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!

Day 3

Today was a day that Eric and I thought we would never have to expierence. We woke up and called down to the NICU and asked how Emma's night went and we were told that she was still stable and had no real changes. She was starting to pee more and more so that was a plus. They also told how they put her underneath a plastic wrap blanket to get more humidity and heat to her. We thought it sounded a little funny, but it made sense. She did have to go under photo therapy lights to help decrease her billirubin, which is what causes jaundice. She gets to wear cool sunglasses while she under the lights though! Dr. Parilla explained that they went ahead and switched her from a conventional ventilator, which allowed Emma to still take some of her own breaths over the machine, to a high frequency ventilator or what they call an oscillator. This is a ventilator, which constantly blows air and oxygen into her lungs, leaves nothing for Emma to do. The oscillator has two important rates that the doctors look at. One is the oxygen requirement. What we breath is referred to as "room air" which contatins 21% oxygen. They are able to give Emma more O2 depending on her needs. The other number is the amplitude. This adjusts the amount of pressure that is put into Emma's lungs. This will also help keep her Co2 levels down. It was more support but was a little more gentle on the lungs. Eric and I had breakfast and then we headed off to the NICU about 9:00. When we got there, the secretary at the front explained that they were doing thier hands-on (this is where the nurses assess the babies, reposition and change them) and said that she would call our room when the nurse was ready for us. Being naive, Eric and I walked right back to my room like nothing was wrong. When 10:00 rolled around, I started to get a little nervous and by 10:30 we were both pacing. The phone finally wrang and they let us know that we could come back and see her. We got into the NICU and scrubed for our 30 seconds like we did every other time we walked in. When we rounded the corner my heart sank into my chest. Every doctor and nurse was standing outside of Emma's room and I saw a very familiar cart parked out in front of her door. The cart was a code cart and had all of the respiratory equiment on it. Dr. Parilla walked us into her room as she began to explain what had happened this morning I began to cry. She told Eric and I that her breathing tube was pulled out and that Emma was not able to handle breathing without it. She soon dropped her oxygen saturation and then her heart rate. They had to do chest compressions on her while they tried to get her re-intubated and hooked back up to her ventilator. Dr. Parilla then asked us the question that I hope no parent ever has to answer. She asked us how far we wanted to push her if this was to happen again. In other words, when do you want us to stop trying to save your daughters life. Eric and I both decided that Emma didn't need to suffer and that if this did happen again and Emma's heart would not beat on it's own after 20-30 minutes of chest compressions, that we would have to let her go. I can't even begin to tell you what that feels like and how much it hurt to say those words. At this point, Dr. Parilla explained that Emma's "honeymoon phase" was not going great and her survial rate at this point was not looking good. They went ahead and ordered a cranial ultrasound of Emma's head to see if there was a bleed present. The tech came and went and we finally got word that the ultrasound was normal. Eric and I just sat in her room and looked at her, praying that God would save our baby, whether that meant keeping her here with us, or taking her up there with him.

Day 2

To my surprise this morning I received a phone call from my sister Ann who was on her way from North Dakota and for even more of a surprise, my sister Michelle had just departed Kentucky and was on her way too. Dr. Parilla came into our room a little after that to give us an update of Emma. She told us that Emma's first night was ok and that the next few days were called the "honeymoon phase." This meant that these days should go very smooth, but than she could take a turn for the worst. Dr. Parilla explained the possibility of Emma having brain bleeds and they gave her a medication to try to prevent it. We would not know anything until they did an ultrasound of her head, which would be sometime in the next 7 days. They would also be giving her antibiotics to try to prevent any infections. Another big concern that the doctor has is that Emma has not peed in 24 hours, so they were going to start a drug called Dopmine to help get her kidneys going. We were informed that her red blood cells and platelets were also low and her sodium was high so they would be watching these levels over the next few days. She would be getting infusions of platelets and red blood today and would most likely need more over the next few days. I was able to get up and walk today so Dr. Parilla walked Eric and I down to the NICU where we were greated by Anne, one of the nurses who was in the operating room when Emma was born. She explained to us what was going on clinically and showed us all of the gadgets in Emma's room. They had her under humidity and heat due to the imaturity of her skin and the fact that she could not regulate her temperature. She pointed out the IV that was in her belly button and that they could draw blook from this so that Emma wouldn't need to be stuck all of the time for labs. She explained about her blood pressure and heart rate and although they were both ok she could still have some cardiac issues. There is a hole in the heart of a baby called a patent ductus arteriousis (PDA), that is supposed to close when a baby is born but sometimes it doesn't, so this would be something they would also be watching. They would be doing an echocardiogram, which takes a video of the heart pumping, to see if Emma's was closed; if they found it open, she may need surgery to fix it. We later met Debra, one of the neonatal nurse practioners. She would be on duty for the next 24 hours and would let us know everything that was going on with Emma. Anne gave Eric a book from the NICU before she left for the night. It was a book about preemie babies (Emma is considered a micro-preemie), she says it has really good information in it. He stayed up until about 2:00am reading through the book and what we would need to be prepared for in the coming weeks. The picture posted today is a picture of Eric's wedding band around Emma's wrist, we hope that this gives you all an idea of how small our baby truly is.

Day 1

Last night went well, I was even able to feel the baby moving during the night. The heart rate was overall nice and steady. I was very uncomfortable laying on my left side for hours on end, but I would do anything I needed to if it meant that the baby would be ok. We had a consult with Dr. Kalter, a neonatal-perinatologist today. This is a doctor who specialized in babies who were still in utero and had not been born yet. Dr. Gallaher stayed overnight with us last night and had talked to him a few times on the phone to see what he thought he should do. Dr. Kalter came in to our room at about 12:30 this afternoon to talk to Eric and I. He went over our history and talked to us about what he thought may be going on with the baby. He and Dr. Gallaher both thought that the baby possibly had the umbilical cord wrapped around it's neck. He discussed the options, but in the end his recommendation was what Eric and I didn't want to hear. He told us if this was his wife and child in this situation, he would make the decision to deliver the baby now before the heart rate dropped too low and we wouldn't be able to bring it back up. Dr. Gallagher said he would give us time to decide and he would be out in the hall if we needed him.

I will say that this was the hardest decision Eric and I have ever made, but we had to do what we felt was best. Emma Jane Engles was born at 2:00pm via emergancy c-section. She was weighed 425 grams (15 ounces) and was 10 1/2 inches long. She did cry when she was born but was then intubated and placed on a ventilator to help her breath. She then received the first of three doses of Surfactant, a drug which would help mature her lung until she is big enough to make her own. I made it out of the operating room 2 1/2 hours later where I was met by Eric and Dr. Gallagher. The first question I asked was if she was alive. Dr. Gallagher explained that the surgery went well and that she was alive, but small. He also discussed everything that could be wrong with her because she was so small. The neonatologist then came in and explained what was going on with Emma and let us know that they had stabalized her. She then asked Eric if he would like to meet his daughter. Eric came back with a picture and then the grandparents and aunts and uncles, two by two, were able to go back to the NICU (neonatal intensive care unit) and see her. And when 6:00pm came it was finally my turn. I was not able to walk, so the nurses pushed me back in my bed. They parked me right next to her isolette where I was able to see her. Although she looked like a baby bird who fell from her nest, she was the most beautiful thing I had ever seen.

March 11, 2009...the day it all began

This whole thing started with me being a little neurotic, being a first time mom-to-be and all!! I stopped feeling the baby moving today so I called Eric. He told me to call the doctor, so I did. They wanted me to lay down and count how many times I could feel the baby move in one hour. That number was only 1 when it should have been more then 10. They asked me to come in to the office to be monitored. I arrived to Dr. Gallagher's office at about 6:30 and they found the heartbeat with no problems. He told me he would be back in about 15 minutes to see the recorded beats of the baby's heart. When he came back, he told me to get up and go into the ultrasound room. After a peek at the ultrasound he told me to go straight to the hospital. I had no clue what was going on, but I knew it was serious. I got to Mease Countryside Hospital at 7:00 pm and was met by Abbe, one of the labor and delivery nurses. She got me to my room and got me hooked up to everything that would monitor the baby. My mother showed up next with Eric not far behind. The problem that we were having was the baby was dropping it's heart rate and was not able to pick it up fast enough. This was the equivalent of you or I holding our breath for 40-60 seconds. Dr. Gallagher arrived to the hopital and was preforming another ultrasound when he told me that he was going to have to deliver the baby right now. I remember looking up at Eric as they wheeled me away, leaving him behind and I began to cry. The nurses told me that I had to settle down for the baby's sake and that everything was going to be ok. Abbe promised me that she wouldn't leave me and that she would stay by my side through the whole thing. I ended up in the operating room where I then stayed for 4 1/2 hours. When they turned me on my left side, the baby's heart rate was nice and stable, so they figured they would keep us just like that instead of delivering right away. Abbe stayed with me, just as she said she would, and then at about 12:00 am they put me back in my bed and wheeled me back to my room. They kept me on bedrest on my left side so that the baby would be stable overnight. The plan was to keep us this way to try to buy us some more time before we would be forced to deliver. The day was long, but so far so good.