@MBS2016 we are doing okay. DS is still in the hospital for insufficient oral feeds (day 25!!). I'm so over it but we finally have a plan to get him home- didn't happen until now because they like to wait until baby's due date (Which was 12/31). We will be moving back to then original hospital location and they will do a "swallow study" to make sure that when he eats he is not aspirating liquid into his lungs and he will also be seen by a geneticist to consider any underlying issues (he has already had one genetic testing that came back normal). OT has ruled out most physical issues. I personally think that his nasogastric tube bothers him a lot, along with his original experiences immediately after birth- but of course they swear that couldn't be the case (my Google searches have told me otherwise- including legit research). After he has those tests, it's likely he will get a gastrointestinal tube placed (Which sounds scary but it's pretty minor) and then they will take out the other tube and he can COME HOME and I can find my own therapist to work with him and get it figured out.
We are very frustrated and exhausted. I worry about him constantly because he doesn't fuss a lot so I don't think he gets much attention from the nurses. We try to be there as much as possible and to have other people (grandparents) there to be with him, but with another baby and toddler at home, there is never enough time.
DD2 is doing great, on the other hand, eats tons and is now used to getting hauled around everywhere- poor girl.
@ea301 you can absolutely use your facebook account. If you know any other dads looking for a forum please invite them to send me a message on facebook and we will add them. Hopefully we can find enough dads to make this work!
Me: 35 Husband: 40 TTC #2: Jan 2019 DS: 2.5 yo EDD: 12/2/16 DOB: 10/22/16 (Previously MBS2016 Dec 2016 board
@MBS2016 we are doing okay. DS is still in the hospital for insufficient oral feeds (day 25!!). I'm so over it but we finally have a plan to get him home- didn't happen until now because they like to wait until baby's due date (Which was 12/31). We will be moving back to then original hospital location and they will do a "swallow study" to make sure that when he eats he is not aspirating liquid into his lungs and he will also be seen by a geneticist to consider any underlying issues (he has already had one genetic testing that came back normal). OT has ruled out most physical issues. I personally think that his nasogastric tube bothers him a lot, along with his original experiences immediately after birth- but of course they swear that couldn't be the case (my Google searches have told me otherwise- including legit research). After he has those tests, it's likely he will get a gastrointestinal tube placed (Which sounds scary but it's pretty minor) and then they will take out the other tube and he can COME HOME and I can find my own therapist to work with him and get it figured out.
We are very frustrated and exhausted. I worry about him constantly because he doesn't fuss a lot so I don't think he gets much attention from the nurses. We try to be there as much as possible and to have other people (grandparents) there to be with him, but with another baby and toddler at home, there is never enough time.
DD2 is doing great, on the other hand, eats tons and is now used to getting hauled around everywhere- poor girl.
I don't want to get all involved in your business and suppose medical solutions BUT my son was in the NICU for 62 days, mostly for feeding issues, and it wasn't until he ripped out his own tube that he took his bottles more. He had ripped it out before but wasn't feeding much then so we didn't notice. But once that sucker was gone I begged them to let it stay out and he came home within the week after, eating 2 ounces per bottle. I fully believe it hindered his progress. To put it back in is no fun, but it changed the game for him and might be worth exploring for you.
Guys, just thought I'd toss the huge news in here: Ambrose's MRI came back with zero abnormalities. The results still have to be interpreted by the neurologist (who was the one who gave us really scary news about him possibly being brain dead based on his abnormal EEG patterns, and was not hopeful about the MRI), in conjunction with his EEG and how he's been doing, but we are rejoicing for now. This is the best possible news we could have received. My buddy is a fighter!
Me: 31 | DH: 31
Together since 2003 | Married 2010 TTC #1 January 2016 BFP April 18 2016 | EDD December 29, 2016 Welcome baby A! January 9, 2017
TTC#2 March 2018 BFP March 30, 2018 | EDD December 12, 2018
@PensiveCrayon I literally had tears in my eyes when I read your update on FB. I am so beyond happy to hear the initial report on the MRI. Continuing to send my strength and love to all of you. Can't wait to read that the results are 'normal', officially!
@PensiveCrayon that is amazing news, I am so happy for you that my eyes are leaking. Happy hugs!!! Way to go Ambrose! He is the little engine that could
Re: Premature Birth/NICU Love Club
We are very frustrated and exhausted. I worry about him constantly because he doesn't fuss a lot so I don't think he gets much attention from the nurses. We try to be there as much as possible and to have other people (grandparents) there to be with him, but with another baby and toddler at home, there is never enough time.
DD2 is doing great, on the other hand, eats tons and is now used to getting hauled around everywhere- poor girl.
TTC #2: Jan 2019
DS: 2.5 yo
EDD: 12/2/16 DOB: 10/22/16
(Previously MBS2016 Dec 2016 board
Just throwing that out there.
TTC #1 January 2016
BFP April 18 2016 | EDD December 29, 2016
Welcome baby A! January 9, 2017
TTC#2 March 2018
BFP March 30, 2018 | EDD December 12, 2018
Me: 39 DH: 36
Married: Sept 2018
DS: December 2016
#2 EDD Feb 2020