecare wonderfully after coming off the TPN. She's 14 months old now and no damage from the long-term TPN use.
ETA: I meant to add, I think it's normal for them to want babies to reach a certain weight for surgery. I know one baby in our unit had to wait until 5lbs to get her heart surgery.
One of my twins had a bowel perforation and I got stuck in the weight gain limbo as well. He was luckily on breast milk and nippling well but the surgery was the one thing keeping him in the hospital. We were also told 2kg and when he reached 2.5 and we had heard nothing I started to get itchy. I called the surgeon every day and nothing... just waiting. It took a total twist of fate to get anything done. I was talking to my H in Au Bon Pain while I was getting coffee and expressing my frustration and was not aware that one of the neos was behind me. After finishing my coffee in the waiting room guess who was in my baby's room with a surgery date, the surgeon that would never return my calls!
Keep asking and speak to the surgery team yourself if you can, find out when they round and get the interns on your side. I think that sometimes the surgeons don't get the full picture about where the baby is, mine told me that he had no idea how close he was to coming home and saw no reason to continue to wait once he knew. Worst case you might be able to get a solid answer about what weight you need to reach and why, especially if it has changed from what you were initially told.
Good luck, I know this is frustrating, just keep advocating for his care.
I was venting to my primary and clearly taking it out on her which she understood but she told one of the fellows who agrees with me. Hubs is off this weekend and we'll stay at his bedside all day and night until that surgeon comes over. We are getting an answer.
It seems that the NEO team is on our side and feel like it's pretty ridiculous to wait for a certain "number" before he goes back. I actually think that the surgeon and this months set of doctors aren't communicating or getting alone.
I will definitely update and will let you all know.
It's clearly time to take an aggressive approach.
Ugh that is so frustrating. I'm with you and would want the surgery sooner rather than later. We didn't deal with bowel issues but in general our neos made it one of their priorities to get babies off of TPN and on BM. The babies grow a lot better on BM so in that way it would actually benefit him to have the surgery sooner. The other factor that was always a huge concern in our NICU was getting the PICC line out asap because of the infection risk.
FWIW, DD was 2 lb 2 oz at birth, is now 43 weeks corrected and just hit 3 kilos so I definitely don't think you should have to wait that long.
Hopefully you can come to some sort of a compromise and get this resolved soon!
and after 82 days in the NICU, our little girl is home!