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RIP Riley (2 Viewers)

Very frustrating 2 days and it has nothing to do with Riley. The way the NICU works, you can't stay in the room during rounds, if they get a new admission, or if they have to do a procedure. Yesterday we get there at 845am for her 9am feeding and they started rounds 15 min later. There schedule to start rounds is any time between 9-11 but it's always different depending on what they have going in. Then when rounds were done we went back in and they had to start a procedure that took 90 minutes. So bottom line we missed two feedings and there 4 hours and saw her for a total of 30 minutes.

Then today we went later at 130. Nurse said she just fed her so wants her to rest so we went to lunch. When we came back we sat with her for 10 min when they kicked us out again because they had to do another procedure so we just left. So the last two days we barely saw her.

As far as Riley she is eating more than last week but still very inconsistent. She usually does only 25ml at most but only if she's awake. If shes sleeping no chance. One nurse fed her almost an entire bottle Thursday night. So the ability is there. It's just she tires out easily. The doctor wants to hold off on putting a gtube in for now but doesnt want to wait too long. He said they are gonna try and put the same nurse with her this weekend who is supposedly good at feeding them and they are gonna try a few different nipples including the haberman mentioned above. Hopefully she does good with that.

 
Very depressed. We went back last night and fed her almost an entire bottle and was very hopeful for today. We go today and she had no interest in the bottle and we stayed for two feedings. My SIL was having a bbq and I just had no interest in being there. Just miss my daughter. She's almost one month old and she belongs at the party with me.

 
Sorry if this has been asked, but have you gotten a second opinion of someone that is more specialized in this field?

 
lakerstan said:
Sorry if this has been asked, but have you gotten a second opinion of someone that is more specialized in this field?
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There is no such thing as an ip specialist. I did talk to another neurologist and he said it sounds like they are treating her to the best of their ability. Right now it's not about treating. She just has to eat and then come home and then there will be many early intervention appointments and neurologist follow ups.

 
Shady, I don't post much but have been following your thread.  I don't have kids of my own but I am a very proud uncle of a niece and nephews and can't imagine the roller coaster you are going through.  Just wanted to send some good vibes your way.  All the best...

 
ChiefD said:
This is very good. Small victories are still victories. Keep your chin up shady. She clearly has your strength. 
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Yeah I used to be worried she did not have the ability but she clearly does. I honestly think the phenobarbital tires her our too much. It's a catch 22. Can't take get off it right now because she could get more seizure. 

 
Gotta keep on keepin' on, shady. As I read your updates, I remember my emotions so vividly. It's so similar, it's scary. My daughter was born in October and we are pretty big with Halloween, so we had a costume for her and everything. She was still in NICU on the 31st, so she never got to wear it, unfortunately. Like I said, we love trick or treating and everything (we have an older son, who is 3 years older than our daughter and was supposed to be a twin but we lost one during pregnancy) and we just didn't feel like doing anything that Halloween. So we stayed in. I guess I'm just trying to say it's ok to feel down sometimes. Just remember, there is a light at the end of this. You have one tough little girl, and you guys are going to get through this. Praying for you bud. 

 
She took an entire bottle.  What an accomplishment for her.  She will get there.  Even if it doesn't seem like she's making progress, she really is.

Time for a small treat for you and your family.  Some premium ice cream, perhaps?  Maybe a tasty bundt cake?  These things are awesome. 

 
shadyridr said:
Very depressed. We went back last night and fed her almost an entire bottle and was very hopeful for today. We go today and she had no interest in the bottle and we stayed for two feedings. My SIL was having a bbq and I just had no interest in being there. Just miss my daughter. She's almost one month old and she belongs at the party with me.
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Isn't a full bottle like 120 ml? That's a huge deal!

 
65ml and yes yesterday we were ecstatic but then today she barely ate 10ml both times we fed her. She was too sleepy

 
Sorry I missed this thread earlier. Keep strong Shady.

I'm an ICU nurse but in a medical ICU with most of my patients 70+ years old. It's a different world in the NICU. If there's anything I can do let me know!

 
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Life is just unfair sometimes.

I'm going back to work tomorrow. Saving a week for when Riley comes home.

Riley still very inconsistent with her feedings. Had feedings of 55ml, 30ml, and 10ml. She's very tired today. 

And to top it all off my MIL is practically in her death bed today.

Dont know how our family gets through both these at the same time.

 
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shadyridr said:
Life is just unfair sometimes.

I'm going back to work tomorrow. Saving a week for when Riley comes home.

Riley still very inconsistent with her feedings. Had feedings of 55ml, 30ml, and 10ml. She's very tired today. 

And to top it all off my MIL is practically in her death bed today.

Dont know how our family gets through both these at the same time.
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On the strength of the family...better days will lie ahead.  

 
holy crap, shady- completely missed ALL of this.

best of luck with the little one, and so sorry to hear about your MIL. hope you get through this rough patch ok- please let me know if there's anything I can do to help. outside of that- lots of happy, healthy thoughts going your way.

 
Doctors still havent given us the option to put the tube in. They are trying to hold off but quite honestly I think its going to take a lot more time for her to take the bottle. Sure she has had a few successful feedings but more often than not she struggles. Last weekend she was only taking 5-10ml and now she takes 20-25 with a few 60ml feedings. Now I KNOW that is progress but even the 20-25 is a struggle and the nurse or we end up doing the work for her. The more time in the hospital means less time bonding with us and delaying early intervention. Its funny, the nurses all have different opinions. One will say "She'll get it in time" and sound very optimistic and the next will say the surgery isnt a big deal and "dont you want this baby home?" as if we are delaying matters.

Things are doubly tough now as my wife hasn't been able to spend as much time with Riley as she is by her dying mother's bedside yesterday and yesterday I returned to work (although I left early to spend a little time with Riley). This whole situation sucks the big one.

 
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If the doctors are delaying, they must be at least somewhat encouraged by Riley's progress.  We all know it can be incredibly difficult, but please do your best to not to get frustrated. Your little girl is alive and improving, that's the most important thing right now.  Continue to work with the docs and nurses and continue to advocate for your little girl.  Continue to be there for your wife and son.  You seem to be making the best of a very very difficult situation.  I applaud you for your strength.

 
Funny the nurse who said to me yesterday the tube was no big deal just fed her an entire bottle (75ml) with my wife witnessing.

 
shadyridr said:
Funny the nurse who said to me yesterday the tube was no big deal just fed her an entire bottle (75ml) with my wife witnessing.
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NOICE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

LET'S GO RILEY!!!!!

:clap:     :clap:        :clap: :clap:       :clap:

 
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My daughter was born 5 weeks premature and had an assortment of health complications associated with being a preemie.  We didnt get to bring her home for a month. We struggled for over three months getting her to eat 3-4 oz. on a daily routine basis.  Was really frustrating.  But it all worked out over time. Shes now a healthy, happy14-yr old straight-A student.

Just continue to be there for your family.  I applaud your strength throughout this whole thing.  Continued T&P's daily for you, Riley and the rest of your family.  

 
James Daulton said:
If the doctors are delaying, they must be at least somewhat encouraged by Riley's progress.  We all know it can be incredibly difficult, but please do your best to not to get frustrated. Your little girl is alive and improving, that's the most important thing right now.  Continue to work with the docs and nurses and continue to advocate for your little girl.  Continue to be there for your wife and son.  You seem to be making the best of a very very difficult situation.  I applaud you for your strength.
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So this.  Given where things were at the start of this thread this little child has made so much progress.

Also, my wife saw our bank statement the other day and grilled me about who this "shady" character was (Shady was named on the statement  :lmao: ).  Needless to say once explained this expenditure was rubber stamped - wife knows this hits me.  (We had our own (horrible) adventure during our first pregnancy - baby was super (AGPAR of 10, which is rare).  Mother, on the other hand, was fine until right after delivery - then it all fell apart and we went through an ordeal of mother having 7 hours of surgery and taking 14 (yes, 14) units of blood.  So, yeah, this hits a huge soft spot here for me.)  Sorry, I digress.  Back to pictures of super cute baby girl!

 
The uncertainty has got to be frustrating.  I don't know how I would have been able to manage it for this long as well as you are.  I have no words of wisdom, just that I'm still pulling for you, Riley, and the whole family.

 
Bull Dozier said:
The uncertainty has got to be frustrating.  I don't know how I would have been able to manage it for this long as well as you are.  I have no words of wisdom, just that I'm still pulling for you, Riley, and the whole family.
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At this point the only "uncertainty" I am focused on is when is she coming home. Thats all I care about now. Once she is home she will go through all the therapy necessary. I have great hope she will have a normal life. I think it happened young enough and caught soon enough that while she may have some delays developmentally and physically she will get there in time. Thats what I am holding on to for now.

 
It seems like she's eating more and more consistently.  That's great progress!

Thanks for the latest pic.  IMO (and obviously not getting to see her every day) she looks better / healthier than the other pics you have posted.  She is looking fantastic and is strong like her Dad.  Keep plugging away, man.  It's going to just keep getting better.

 
shadyridr said:
Life is just unfair sometimes.

I'm going back to work tomorrow. Saving a week for when Riley comes home.

Riley still very inconsistent with her feedings. Had feedings of 55ml, 30ml, and 10ml. She's very tired today. 

And to top it all off my MIL is practically in her death bed today.

Dont know how our family gets through both these at the same time.
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With your strength.  Everything you've done in your life put you in this position right now to do this.  You might not realize the tools you've been given throughout the years, but you have them.  You keep fighting like hell for your daughter and you comfort your wife and son every waking second.  You can sleep later.  When Riley is home.  On your chest.  Watching the Yankees.

 
What a wonderful update.   Keep fighting GB, Riley will know what kind of man her father is by the strength you are showing here.  

 
I'm so happy to hear that Riley is doing better. Hopefully she will eat better tomorrow. I am so sorry to hear about your MIL. 

 
The nurse who had her today is really confident in herself. She said I've been waiting to get this baby for awhile because the one time she fed her she took almost an entire bottle. Well the confidence was well founded. Riley took four entire bottles in a row with her. 75ml in each. Now don't get me wrong. This wasn't luck. Riley still has week suction but she has no problem with the swallow or breathe part so this nurse used a different technique than others. She basically moves her cheek and massages her throat at the same time. Best way I can describe it is if you have ever seen videos of vets feeding baby calves with a bottle.

 
shadyridr said:
The nurse who had her today is really confident in herself. She said I've been waiting to get this baby for awhile because the one time she fed her she took almost an entire bottle. Well the confidence was well founded. Riley took four entire bottles in a row with her. 75ml in each. Now don't get me wrong. This wasn't luck. Riley still has week suction but she has no problem with the swallow or breathe part so this nurse used a different technique than others. She basically moves her cheek and massages her throat at the same time. Best way I can describe it is if you have ever seen videos of vets feeding baby calves with a bottle.
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That's awesome!!!

 
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