August 19

I am in the works of re-vamping Emma's entire website, as you can see. We are trying to merge her journey from day to day to week by week. Please excuse my mess...it may take me a few days to get everything updated. I have decided however, to keep the first two weeks as a day by day due to the overwhelming amount of information. I will keep you all updated as I post along the way!

I guess this gives everybody the opportunity to remanice the last 18 months of Emma!

Thanks
Jane

Day 12

Today there was really no change with Emma, same old stuff. She was put back on her belly and loved every minute of it. Her oxygen requirements have been up and down today and the respiratory therapists are adjusting her oscillator as needed. She did have another set of blood cultures drawn today, so we will have to wait and see if they will stay negative. She is still off of her phototherapy light and seems to be doing ok so far. She is still peeing, but not enough and is still puffy. They are going to restart the dopamine and see if they can get some of the excess fluid off of her. They are weighing her, but I am trying not to think that she is 675 grams. I will get excited and then tomorrow she could loose all of that water weight and be 500 grams. Eric and I are just waiting to see when it will be more accurate.

Day 11

I thought I was goning to be brave today and go to Target and go home with my sisters Ann and Kerrin. There were a few things that I needed at the store and from home, so Eric was going to be at the hospital with Emma while I was gone for a few hours. This didn't work as planned. Since it was a weekend, our doctor was home enjoying his day off and we had a new doctor that we didn't know. Also, Liz was off and so was Tracy. So it was our first day there without seeing a familiar face. I will not get into details, but put it this way, I got 7 minutes on the interstate before Eric called and I had to turn around and go back to the hospital. He wasn't sure what was going on and the nurse wasn't being all that nice. Dr. Torres was the doctor today and he told us that Emma's chest x-ray looked real bad. This was a little upsetting, but what could we do. He told us that her labs were ok, and she was started on an insulin drip to try to control some high blood sugar levels. They also were turning her phototherapy light off today because her bilirubin was down. They said it might only last a day or so and then have to go back on. this was ok to us, at least Eric and I were able to see her without the eye goggles on. Her nurse today really didn't want to touch Emma, and was doing minimal everything. She never repositioned Emma and she only switched out saturated cotton balls from her diaper instead of changing the whole thing; a big change from Tracy. Emma's oxygen requirements were all over the place too...overall, just a bad day. Eric and I didn't want to leave, but we had to at some point. We just have to remember, those nurses are only here for 12 hours and then we get a new one.

Day 10

Eric and I were up early again and headed to the hospital. The Ronald McDonald house is only about a four minute walk to the hospital, so it's nice being able to get some fresh air on the way over before being trapped in the busy NICU all day. We do leave for lunch and dinner, but are there pretty much all of the other hours of the day. Tracy was there again today and gave us an update from the night time. She had some more labs drawn and they drew some more blood cultures to see if the antibiotics were killing the bacteria yet. We learned that the 14-21 days didn't start until both blood cultures drawn were a final negative from the lab. That could be a while if this is a really bad bug like they say. She was down to 30-40% of oxygen requirement on her oscillator and her amplitude was between 19-21 all night. This was actually pretty good considering where she had been before. They said that they had to reposition her breathing tube today after seeing it was a little high on her chest x-ray. Her labs were ok this morning and her white blood cell count was up to 6.6, so that is a good sign. She is getting TPN still in her PICC line in her leg and she now has an IV in her left hand for blood and platelets, which she would be getting today. Her blood gas this morning was ok except her Ph was 7.19, so they would play with the numbers on her oscillator to help that. Tracy had her on her belly today, it kind of scared me because I have only seen her on her back, but she looked really comfortable again. She even had a bow on her head and what Tracy called bikini cut panties (preemie diapers cut to Emma size). This brought us back to Liz, our awesome nurse at Mease, who loved to get Emma looking and feeling great. She is still peeing, but still puffy, so we will see what her true weight is hopefully in a day or two. Her skin is still not great either. She has a couple of little scabs and open areas, but they said that her skin is so fragile, that it will take a while for it to mature.

Day 9

Eric and I were up early and at the hospital first thing. We met Tracy her nurse this morning. She gave up a little update of how Emma's first night in her new place was. She said she did ok throughout the night and that the doctors and nurse practioners would be rounding soon. We were all assigned teams when you get admitted. We were the red team, so we were allowed to be in the pod when our team talked about our baby, but not when they or any other team was discussing another baby in the room. Tracy told us that these were her favorite babies to care for, the micro-preemies. She had her on her side and for the first time, I think she was actually comfortable. Tracy really made Eric and I feel comfortable also, which was nice considering we were both very overwhelmed. Dr. McKay and Liz made it over to us in the later part of the morning. They started talking about Emma's history and then they would discuss the plan. They said that her umbilical line was not what was affected by the bacteria that they found, but it was in her blood. The bug is called klebsiella and is difficult to treat. They consulted the infectious disease group to help determine what the best combination of antibiotics would be. She had a chest x-ray done, which she would get every day to look at any improvement with her lungs, so far none. They ordered Lasix, a diuretic that will help get rid of some of her swelling and will keep her peeing hopefully. She would be receiving more blood, and thankfully, Eric's donated blood made it over with her last night and she would be getting that today. They wanted to also try to discontinue her Dopamine because it is such a low dose and her urine output had been good. They have her on 2 types of antibiotics, but are saying that she will most likely have to be treated fro 14-21 days. Her weights really don't count right now because she is still so puffy, so when she doesn't have a lot of fluid on her, we will be able to see what her true weight is. Eric and I don't sleep very much these days, but hopefully it will get better.

Day 8

Today was a huge day. We were moving out of Mease Countryside and heading over to All Children's Hospital in St. Petersburg. Emma was going to expierence her first car ride. Dr. Roa came in to our room this morning and explained that if Emma did need a central line placed surgically that All Children's would want to take her now and stabalize her themselves. This way they would be able to evaluate her for a few days before making any decisions on what they were going to do. He then went on to tell us that there is a reason our little girl is here and that is something that only the man upstairs can answer. He said that he didn't think she would have made it this far and done as well as she had and he really wished us the best. He told us we had a fighter, and for her sake, that was a good thing. She did have to have some platelets again before the transfer, so they were infusing those this mornign before the call for the transfer went out. The All Children's ambulance showed up around 11:00 am. It took them a long time to get her loaded into the little travel bed. I couldn't watch them move her from her bed to theirs. I started crying and ended up with my head burried in Eric's shirt. The transport team and Anne in the NICU told me that she was ok and that I could look at her. They explained how she was still going to be on a temporary, travel oscilator and all of her medications would still be running. They were hoping to have a nice smooth ride and they were going to try not to use lights and sirens if they could avoid it. They said that this makes drivers nervous and can lead to more issues on the road than needed. They told Eric and I that babies tend to like the car ride and we could follow if we wanted. They asked me if I wanted to say goodbye and I said no, that this wasn't goodbye and that I would see her in a few hours. Eric and I opted not to follow the ambulance. When they would arrive at All Children's we would have to sit in the waiting room until they had her settled in, which could be a few hours, so we went home for a little while. We got home and it already felt weird. They told us they would call as soon as she got settled in and let us know how everything was. I wanted to take a shower so I made Eric come and sit in the bathroom with me, just in case something happened, he had the phone at his side the whole time. I started getting nervous around 2:00 pm when we hadn't heard anything. What do you know, the phone wrang 5 minutes later and much to my surprise Liz, the nurse practioner from Mease was on the phone. Eric was talking to her and I could hear them. She was working over at All Children's and was assigned to Emma and would be following her through until discharge as her main practioner. You have no idea what this meant to Eric and I, it was very comforting to know that she was there with her. She made sure to tell Eric to make sure that I knew Emma arrived and she was settled in. We headed down there as soon as they hung up the phone.

It was very overwhelming when we first walked in. She was in bed space 15, which meant nothing to me, until I saw it. The NICU is set up with 4 pods each holding about 8 babies. She was in pod 2 and the place was hopping. It was very busy and noisy. There was no privacy or dividers up between each bed space. The nurses were all very busy and had 2-3 patients each. At that point, I started to cry and realized that we made a mistake. We gave up the private room and 1 on 1 nursing for this? Liz came in and tried to settle me down and explained to me that it was going to be ok. Eric and I talked to the neonatologist, Dr. McKay, and he explaind what they were going to do. They had to do labs and echos and ultrasounds and everything that she had there, but now here. She was very puffy still and her admitting weight was 650 grams, which is a lot more than she weighed last night. They said that it was most likely water weight from her not peeing for a day or so and it could also be the difference in scales from one hospital to another. It took them a while to tuck her in and get everything done. Eric and I left for the night and headed to the Rondald McDonald house, which would be our new home for the next several weeks.

Day 7

When we got down to the NICU today, we found that Emma was back on dopamine. She managed to go 12 hours without peeing again. She finally peed at 3:00 pm today, this was a big relief to Eric and me. Dr. Roa told us that he thought she may have sepsis. He explained that with the sepsis, her kidneys would shut down, her oxygen requirements would go up and it could be the explanation on why her cells were not producing on their own. They went ahead and got some blood for cultures to see if she had bacteria in her blood. The results would be back in about 24 hours and they would be able to identify the infection and treat her with the proper antibiotics. At this time, they started a few diffent ones for precautionary reasons. Because they were suspecting she has an infection, they stopped her little drops of breast milk. She could basically get a rotten gut (NEC) from getting food and not being able to digest it. This was serious and required surgical intervention, so the decision to stop the feedings was easy. Dr. Roa also mentioned possibly having to take out her UVC and PICC line, as these could be two easy hosts for bacteria. He then mentioned surgically placing a central line. This is sort of like the PICC line but it is tunneled under the skin and can be kept for a long time. They will also be able to draw labs from the line, so again, she will not need to be stuck for labs and her blood gases. The problems with inserting the central line are one, if she has an infection they have to wait until she is being treated with antibiotics for at least 72 hours and two, they do not do any surgeries at Mease so she would have to be transferred. This was something that he told Eric and I to think about; our choices were St. Josephs (preferred by Mease) or All Children's (preferred by us). The choice was simple, if she had to be transferred, she was going to go to All Children's Hopsital in St. Petersburg. We would sleep on it and hope in the morning there would be no infection and no talk about transferring her.

Day 6

To our surprise today, when we walked into Emma's room we saw a new ventialtor! They were going to try to wean her off of the oscillator to see if she was able to hadle breathing on her own. With all of the excitment, I think that we lost sight of how small she was! After about 3 hours on a conventional ventilator (the same one she was on during Day 1) she was right back to the oscillator. She was still getting the little drops of breast milk every 12 hours and Eric's blood came in today so she would be getting that along with more platelets later too. They discontinued her Dopamine this morning becuase she was doing well on such a little dosage, so they would be watching to make sure she was still going enough overnight. Her white blood cell level came back lower today, even after the medicine. Dr. Roa wants Emma's white blood cell count to be around 6,000; today her level was 500, so he was very concerned. He explained that with all of her blood cell levels being so low, it could be that her bone marrow was so imature, it is not able to produce the cells itself. This was not a good thing and with the look on the doctor's face, it seemed to be very serious. He wasn't sure if her body wasn't making the cells or if it was destroying them. To top off the day of not so great news, Emma stopped peeing tonight. Her weight was up to 495 grams, but none of it was real weight, it was all retained fluid. Another day has passed and she is still with us, so that is what Eric and I are taking with us to bed tonight.

Day 5

Today when we got up, the nurse asked when I wanted to be discharged. I told her that the afternoon would be fine. She told me that we would be able to stay in our room too and that the unit didn't look like it was filling up, there were plenty of extra rooms. Eric and I got up and headed over to the NICU. We were pleased to see that she had a good night. Her blood gases were even good enough that they decreased her oscillator to 38% O2 and an amplitude of 21! Because her white blood cell count was low this morning, she is going to get two different drugs called IVIG and Neupogen. These will hopefully help her with building an immune system. They were able to decrease her Dopamine by half today, so that is a big plus. She was also scheduled for an echocardiogram this morning to see if she has a PDA or not, and to our surprise she did not. The ductus arteriosis was closed...this meant no surgery so far! The excitement continued when they told us that they were going to give her a little breast milk to try to stilmulate her bowels. They were giving her 1 ml every 12 hours and would move up little by little if she could tolerate it. Eric left this afternoon to donate blood and so my family was in to keep me and Emma company. We thought that she still looked rather puffy from retaining water, and her weight showed it with a gain of 25 grams. She is now topping the scales at 480 grams (1 pound 1 ounce).

Day 4

Today was rather uneventful compared to yesterday. Dr. Parilla ended her rounding time yesterday so we are now under the care of Dr. Roa. He reminds Eric and I how small she is and her survial rate isn't the best. She was now on 48% O2 requirement and an amplitude of 24 on her new ventilator, which isn't great but not the worst either. They are drawing blood gases to check her O2 and Co2 level about every 4 hours and since they were able to draw blood from her UVC (umbilical vein catheter) she wasn't having to get stuck all the time. They inserted a PICC line in her right leg. This is an IV that can stay in for a long time. They will use it for the medications that she gets while her blood and platlet transfusions are going into the temporary IV site in her arm. Eric is scheduled to donate blood tomorrow so that Emma can have his blood from now on instead of a strangers. They have also had me using a breast pump for the last few days. She is not going to be eating for a while so, they are freezing the breast milk for when she is finally ready to eat. She is on what they call TPN which will give her all of the nutrients that she needs and it all goes through her PICC line. Her weight hasn't moved much, she weighed 455 tonight and no gain on her length! Eric and I looked at her for a while and then headed off to bed. Tomorrow I will be discharged, but the hospital will let us stay as long as there is a bed available. We'll keep our fingers crossed that the labor and delivery unit stays quiet for the next few days!