Xmas 2008 from Chris Lee on Vimeo.
December 27, 2008
Xmas 2008 from Chris Lee on Vimeo.
December 22, 2008
Katie's First Birthday from Chris Lee on Vimeo.
We celebrated Katie's first birthday on Saturday. Her actual birthday was on Thursday, December 18th.
December 21, 2008
My Dad and stepmom came up with a Chinese name for Katie. It's a combination of my family name, my Chinese middle name, and Kristine's name. Apparently they added some extra strokes in to represent water, which means lots of money. Good thinking! :-)
December 15, 2008
December 12, 2008
December 10, 2008
The next day Chris and I were standing at the foot of Katie’s bed and I looked down at her foot and noticed that it was tapping repeatedly. She was under what is called a "bear hugger"...it's basically a series of clear plastic tubes/blanket that keep her warm by blowing warm air over her body. We told the nurse to come quickly. She yelled out the door to the doctor that Katie was seizing. Another very low point for us. It is so scary to watch your baby have a seizure. I had to restrain myself from running after the doctor to physically push him on the back to make him go faster, faster to get the meds. The seizure moved up her body and into her hands, the doctor finally came back with Ativan and it stopped within a few minutes. Katie ended up having this type of seizure "localized" about 3-4 times in the next 2 days.
One of the most discouraging things was that Chris, his sister (who was watching Katie while we were taking a break) and I were the only ones who spotted any seizures and alerted the doctors. I would brief each new nurse with what to look for (they started very subtly). The nurses usually sat about 5 feet away at a desk in the doorway where they didn't have a clear view of Katie...only the monitors, which didn't register her seizures (this was unusual). It was very frustrating. I ended up putting up a sign with instruction on the foot on her bed but it didn't help.
One moment that still sticks in my head took place right after we noticed her second seizure, almost immediately after they got the first one under control. Katie's nurse yelled out to her doctor (one of our favorite doctors...Dr. Dust) that she was seizing again and I saw the look on his face. He looked down and shook his head very slowly and sadly. I immediately knew that the seizures were clearly indicating something very BAD. I initially thought that they were perhaps only occurring from her fevers. Babies can have seizures if they run a high fever for any length of time.
I also have to say that during this time in the ICU, my Mom, Dad and Stepmom, Chris' sister and his Mom were an amazing help and strength for us. They sat with Katie, holding her hands and talking to her, when we ran home to get a quick shower or just stepped outside for breaks. We really couldn't have done this without them!
They did another EEG and head ultrasound shortly after the seizures. We didn’t hear back with the results as fast as we usually did…I had an AWFUL feeling. I asked the nurse to track down one of her doctor several times and then finally went to get him ourselves. Another one of her doctors came into the room with another new ICU doctor and without any warning just blurted out “she has severe bleeding in her brain, it is diffuse and it doesn’t look good”. I think Chris and I just looked down at the floor and I started to cry. We didn’t ask many questions, we just went and held Katie’s hands and kissed her face for a long time. Then we started making tearful calls to our families to let them know what was happening. I just kept saying that she’ll pull through and we’ll deal with whatever we have to for Katie. I think I repeated that statement about 100 times in the next 24 hours. My Dad came and talked to the doctor with Chris who told them that his diagnosis was highly “likely” but not confirmed until they did an MRI. We clung to that hope for about 24 hours. We just prayed that her brain would be protected from any long term serious damage.
The same night that they intervened with life support, they had told us that they wanted to take her down to get a MRI of her brain at the height of the infection. That was the point when we realized that the fevers, infection and even drugs could do damage to her brain. They ended up doing it that night, (the night after they gave us the ultrasound news) because she wasn’t stable enough for the trip to another floor until that time. It is complicated to do an MRI on a baby who is on life support. There can’t be any metal in the MRI machine (nothing magnetic), so they have to temporarily replace most of the equipment with special plastic versions. They also unhooked her ventilator and a respiratory tech pumped her oxygen by hand using a bag the whole time. About 3 hours. I was so worried that something would go wrong. In the end the MRI was completed and she made it back to her room. After the MRI I had another very frustrating exchange. One nurse told me that it went well and another told me the next day that she had a very hard time during the move to the MRI room and it was very tense for a while. One of them outright lied to me and I had a very hard time believing their "reports" from that point on. I understand that she, and others later on, were trying to somehow shield me but when I specifically asked for information I expected a truthful answer. Don’t get me wrong, we had some amazing, wonderful doctors and nurses that we loved and who cared for Katie like she was their own. However, sadly even in a leading children’s hospital there were nurses and doctors who are careless and incompetent. We saw some pretty scary mistakes and behavior while we were there…not only with Katie, but with other babies and children, after which we had someone with Katie at ALL times 24 hours a day. You don't want to know the details....you'd be terrified going the hospital.
So, we knew that after the MRI was read we would definitively know about the state of Katie’s brain and in much more detail. I didn’t sleep all night and Chris and I went back and forth between our “parents room” and Katie bedside. We waited on pins and needles until the next afternoon when a neurologist had a chance to read the MRI.
They came to get us. Chris and my Dad went to the conference room with several doctors to find what they had seen. I couldn’t go. My legs just wouldn’t work. When they had been gone for over 20 minutes I knew that it was bad news. Chris would have rushed back to put me out of my misery if it was good news.
My Dad came to get me and I sat down while Chris had to tell me that our baby had severe, widespread bleeding, damage and cell death to her brain. The Neurologist told him that she may never see, hear, walk, talk or do anything at all. He described a lifetime of severe disabilities if not a completely vegetative state.
We were totally destroyed. The Neurologist painted a horribly bleak future for Katie. He went on to tell us that we were in for many very difficult and stressful years as parents. They told us that we had to give up all of the dreams that we had for our baby..."just let them go" they said. They told us to be hopeful for things like...Katie being able to swallow...Katie knowing we existed...Katie being able to communicate basic needs. We walked around in a cloud of confusion and pain for the next day or so. No, no Katie was going to be fine, we thought that she would get some antibiotics and give us a scare, but come home healthy and happy! Our baby daughter...the one who was born so perfect just 3 weeks ago...you must be talking about another baby.
The same day that this news came, our favorite doctor came into Katie's room and told us that Katie had reached a point where he felt comfortable telling us that she was going to survive. Now, we knew that Katie was very, very sick and there was the risk of complications, however, no doctor or nurse ever said to us that she was in danger of dying. We knew in our hearts that it was possible, but because nothing was said, we tried to ignore these negative thoughts. We stared at him with our mouths hanging open and then started with the questions. He told us that over 50% of babies who contract GBS Meningitis die within 72 hours. This was a major wake up call for me and I realized just how lucky we were that Katie was still with us at all!
To be continued...
December 9, 2008
So, I’m at home gathering our stuff and hubby Chris is in the NICU with Katie. They have intubated her and placed an arterial line in her jugular, inserted a catheter and various other tubes, etc.
I head back to the hospital…I can’t remember who drove me there. Chris brought me to see Katie for the first time since all of the medical intervention. He had taken a photo of her showing the breathing tube, just to prepare me, but I couldn’t look at it. After I gowned up and walked back into her NICU room (she was still quarantined at this point) I saw her, lying so tiny in the big bed, with a million tubes, connectors and about 12 medicine pumps at her side.
I had a strange reaction…in a way I was glad that the doctors had finally DONE something and it somehow showed me that they were taking this very seriously. I weirdly blurted out “wow, she looks great” in a booming voice. I’m sure her nurse thought I’d lost it. I went on and on about how peaceful she looked and her colour was better, blah, blah, blah. I know that my brain was trying to process everything and this was the best I could do for idle chatter at the time.
Chris told me that he thought I was going to flip out when I saw her and I said something like “no, no she looks fantastic”. You’ll see how crazy this statement will when you see her photo at the end of this post. * Just a warning that it’s disturbing if you haven’t seen other very sick babies. She’s very puffy.
So, at this point they told us that it would take up to 72 hours to grow out anything from Katie’s lumbar puncture. 72 HOURS!!!?? In the meantime they had her on high doses of 2 broad spectrum antibiotics, hoping to slow down whatever was attacking her little body. She was also on a paralytic, lots of fluid to try to control her blood pressure which was very erratic, lots of morphine and other pain meds.
Usually in the case of an emergency I take control…memorizing meds, researching online, asking a million questions, etc. Maybe I’m a bit type A…Chris lovingly tells me I’m AAAA. :) But because it was my little girl I couldn’t do any of these things. Chris ended up taking control of the information for the first few days of her NICU stay. I would ask him questions and get updates from rounds, which Chris attended. I couldn’t stand hearing them talk about Katie like she was a number during rounds and I didn’t want all of the worst case scenarios that they were throwing around.
The first 2 days in the NICU were spent trying to stabilize her heart rate and blood pressure with meds. As a result of the massive amounts of fluid she was receiving and the fact that she was VERY ill, her body couldn’t process the fluid properly and it basically leaked out of her cells and into her tissue. That is why you see a lot of sick babies looking extremely puffy and swollen. Once this happened the next hurdle was to try to get the fluid “off” with diuretics, which wasn’t going well. Her blood pressure would drop then sky rocket. On the second day they started doing the first of many EEG’s as well as ultrasounds of her head/brain. Obviously the doctors knew, or strongly suspected at this point, that it was Meningitis but wouldn’t tell us until the cultures grew out. (I later found out that when spinal fluid is pulled from a person with Meningitis it is very cloudy, so they would have suspected during the first night)
The hospital had a “parents room” right outside the NICU for parents of gravely ill children to stay overnight. It had a couple of pull-out chairs and a tv. We ended up sleeping in this room in shifts for 10 days. THIS was an amazing help as I couldn’t imagine not being able to stay close to her once I came back to the hospital.
At about the 48 hour mark they officially told us that Katie had late-onset GBS Meningitis. This form of Meningitis is very rare...it needs two things to happen in order for it to attack the body… exposure to Group B Strep and a momentary weakening in the respiratory or digestive system. GBS is carried harmlessly by 30 – 40% of the population. The bacteria must first get into your body and then it has to cross through your respiratory or digestive system “wall” to start colonizing in spinal fluid and eventually into your brain. This is the same GBS that all pregnant women are tested for (here in Canada).
We were asked to talk with a team from “infectious diseases” and they were surprised to hear that I was negative. Then they assumed it was a false negative and that Katie probably picked it up during child birth. When they found out that Katie was a “dry” (my water didn’t break) c-section they again were surprised. We later found out that the chances of Katie picking up GBS from a source other than me while I was pregnant was about 1 in 10,000 or less. It was a total fluke, bad luck and a terrible accident. In the end they suspect that she was exposed at the hospital shortly after she was born. Likely by cross-contamination through a nurse via another mother who was positive. Then 18 days later, for some reason her body let the bacteria "through" and after this happens it becomes extremely aggressive. Chris really did save her life that night by taking her tempterature "just to be safe". She wouldn't have lived through the night.
I can’t even look at the hospital where she was born when I drive by it now. It used to be a place that was full of amazing memories of her birth. When I see it now I just think that it’s an extremely dangerous place for the many babies that I know are born there every day and every night.
Once I convince Chris to have another baby (I’m working on it) we will be going to another hospital and so help me NO ONE will be touching our child without pouring a bottle of antiseptic on their hand in front of me. But I'm getting sidetracked again….sorry.
After telling us that it was Meningitis they described to us what it was doing to her body. The antibiotics usually take care of the bacteria fairly quickly (within days), but once the bacteria dies it turns into a lethal toxin and continues to travel to the brain. The toxin causes bleeding in the brain, which in turn blocks oxygen from reaching brain cells and if deprived for any length of time, brain cells start to die and never re-grow. The overall trauma that her little body was going through could also produce strokes, multiple organ failure, heart failure, collapsed lungs, blindness, deafness, lost limbs…the list went on.
No one knew at that time, but I had spent many hours reading and re-reading a long newspaper article that was posted in the hall outside of the NICU about a little girl who, when she was Katie’s age, had a less severe form of Meningitis and made it out alive with “only hearing loss” and “physical disabilities”. They called this a MIRACLE. ONLY hearing loss, ONLY physical disabilities??? !!! I knew what Katie was facing as soon as I heard Meningitis and then it only got worse once I found out it was GBS. I told everyone NOT to read the article (we had to walk by it about 40 times a day)…that it was too depressing and that it wouldn’t help them. I SO wished I had never seen it. Sometimes a little ignorance IS bliss.
Our little munchin...all puffy and very sick. This was not even close to her "puffiest" day in the photo.
To be continued...
December 8, 2008
December 1, 2008
So now we’re in the NICU... Katie is fighting for every breath and her nurse (Suzanne, who ended up being our favorite and most talented nurse) starts administering drugs to try to bring down her heart rate. At this point it’s still above 200 bpm and everyone is getting VERY concerned about that.
Then I made a HUGE mistake. As I mentioned earlier, I was pretty grey from the c-section still and the room started to spin. Chris, totally meaning the best for me, suggested that I go home to try and rest a bit. At this point, we’re still thinking that it’s just a matter of the doctors finding the virus and treating her with some antibiotics. So my mom came and picked me up and brought me home. I arrived home and crawled into bed. It’s not like I slept, I don’t know what I was thinking. I just cried and worried and called every 5 minutes.
I had called my Dad and my stepmom from the ER and told them what was happening to Katie. They live about 3 hours away and immediately jumped in their car and drove to the hospital. I wasn’t there when they arrived, but they saw Katie and Chris and then came to see me at home. By the time they got here I knew that this was the worst decision ever and wanted to head back to be with Katie. At the same time I was SO, SO afraid that she was going to die that I couldn’t even make my feet walk towards the door. I was also very worried about Chris being there by himself. I asked Jo (stepmom extraordinaire) if she would go and see if Chris was okay and stay with him. She immediately went over…it was 2:00am at this point. I started throwing some clothes into a bag for us and the phone rang.
It was Chris calling to say that the doctors were worried that Katie would tire out from her effort to breath and wanted to do several things. This is the point that we realized that she is a little fighter…and very determined to stay here. They wanted to intubate Katie, put in a feeding tube, catheter and start her on high doses of pain medication and a paralytic. The decision was left to us. We knew that parenting would require difficult decisions along the way, NEVER did we think we would be deciding whether to put our daughter onto life support or risk her breathing. Neither of us were very coherent and could barely speak. I know I keep mentioning the “shock”, but really it was almost paralyzing. We decided to give the go ahead with all of the tubes, wires and awful equipment that would keep our baby alive. Looking back, THANK GOD, this equipment exists… it helped save Katie’s life. Chris told me that they needed about 2-3 hours with Katie to do everything they needed to do. The lumbar puncture was also going to be done at this time. We were not allowed to be in the room until everything was complete. She had to be alone. :(
I’m still fighting to get myself up and back to the hospital. I will forever feel guilty for not being with her every second.
My BFF Judy called to see what was happening. I gave her updates and she told me what I needed to hear…”Kristine, get back to the hospital. You have to be there, Katie needs you. You would never forgive yourself if something was to happen and you weren’t by her side”. Yup, that snapped me out of the haze and got me moving. Thanks Jude.
Chris calls again and tells me that it’s all done and he’s back with Katie in her room. He said that although there is now a massive amount of equipment and tubes, she looks so much more comfortable and no longer has to fight for every breath.
It’s now approaching morning (Katie has been in the hospital for almost 24 hours) and I asked my Dad to drive me back with our things, preparing never to leave as long as Katie was there.
To be continued…
I’m a slow blogger, huh. I’m writing in between taking care of Katie and trying to eat 3 meals a day…something that I have not yet mastered since becoming a mom.