The rest of the story

Okay I finally have some time to post this. It will be the shortened version as it is just to long otherwise.



It started when we finally got her home. We noticed that she was super gassy and wouldn't really eat. We talked to the public health nurse who said to give her some formula. I didn't really want to but we did. Well about an hour later it all came out. Then around 9 at night she finally had a great feed. I was happy and put her in her crib. She wasn't sleeping but she wasn't crying. I fell asleep but woke up at 12 and decided to try and feed her again. I got her out of her crib and took her to the chair and she vomited coffee ground emesis. At that point I knew we had to go to emerg. I thought that maybe I just had a bleed on my nipple and she had drank that. Well it all fell apart there. We took her to emerg and they started running a bunch of tests. First they checked her blood sugar and it came up as 0.2 they even checked it a few times cause they didn't believe it. With a blood sugar like that she should have been in a coma but yet she was still kicking and screaming. They had to shave all the hair off the sides of her head to put in IVs. I was so upset cause I liked her hair. They had us wait in a waiting room away from her while they did some of the tests. We had rushed out of the house so quickly we remembered diapers and clothes and everything for her but forgot about me. I had just given birth and yet didn't think to pack myself anything I needed. I also had my milk come in during the night while we were at the hospital. They had to set me up with a breast pump to use. Then after doing many many tests and hooking her up to 5 different antibiotics and an antiviral and had put in 2 IVs and a catheter and done a lumbar puncture they finally came to tell us what was happening. They weren't' sure what was wrong with her but they were going to get us transferred to Children's with the infant transport team. We were scared cause we knew if she had to go to children's then it was bad. The transport team got there and we thought they would just grab her and go but that wasn't the case. It took them 6 hours to stabilize her to be able to go. By this point we hadn't slept in 4 days and were so tired and worried I can't imagine we made much sense to anyone. We had to call my parents cause I would be the only one allowed to go with her and Tony wouldn't be able to drive out there himself. I guess I never knew what it was like to be the parent of a child that had to be medivaced out of a hospital. It was one of the infant transport team that noticed that she was having a seizure. Because of that they wanted to sedate her. When they sedate a baby they also have to then intubate them in case they stop breathing. She did great and although she was out she still breathed on her own. When we got there we were taken to the NICU. This place was great and they treated Tony and I great as well. We were one of 2 term babies in there though as most are preemies. It was horrible to see her hooked up to so many machines and all sorts of tubes. She had the tube in her throat so she could breathe. A tube in her nose into her stomach to drain out the fluid as they weren't feeding her yet, a catheter and 3 IVs. They then put in another IV into her umbilical line cause she still had the stump they could. They dug the stump out though so we will never know when it would have fallen off. They also inserted a line directly into an artery in her arm so that they could get blood. She was there for 11 days total with us staying at the hospital the whole time. During that time she has 8 EEGs to monitor her brain waves and was on a continuous brainz monitor to watch her brain waves so we could see when she was seizing. She also had 2 MRIs and another lumbar puncture. She got better and better every day and eventually was eating normally and had only her tube down her nose in case they had to feed her that way. She was sneaky though cause during rounds when they were discussing if they should take it out she pulled it out for them. She was good at removing tubes and IVs and had to be tied down to stop her from doing that. They finally decided that they had figured it out and by giving her phenobarb she would be fine. There was still lots of metabolic tests that were still out and they were waiting for those results. They did think she might have something called gluconeogenesis which would mean she couldn't have sugar. It also would mean that she couldn't have fruits or veggies when she got older. They did a skin biopsy for that test and we wouldn't have the result till she was about 8 weeks old so until then she could only have breast milk and the phenobarb had to be pill form crushed for her to take it. At this point she had skin in France, Spinal fluid in the states and DNA in Alberta. We got to take her home on the Friday before Mothers day and we were just so happy to have her finally home.

We had a great week home with her as Tony took another week of holidays to be there with us. Then on the Friday morning she started having another seizure. They told us this could happen if her levels got a bit low so we took her into Langley emerg again. After spending all day there they had us transferred upstairs to a room. We were there all weekend with her having seizures on and off the while time. They had to give her Valium to stop them. The doctor was always talking with the neurologists at Children's to find out what to do. On the Tuesday Tony went back to work. This is when they decided to send us back to children's as they weren't' getting anywhere stopping them at Langley. We got infant transported in an ambulance but this time Lauren didn't have to be in an incubator. We went with lights and sirens though. I now know that people are idiots and no one gets out of the way of ambulances. At one point our driver said that he might have to get out to get mad at someone. I told him I would do it. You don't piss off a mother with a baby that is sick. We got to Children's and we went to the emerg there. They had to do another EEG there cause she started seizing then too. They weren't much help in the emerg and the neurologist finally got there and had us transferred upstairs to a room. It was awful. It was a 3 bed room in the middle of the night where one of the other parents was screaming at her kid to be quiet. We had a tiny area with a chair that we were supposed to stay in. Then at about 3 Lauren started seizing again. This time no one was coming to help us. It wasn't till 7 at shift change that the day nurse came and helped us out and was great. She had to give so many meds cause the neurologist showed up and kept trying to stop it. She went on like that till 11 so it 8 hours of seizing before they decided that we would have to go to the ICU and have her sedated and intubated again. Tony and I held her right up till the took her away in the ICU cause we knew we wouldn't be able to hold her for a while again. We had no idea it would be 3 weeks till we held her. She ended up in the emerg for 3 1/2 weeks with no idea what was going on. Every time they tried to decrease the sedation she would seize for hours till they got it back up again. She was on such high levels of sedation that it would have knocked us out, and yet she would still kick up a fuss when her diaper was changed. She was always such a strong little girl. They even had to paralyse her at one point during a seizure as it had gone on for 11 hours and they needed to stop her muscles form moving. They actually had to do it twice cause the first time it only lasted 3 minutes cause she pushed through it. Finally her last seizure on the 3rd of June the metabolic doctor decided to put her on pyrodoxine and test her urine. They sent the urine to Amsterdam. It came back positive. She had pyrodoxine dependant epilepsy. All that meant was that it wouldn't have matter how many meds they gave her she would always have seizures till she had pyrodoxine which is just vitamin B6. She had been on it in the NICU while she was there as a vitamin but when we went home they didn't' continue it as they didn't think she needed it. Now she is on 6 different seizure meds and she doesn't need them but they can't just stop them as they all have to be weaned off slowly. She is one of 100 people worldwide that have this so it is very rare which is why they didn't' think it was even a possibility. She is also the youngest baby to ever present with it as most are about 7-9 months. It is so easy to treat but so rare that it took them that long to figure it out. We finally got to come down on the sedation and she didn't seize at all. Once it was down they could finally take the tube out of her and let her be normal. Except she was still being fed through a tube in her nose but this time it went into her intestines. They had tried to give her something called poly cos to try and give her more calories but she didn't tolerate it at all and it made her vomit and have diarrhea. At least with the NJ in she didn't vomit any food up. This was good cause one time they tried to extubate her she aspirated and she collapsed both her lungs causing them to reintubate her till they got better. If she had been being fed into her stomach it could have been much worse as she then could have got pneumonia from aspirating food. They finally decided to let us go upstairs to the ward. At first we weren't okay with it cause that meant I had to stay with her 24/7. I would have to get a volunteer or a nurse to be with her if I just wanted to go to the bathroom. At least down in the ICU she was a 1-1 with a nurse so we never had to worry. It was nice to be able to pick her up though even though she was attached to lots of tubes still. When we went up there they put her meds through the NJ tube and blocked it. It was the middle of the night though. That meant that if they put a new one in then we would have to take her downstairs for an Xray to make sure ti was in the right spot. I just asked if they could make it NG which meant it would go to her stomach and that was that much closer to being able to feed her again. They finally decided to feed her into her stomach. They they had been feeding her a continuous feed and I wanted to get to normal feeding so we slowly got them to feed it over shorter and shorter periods till she was getting it all at once like a normal feed. Finally they let me give her a bottle. THey weren't letting me nurse cause they were adding stuff to the milk but at least it was closer to normal. Last Friday they removed her last IV which was a PICC line that went in her arm right to the heart so they didn't have to keep putting in IVs and they took out her NG tube so we had her completely unplugged. We were so happy that they finally let us go last Saturday. We spent a fortune on all her meds but it is worth it. We will slowly get her off most of them but as of right now she has 9 meds total that she has to take. She is doing great and would sleep through the night if we let her. Unfortunately we have to wake her at midnight for meds.
So after 3 MRIs, 15 EEGs, 54 IVs, over 500 heel pokes for blood, 3 Lumbar punctures that was 10 pokes, and being intubated for a total of 4 1/2 weeks all in 8 weeks of her life she is like a normal baby.
This was much shorter than it could have been and doesn't tell everything that we had to go through to get her home and normal. It was scary at some points as they told us she may not make it. It was expensive more than we ever thought it could have been and trying on our stress levels. I hope that no one ever has to go through this again with their own child. The good thing is that we were both strong and I think it brought us closer together through all of this. Tony had to work so he was only seeing her for about 3 hours a day and that was killing him. Then when we were upstairs he would only see both of us for 3 hours. At least I was with her and only missing him. He was missing both of us. But we are home now and like a normal family should be. I probably forgot lots that went on but I tried to keep this as short as I could.