The Terrible, Horrible, No Good, Very Bad, Hospital Stay

What a week it has been! There are naughty 4 letter words I could use to describe my week, but the only horrible awful word that comes to mind has 6 letters! REFLUX! It has taken over our lives. Starting all the way back in March with Alyx and Luci to now with Dot reflux has caused us more trouble and stress than anything else.  Dot has always been a spitter and had reflux even when in the NICU.  However, about a week after coming home, her reflux seemed to get much worse. She began having more and larger vomiting episodes. And then she started choking on her spit ups.  Each spit up episode was so hard to watch. She would cough and gag and then try to get the spit out while continue to breath, gag, and choke.  She would do this 5-6 times a day.  It had really started to take a toll on her breathing. She looked like she was working so much harder to breathe, her chest was rising up and down much faster and harder. Her diaphram was showing signs of retraction.  All this combined to make Dot's home health nurse want her to have a chest x-ray to make sure she hasn't aspirated anything into her lungs. So we went to the ER.  While in the ER they gave her more oxygen and tested her for a respiratory infection. They also did a chest x-ray. The x-ray showed no aspiration and on the good news side her lungs had gotten a little better not worse. No infection was found either, but they still wanted to keep her for observation due to her work of breathing. They also wanted her newborn doctor and the GI doctors to see her to try to help her reflux and respiratory issues.  We went into the ER around 11 and around 6 went up to the floor to her room.  This is where our entire stay started to fall apart.  

   

Nutrition is extremely important for Dot. She needs every calorie to help her gain weight, especially when she vomits most of it.  I brought one feed with me, but for the 6 I knew we would need to get that together.  Her food is a little complicated- a mix of breastmilk and formula- but I said something to our nurse at 5 to help us start getting it together.  We traveled to our room and made sure to ask about the feed. They took down the mix and amounts of everything and said they would get it together. Mark and I decided to get something to eat while she was sleeping and figured she would be eating within the next few minutes, so we were very surprised to come back around 7:30 and she still had NOT been fed.   I went to find out what had happened and was told they were working on finding the formula. Mark sat he back up in her crib (she had scooted sideways) and in the process accidently disconnected her monitor.  Now her monitor sat unconnected for almost 20 minutes with no one coming to check on her.  Now mind you I know the monitor goes off and on like crazy but when a baby is admitted for respiratory distress looking at the monitors should be closely watched.  Still I figured they were a little flustered and unsure of the formula mix (it is pretty complicated), so I cut the nurses some slack.  Finally Dot ate 8:00 pm. Now this had set all her other feeds off time, which would also affect her reflux since her stomach had 6 hours to empty and would not have as much food there as normal.  She ended up only spitting up 3 times the entire stay and none of them were anywhere close to what we experience at home.  

Due to our concern of monitoring her, (it was much different from the NICU) I decided to stay with her overnight.  Overnight everything went okay, nothing much happened. 

And then morning came...about 9 in the morning the charge nurse comes in and says they would be bringing in a 15 year old boy in to room with Dot. I instantly got upset and said no way! I am a grown woman with a premie baby, who had just been released from a neonatal ICU with immature lung development. I am also pumping and the curtain does not provide privacy for me to do this.  My baby would be unmonitored (other then from her maching and vital checks every 4 hours and visits from her nurse) with a teenage boy.  And on top of that if she had to stay the night again, I would not be allowed to stay with her.  I said if that was the case, we would need to be discharged immediately or transferred to a different hospital.  So the nurse said she would see what could be done.  I knew from the ER the rooms were not private (not exactly the happiest of news), but I thought they would room babies with babies (or of a similar age). The nurse comes back and says our only option is to move an adult girl (not sure what age that meant but at least a teenager) into the room. Again I was not happy with the situation and said I would not be comfortable with this situation.  The nurse again walks out to see what would happen with the situation. Little did I know 20 minutes later, they are wheeling in the adult girl.  No options given, so again I asked to be discharged. I am just outraged that the hospital would allow this type of rooming situation for a preemie who has  been very sick. 

I agreed to stay for the consult with the doctors with the agreement that we could be discharged that day. The day seemed to pass by slowly with Dot pretty much sleeping most of the time. Although, again I had to remind the nurse to feed my daughter because they were 30 minutes late and still had not come in to feed her. So after waiting most of the day for the doctors, GI finally came and talked with us.  We decided to start meds and adjust her feed amounts. The newborn doctors never even came to see her, kind of disappointed. Based on her chest x-ray, they said they would see her on August 11th and advised against starting meds to treat her reflux because of potential side effects. Finally around 5 in the evening we were discharged and released. I was so glad to leave the hospital after the last 24 hours of mess.

Hopefully with meds and new feeding schedule something will get better. As soon as we got home and started her next feed she was back to vomiting (3 different times just in that feed). She is still having heavy breathing and retraction but because everything checked out fine all we can do is wait and hope it gets better. And if she gets worse know that we won't be returning to that hospital. This little girl has been through so much already, I just want her to get better and be able to enjoy being home with her sisters. She is such a fighter and most definitely my hero!