Some of you may have heard that Violet was hospitalized. Last week she started eating less & less but we discovered on Wednesday she had RSV but her O2 level was good so we didn’t have to be hospitalized for that & Thursday we went back for a recheck and her right ear looked a little worse than it had the day before so we started her on antibiotics for that. Friday she ate alright but not great but her amount of wet diapers seemed ok. Then Saturday her feedings got worse. Even tried to get her to eat all her favorite foods. Still nothing, she slept a lot & only had 1 wet diaper all day. Needless to say I was getting anxious. We decided in the evening to bring her up to the ER to get fluids.
The dreaded IV: One of the NICU nurses that knew Violet came down to try to get an IV started. She tried a couple of spots but didn’t get anything. Then they called for the big guns…anesthesia. He came down & was able to gain access on the 2nd spot. PTL (Praise The Lord) But like always don’t get my hopes up when it homes to IVs. It was out by 2:55.
Vi got super fussy & I couldn’t get her to settle down so I asked the nurse to come & check the IV, as they started looking and checking out things they realized we had lost it. Vi finally settle down & fell asleep.
Mama bear: Like I said, she finally fell asleep. I know all too well that Vi is NOT a good sleeper, so if she finally fell asleep she was going to sleep. Then someone came in and just wanted to “see” if she could find an IV. I said no. Not right now you aren’t. Obviously I want her taken care of but I also know she was incredibly fussy & hasn’t slept. She’s a baby, she doesn’t understand. Anesthesia came down to try around 5am, he brought out all the stops, ultrasound, fancy little light. Tried twice…nothing. I knew from the night before that putting an NG (Nasal Gastric tube) was an option. As much as I didn’t want that, I was pushing for that over the torture of the IV. I know nurses are so used to IVs but Violet does not do well. Say we would’ve gotten another one, what are the chances it would have lasted? Slim, that’s the truth. So all day Sunday we tried to feed her orally. By bottle & syringe. She still didn’t want much to do with it. Finally Dr Healy came back and did afternoon rounds on Violet and said it was time for the NG.
Monday: today was a pretty good day. Violet had nice awake periods. She really played for a while was “talking” and rolling from side to side & her eye contact was way better than it had been he previous 2 days. Her color was better today also. That was nice to see. Tonight when the doctor came in for evening rounds I asked if we could start to “feed” her. They had been doing continuous feeds throughout the day. Vi was never getting hungry. We also were informed that basically Violet needs 23 ounces of fluid a day for her “routine fluids” HA! She will never orally consume that. This is going to be a problem! I need to figure out how we get around that amount. Violet has never drank anywhere near what the doctors have wanted her to and she has done well until now. She has not listened at all when it has come to calorie intake either so we gotta come up with a “Violet” plan, not the book plan here. We’ll tackle that tomorrow. Jake stayed with her tonight & I will head back up in the morning. She is also on a little bit of oxygen because when she is sleeping she will drop a little bit. Again not something I am really worried about. We did check her urine tonight and that seems to be doing really well, the UA came back okay. When they took the xray to check her NG tube they noticed a spot on her lung and along with the RSV they have said she has pneumonia. So we will see how long this will take before we get home. I am just playing it one day at a time. Each day gets better and if I wasn’t at the hospital with her the doctors would not be able to see the improvements. I am not even sure I would be able to if it was for the short amount of time that Jake is there after work. Today she was fussy and sleepy.
So as the week went by we realized the importance of Violet’s calorie needs as well as the amount of fluids. We are still skeptical that she will really consume that much plus enourage solids anytime soon but we need to try. So where are we at today with Violet? We have opted to out a G-tube in (it’s a tube that will go into her belly and it will help her drink when she doesn’t want to & it will allow us to increase her calorie / fluid intake. Some other bonuses to the G-tube are we can get her meds in her even when she doesn’t want to take them. Her need for an IV will lessen because we can use the G-tube as a means for fluids if needed. So all in all, it is a good thing.
I got the chance to talk to a mom of a little girl who has a G-tube while we were admitted and it made things a little less scary. The mom showed me her daughters tube and the supplies to go with it. I think she will be a great resource as time goes on.
Sweetheart you are such a saint with 2 little angels. Your love is so strong for those little ones. A true inspiration.
Violet & your family continue to be in my prayers! Love & hugs to all.