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!

Bringing the Baby Home- IT JUST GOT REAL!

So Dot has been home for a little over a week now. I can still remember the day of her surgery the doctor telling us as long as everything continues to go well, she will be able to go home in a couple of weeks. I couldn't believe we were finally here! For awhile I refused to let myself believe it. Then as we got closer I felt excitement and happiness to be able to finally have our family back together.  Then as the day got even closer, some new unexpected emotions set in.  Emotions that no one has ever talked about when you have a baby in the NICU.

The first strange and overwhelming emotion I felt was fear. I realized I was absolutely terrified to bring my little miracle home. For 5 1/2 months my baby had been cared for and taken care of by nurses and doctors.  I was NOT a nurse or a doctor.  What if she stopped breathing? What if her feeding tube falls out?  What if she refuses to ever take a bottle?  What if she can't handle being home?  All these questions running through my head making me more and more afraid something would go wrong, and maybe it wasn't time for Dot to come home just yet. At least not until I had completed nursing school...

Because of all the fear, my anxiety was through the roof.  When it comes to unknown situations, I am a worrier. I constantly worry about how the situation might play out and think of all possible outcomes so that I can prepare.  But I really didn't know how to prepare for this.  At home, we had a schedule worked out pretty well.  How would Dot fit into this schedule?  Could I do it all? I was anxious how Dot would react to being around her sisters and the home environment all the time.  I worried it would all be too much for her at once.  Her sisters are movin and groovin, which is great, but what if they accidentally hurt Dot?  On the outside I was calm and excited, but inside I was a knotted up mess.

I felt so sad and guilty inside because I felt like I should be more excited about my last baby coming home.  I wanted to be as excited as I looked. Don't get me wrong, I was happy and excited to have her home, but I just didn't know if I was prepared to handle it all. I was terrified it would all fall apart if I couldn't handle it, and my babies would be the ones to suffer.  With Alyx and Luci I knew their likes and dislikes, what makes them giggle and cry, when they are scared or angry.  I realized with Dot, the nurses knew these things better than I did. I felt guilty because I hadn't bonded with my baby to know these things yet.  I felt like the worst mother ever, and that feeling is awful.

The first night she was home I didn't sleep much at all. Every little sound and beep woke me up and had me running to her room to check her. A few times I went to her room just to watch her breathing. Even though I knew she had a monitor to tell me everything was ok, I just needed to see for myself.  The first day was tough. Working out a schedule was most important so not knowing what Dot's schedule would be was a little tricky.  Thank goodness I had my husband to lean on that day. Even with 2 of us there, it was still a little hectic. Mark and I went through everything together, setting up her feeds, hooking up her tube, putting on her sensor, checking her monitors,etc. By the end of the day, with my hubby's help, I felt a little more confident.

I was definitely worried about the first day by myself, but as it turns out, I was able to manage everything pretty well. Now here's the silver lining to my story...it's not all bad.  Once Dot was home, I could see how much happier she was now. She giggles and smiles all the time.  She wants to be on the floor with her sisters.  She loves her room that we set up for her.   And best of all, I have had some major bonding time with my baby.  I no longer have to schedule a time to see her.  I can be with her and love on her whenever I want.  I can tell you without a doubt what makes my baby happy and sad, what makes her giggle and cry, what she is scared of and what makes her angry.  Being home has been the best thing for Dorothy Jo.  She has even started taking the bottle a little at a time.

I wanted to share this because just in case someone else ever has to go through the NICU experience (I don't wish that for anyone.), know that you are not alone in these feelings.  And if you know someone going through the NICU roller coaster, know that they could be feeling the same way.

I will say that I can now fully 100% say I am so glad to be home with all my babies, and I know I can handle this.  All my fears, doubt, anxiety, and guilt have faded away.  I just feel love for my family (and some exhaustion)!