Our New Normal: A week of a new life

Kaleb Eli Johnston
Monday, December 27th, 2010
6:22 am
9 lbs 2 oz
20.75 inches

The morning of Kaleb's birth Dennis and I left our house around 3 am and left my mom at home with Nolan. I obviously got absolutely no sleep the night before but was running on adrenaline. It was kind of nice to get to the hospital so early in the morning because no one was really there. I saw by the HUGE Christmas tree in the globe area and thoughts just raced through my mind. It was peaceful. I was taken up to pre-op and got my IV and all of the other monitors put on, I hate all of those wires! I definitely think an emergency c-section is the best way to have a c-section because when you have time everyone tells you all the scary things that could happen to you and everything seems so long and drawn out. Including the epidural, which was not bad at all with Nolan. This time around...not so lucky. I got a terrible anesthesiologist, Bernadette (I couldn't stand her name either...she was just terrible all around!) and she was training a new doctor, Constantine (he was really quiet in pre-op but was really helpful and great in the OR, before during and after the surgery). My epidural was terrible, it took forever...maybe around 45 minutes. With Nolan it only took about 10 minutes at most and was minimal pain. The lovely Bernadette put it in incorrectly and popped a blood vessel so blood got in the line and she had to try again, talk about friggin painful. I was SO mad. Not to mention she put way more tape on my back than needed which was itchy and annoying for days. My anesthesiologist from when I had Nolan was the one who took out my epidural a couple days later and we told her that we had her last year and we loved her! We told her that she helped me calm down by talking about her love for Big Brother, which I of course share. She also commented about the amount of tape on my back, seriously Bernadette! Oh and to top it off my epidural took a really long time to work, which meant I was rolled into the operating room and had my OB pinching me with big clamps...I felt all of it. I was terrified but eventually it kicked in.

Kaleb was born at 6:22am and was crying. My OB held Kaleb over the sheet so I could see him but it was too quick. Kaleb stopped crying almost immediately after being born and I just remember repeatedly asking if he was breathing, no answer though. From reading his records he did stop breathing for a while so he needed help but then was fine on his own. His APGARS were 5 and then 7. These numbers really made everything sink in for me. I majored in Child Development...I know quite a bit about the APGARS and knew this wasn't the ideal numbers. I don't know why but I was so focused on those numbers...like they told me who my son was going to be in the future or to what extent his delays might be. Terrible but I couldn't help it.

After surgery I went to post-op and had terrible shakes, I didn't have them with Nolan but knew they were common with an epidural. Mine were off the chart and very painful because I was shaking in my stomach too, right where I had just been opened up. I found that chewing on my hands and fingers helped calm down until anesthesia got there (not bernadette, thank GOD!) and gave me some great Demoral which really helped. Dennis left to pick my mom up and bring her to the hospital. I was told that I would be wheeled to the NICU to see Kaleb after post-op which I reminded the girls taking me to my room, they called over to NICU to make sure I could come see him and they said no because Kaleb was having a procedure done that would take an hour and I wouldn't be able to come down to see him until I could get in a wheel chair and get down there on my own. Anyone that has had a c-section knows that is no easy task, and with Nolan that took me a couple of days. I was automatically upset with the NICU, especially since I didn't know what procedure he was having...turned out to be his cardiologist work up. I did end up getting into a wheel chair that night (I was super determined) and my friend Jessica and I went to see him. His nurse was not the nicest of people, strike two for the NICU.

I was told by the NICU that they wouldn't release Kaleb to my room until the echo results came back (with no concerns) and Dr. Pollack (our genetic pediatrician) told them he could be released from the NICU. I spoke with Dr. Pollack the next day in the hospital who said she had told the NICU he could leave the NICU and come to my room the day before and that they had already gotten the cardio results back. I was really mad. When I went to the NICU that day I confronted Kaleb's nurse who just ran off and got the neonatologist on call that day, Dr. Pera. She actually told me that I was wrong and that no one had told me that Kaleb could be released to my room after those things and then told me that they had just gotten the echo results back, when I had found out HOURS earlier from Dr. Pollack that they were already back so I confronted her on that and then she just kept saying how Kaleb is not life and death and he is basically last on her rounds and she can't call parents all of the time. I told her that she may see a lot of babies but the nurse isn't over the same amount of children and could call herself, I told her I exptected to be updated on any results and consultations that Kaleb went through so that I could come downstairs and be there. She still told me that was impossible. She was extremely rude and talked down to me...even while I was crying. It finally came to a point where I had been told all week that Kaleb would most likely go home with me on Thursday, I was so excited all day! Dr. Pera said she does her rounds on Kaleb later in the afternoon since he was probably the healthiest baby in the NICU at that point so I called the NICU in the afternoon to ask about discharge orders. Kaleb had the same nurse all week, who was also VERY rude, and simply said that Dr. Pera already did rounds and is not going to allow Kaleb to be discharged with me and he might not even be discharged until next week. I obviously asked to speak to Dr. Pera and I was told that she had already left for the day. I was LIVID. I told the nurse that Dr. Pera should have told me that he would not be discharged and I felt that Dr. Pera did not want to deal with me again so that's why she didn't tell me. I asked why he couldn't be discharged if he was so healthy, she said because he has jaundice, which wasn't nearly as bad as Nolans. Clearly if his jaundice is the reason he is staying in the NICU then he should be under lights so I went to the NICU to make sure they were doing just that and of course, they weren't. I told Kaleb's nurse I wanted to speak to a manager, supervisor, someone. She brought me the head nurse for the day and I told her that no offense but she cannot help me other than listening. I explained to her why I was so upset this happened and she actually agreed that if Kaleb had never been admitted to the NICU he would have already been discharged because jaundice alone does not take a child to the NICU. They told me he wasn't under lights because his jaundice was not high enough to require lights for treatment...Nolan even had lights and had to be discharged home with lights. I was even more upset. I told the head nurse I wasnted to speak to someone over her and over Dr. Pera so she went and explained the situation with the director of the NICU, finally getting somewhere. The director told me she completely understood where I was coming from and the neonatologists are supposed to inform parents if their children are not being discharged that day. I was also able to tell her about all of the other snide remarks by the other nurses, like Kaleb's night nurse who told me one morning at 1am when I came to visit "not to wake him up" because she had to take a child to be scanned and Kaleb would need to eat soon. So if I woke him up she wouldn't be there to feed him. Uhm...last time I checked I am his mother and I'm clearly here and I will feed him. I don't need you to do that. If I want to pick up my baby, I'm going to. If I wake him up and he is upset, I will calm him down...that's my job as a mommy. I was so mad. The director took down names of the people I took issue with and told me she would speak to them because these things are not acceptable. She told me she would get the night doctor to re-evaluate Kaleb for discharge and see if he could reverse Dr. Pera's decision. That night I was discharged and Dennis and I went to the car seat and CPR class (all parents that have children in the NICU have to take it for their child to be released). During break we met with the night doctor who was AMAZING. He actually took time to explain everything to us about why he wanted Kaleb to stay one more night and if his levels go down he can be released in the morning. I told him that if Dr. Pera would be back in the morning that I don't think that would happen so he and the night nurse took it upon themselves to ensure Kaleb's blood testing was done before shift change so I didn't have to worry about that. I agreed for Kaleb to stay because everything was explained to me and they actually listened and agreed with what I was saying. Also, Kaleb's night nurse that night was a different lady who was AMAZING with Kaleb. She comforted him when he was getting another blood test, talked to him, cuddled with him...it was great to see that. His nurse all week had not done that at any point. Kaleb's jaundice levels came down over night and we picked him up the next afternoon. Although his nurse that day was old school and didn't want us to take any keep sake items, the technician came in and gave us his leeds (monitors that stick to his chest and wrist), blood pressure cuff, bracelet that held his oxygen monitor on, and other medical items. She was great! His nurse actually didn't even want to release Kaleb with his medication (for severe diaper rash) that was prescribed for him. She was NUTS!

It was so great to be able to take Kaleb home so quickly, most Trisomy 9 babies have serious eating problems and are in the NICU for quite a while. I was very thankful and really felt for the other parents that still had children in the NICU. During our stay at the hospital we met a couple who had a baby in the NICU since October. The day before Kaleb was discharged they scrubbed in behind us and said the baby was finally discharged. They looked so happy and we were so happy for them.

GOODBYE WINNIE PALMER HOSPITAL NICU!!