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Showing posts with the label Neonatal Hemochromatosis

Right where I am - 5 years, 365 days

Tomorrow would have been Tripp's 6th birthday. I take photos of the kids for their birthday, but I have no new ones of him. He is my forever baby. . . . It is actually funny. For years I pictured him as a baby, but lately I picture him as a kindergartener. Not sure how or when that changed in my mind. I wish I knew more about how heaven work and what he was doing right now. I think of Tripp more times a day than can be counted. I think of him without even being aware that I am thinking of him. There would be no possible way to count even if I tried. How many times a day do you think about your kids? Its the same thing with Tripp. Although, I don't have to think about getting him to hockey or having a snack ready for him after school, his being is woven into the fabric of my life. I think about him not being here all the time. Sometimes it comes from sadness and sometimes it is born of curiosity. What would our lives be like if he were here? What kind of boy would he be? How...

Introducing Lawson Marie

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Tuesday, February 10 I had been feeling crappy the past couple of days. Nothing that new. I feel crappy pregnant - particularly when I am REALLY pregnant. In the morning I took Calder and his cousin, Pace, to CJ's for a play and dropped them both off at their respective daycares for lunch so I could have a nap. I woke up from my nap at around 3 pm with a jolt. I was immediately confident my water broke. There wasn't a ton of fluid (like when my water broke with Calder), but I was pretty sure I was going into labour. I called Hugh at work. I wasn't in a hurry to get to the hospital. The contractions I was having weren't any stronger or any more frequent than my Braxton Hicks, but we needed to get some things in order and Hugh's hands and muscle would come in handy. I called my sister to come out and look after the boys until my mom could arrive from Tisdale. Hugh loaded the car, shovelled the driveway and we were on our way to the hospital around 5 pm. I still wa...

Last Day

Today is my last day of work. . . When I was pregnant with Boone I lasted until Christmas, so making it to the end of the semester feels like an accomplishment. People keep asking me how I feel, and truthfully, I feel crappy. My body seriously hurts. Between Braxton Hicks 30 - 40 times a day, back pain and SERIOUS pelvic pain, most days I am barely moving (and certainly not setting any speed records doing it). I actually might feel physically worse at this point in my pregnancy compared to where I was with Boone, but my stress level has not been the same. I did a lot of worrying about Boone's health during my pregnancy. I lost sleep. I shed tears. I'm not saying I haven't worried about this babe, but only a small fraction of the amount. In fact, a couple of weeks ago I had a dream this baby had NH and was really sick in the hospital. When I woke up I told Hugh about the nightmare, stating, "I had the worst dream. Our baby was sick". Hugh responded, "What we...

Good-Bye CTC

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Today is it. My last IVIG appointment. I am 35 weeks (if you can believe it) and after this I will be spending my Thursdays elsewhere. Next week I will be with my period 1s as they write their final exam and after that - who knows. January 30 is my last day of work so I have an open schedule (that I am looking forward to filling). At my 33 week IVIG treatment I said goodbye to one of the staff who was going on holidays and wouldn't return before today. She is a warm, loving soul and when she gave me a hug I felt myself tear up. The women who work at CTC have been such a part of my story. I hope never to be back getting poked by them, but I sure hope I see them again.  As much as I have had feelings of sadness about saying goodbye, I almost felt a bit giddy today driving to the hospital. I am almost done. Pregnancy doesn't suit me and I am on my way out. To celebrate my last appointment my sister, Jes, and sister-in-law, Brittany, are coming by to have lunch with me. I order...

A pregnancy post

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Here I am at 28 weeks. I am currently 30 weeks. I have been WAITING to get to 30. It feels like 30 is so much closer to the end than 29! I will also be excited to get to January, which is the next milestone I will be counting down. I don't want this baby coming early for obvious reasons, but I especially want it to wait until 2015 to make it's appearance. I know I had the big rant about my weight the last time I posted. Well, I had an appointment on Friday and I basically didn't gain any weight the last month. Don't panic. I wasn't dieting. I just stopped eating before bed. The main reason for this was my acid reflux. It got so bad that I actually had my doctor prescribe me some medication for it, because I was struggling so badly to control it. I have acid reflux when I am not pregnant and it shows itself mainly by giving me a very sore throat and scratch voice. I will have an ultrasound at the start of January. This would be considered routine for my ...

The numbers

Calder's Due Date: March 31 Calder's Birth Date: March 8 Tripp's Due Date: March 21 Tripp's Birth Date: February 18 Boone's Due Date: March 5 Boone's Birth Date: March 14 Baby #4 Due Date: February 23 Baby #4 Birth Date: ? But you may want to ask Calder. . . He was 4 hours off predicting Boone's! The first thing you will notice is the timeline. Hugh and I both believe that kids who have early birthdays have an advantage. Malcolm Gladwell talks about the advantage when it comes to playing in the NHL, but there is also something to be said for being one of the oldest and most mature in your grade. Hugh and I made a purposeful decision to start trying to get pregnant when we knew the date would give us a January baby. It is normal to take anywhere from 1 month to a year to conceive. We couldn't predict we would have a baby in the first three months and would have been happy with a baby born during any of the months. We wanted a baby more than an...

Boone's blood work

Just wanted to let everyone know Boone's last blood work results came back normal. We are thrilled :-) We are now on to everyday medical things like clearing up diaper rashes! Hooray!

Boone's Birth Story

On the evening of Tuesday, March 12, I thought I was going into labour. My braxton hicks were much stronger than they usually were and I had a few other "symptoms" that I'd rather not share ;-) I wanted desperately to get things going so I did everything I could to stay active around our house. After an hour of house work the contractions faded.  I was annoyed to say the least! On Wednesday evening, March 13, when my braxton hicks got stronger and I got the same list of other "symptoms" I didn't get my hopes up. Instead, I parked my butt on the couch with Hugh and watched a couple of episodes of "Fringe" (Mine and Hugh's latest Netflicks obsession). My runny nose, sore body, and frequent trips to the bathroom had kept me (and Hugh) up most of Tuesday night. Not wanting to disrupt Hugh's sleep on Wednesday night I decided to sleep in the basement. As I laid in bed I realized that the Braxton Hicks were getting stronger. I started timing th...

Update - Boone's Tests

We were back at the hospital today to get the rest of Boone's blood work done. One hour, 6 attempts, and a call to the NICU resulted in the bloodwork being taken. Since it took so long to get the blood, the neonatal hematologist was worried the results might not be in today. She is going to call us by Friday to confirm that things are good :-) She gave Boone a newborn check-up and pronounced him completely perfect! Just exactly what we wanted to hear!

Boone is home

Hugh drove Boone and I home on Friday! There were 3 blood tests that needed to be done to test for Neonatal Hemochromatosis. They tried to do the blood work twice on Thursday, but didn't get all the results they needed, so they tried again on Friday morning. They had to poke Boone at least 15 times to get enough blood for these tests (all 4 limbs and multiple places in his head). His blood is quite thick and as the nurses said, "He doesn't like to give it up." In the end we only got results from 2 of the 3 tests, because his blood in the vials kept clotting making it unusable. Both test results we did get had levels that were slightly above "normal", but these levels were no where close to NH levels. For example, Ferritin levels in newborns are around 70, Boone's level was 137. NH levels are above 800. Boone also had an ultrasound on his liver Friday afternoon that was normal (this wasn't shocking, because we had such positive results on the bloo...

4 hours off

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Calder missed nailing our baby's arrival by 4 hours. Boone James Hamilton was born at 3:59 this morning. Boone is doing well. We got back some positive test results today and will hopefully get the remaining few tomorrow. He gets to spend the night with us and at this point that is all we can ask!

More pregnancy talk

I usually get around 350 page views a day on my blog. The last week and a bit I have been getting more than 550. My brother's fiance, Brittany, was telling me about how everyone she knows has been asking her, "Any baby news, yet?" I shared with her the increase in traffic on my blog. I had been speculating that people are coming back more frequently to see if we've had the baby yet! Brittany confirmed this for me, saying she has been even checking it multiple times a day to see if there is any news. I had a good laugh about this! Brittany (and other members of my family, I'm sure) may be inflating the number of hits on my blog and they are the ones that are going to be informed the moment we even head to the hospital! I feel like the pregnancy talk is getting old. But that's all I think about and apparently, I'm not the only one :-) So here's some more. . . I met with my ObGyn's partner on Friday, Dr. M2. My ObGyn is on holidays and won't...

39 Weeks

Who thought I would get to 39 weeks? Seriously? Did anyone? I certainly didn't and although I am still a week until my due date, I am ready. So ready, in fact, I was basically depressed yesterday that I hadn't gone into labour yet! I have been feeling 39 weeks pregnant. Full. Full. And more full. I have been having an increased number of Braxton Hicks - which make me feel gross. I told Hugh last week that I was getting so big I had started waddling. He replied as sweetly as possible, "Honey, you have been waddling for a while now." Hahahahaha! The baby continues to move lots, which makes me feel good, but I can't help but think that it has been 4 weeks since I had my last IVIG treatment. I wonder what my antibodies are doing to the baby. I want the baby out :-) • • • I am part of an online group of parents who have lost children to Neonatal Hemochromatosis. There is a mom who is getting very close to needing her first IVIG treatment and her insuran...

Baby Update

At our 36 week ultrasound last week I got some news I wasn't prepared for. The baby had slipped from the 85th percentile to the 35th. I was scared. Dr. M assured me there wasn't anything to worry about. She said I wasn't going to have a big baby and there was good movement and lots of fluid surrounding it. At my 32 week ultrasound Dr. M estimated the baby's weight at 6 lbs 1 oz. At this appointment Dr. M estimated the baby's weight at 6 lbs 4 oz. I was worried. At our 37 week ultrasound this week, I got news I wasn't expecting. The baby was back to measuring big! Dr. Martel said that a cause of this discrepency could simply be that the way the baby is sitting makes it hard for her to get accurate measurements. This week the baby's head had slipped so low that the best she could do was estimate the size. After taking a thorough look around, Dr. Martel told me that her measurements were saying the baby was 7 lbs 6 oz, but she felt that the baby probably we...

Return to NICU

We had a meeting on Monday with the doctor that will be looking after our baby. It is the same doctor that looked after Tripp. He knows our story. Maybe not shocking, but when we first sat down to meet with him, he didn't know who we were. It wasn't until he opened our chart and read for a few seconds that he said, "Are you the same Hamiltons?" that he realized that we were Tripp's parents. After that he poured out detail after detail about Tripp. It made us feel good. Following Tripp's death we had some grievances with the hospital, but none of them had anything to do with the care Tripp received. Interestingly enough, the doctor remembered and addressed each of the concerns we had had and even gave some examples of how they have fixed things since. He also showed frustration with a few of the things we were frustrated with. It really validated how we felt when dealing with this stuff the year after Tripp died. It also made us happy to think that we may have ...

Having a baby after Loss

I have spent the last week with a "live in this moment" mentality. I feel the baby kick and I stop and feel. I have been taking the time to focus on my baby knowing that it won't be long before it is no longer safely cocooned in my belly. I see my rounded figure in the mirror and I linger a little longer trying to etch it into my memory. I don't know if this is our last pregnancy, but it might be. I think regardless I would be feeling this sense of reflection. I have always gotten a sad fog wash over me in times of change. Whether it was the end of high school or university or when we bought our house. Even when the change is completely exciting, I am sad about the end of the previous era. I have also been thinking a bit more about the sex of this baby. We didn't find out, because Hugh and I loved the surprise we had with the first two.  From the moment Tripp died, I felt that if we decided to have a 3rd I would want it to be a boy. For 5 days I had two boys a...

The End

Today is the end of my IVIG treatments. Part of me can't believe it is here and the other part thinks it took an eternity. These treatments started out as a bit of a novelty. A day away from work. Six hours to sleep, read, knit, and relax. It wasn't quite a spa day, but parts of it were really great. As the weeks wore on it got harder to leave my classroom ( I truly believed that my students learned best when I was there. Not to take ANYTHING away from the people who covered my classes - they were fabulous - kids just thrive with a routine and consistency), c hecking Facebook statuses all day started getting boring, and the 8 am start time got exhausting. These last few weeks have been especially hard. I am sure part of that is due to the end being so near, but it has also been frightfully cold and leaving the house at all has become a chore. This experience has given me a greater appreciation for anybody who goes in on a regular basis for a medical treatment (like thos...

Packing my bags

Hugh has been telling me to "Pack my suitcase" for over a month. No, he isn't kicking his pregnant wife to the curb! He knows me and doesn't want to be involved in the panic that will ensure in our house if I go into labour without a packed bag. I have been avoiding doing anything to get ready for this baby. I haven't bought a single thing. I haven't pulled out any baby items, cloth diapers, monitors, bedding or even a single sleeper. I don't want to be in a position to have to return items to a store, or even pack away a tub of clothing if this baby doesn't come home. I didn't even want to pack a suitcase and it wasn't until last week that I realized that one of the very few things I can actually bank on is giving birth to this baby. I don't know what the process will look like, but this babe is only getting bigger and it can't stay all cosy in my belly forever. So although, I refuse to make plans for bringing a baby home, I can ...

Baby #3 Update

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My skin colour matches our walls in this picture. That is not good! I will be 34 weeks on Wednesday!   I am really trying to focus on enjoying each moment of this pregnancy. I am starting to get a bit anxious to have this baby - I want to know FOR SURE it is healthy, but I also know that these last moments with my baby safely stowed away in my belly are really special too. On Friday I had a doctor's appointment. I have 2 more IVIG appointments left (they finish at 35 weeks) and I asked Dr. M why they don't go right up to the moment we have the baby. She said that there is some indication that the treatment provides no benefit after 35 weeks and that there is a school of thought that it is better for the baby to have all of the IVIG out of my system when I go into labour. I am definitely NOT sad I only have 2 treatments left - Just scared about what that means for my baby (I don't want my stupid antibodies attacking). I had an ultrasound on Friday as well. Dr. M said...

Baby #3 Update

I don't think I posted about our ultrasound on the 24th - Everything looked great. The baby is measuring above average and my placenta looks great as well. Calder was very pumped to see the baby. The tech was fabulous with Calder giving him a little tour after she had done her thing. She got a great view of the baby's profile and Calder is quick to imitate the baby opening and closing it's mouth if you ask him what he saw! I am officially 32 weeks! Hooray! Next goal is 35 weeks. I am not sure why this is the goal - possibly because Tripp was born at 35 weeks - but maybe also to do with the fact that my last IVIG treatment is at 35 weeks. I had an appointment with my OBG yesterday. My fundal height  measured 34 cm. Fundal height should be within 2 cm of the number of weeks pregnant you are. The fact that I measured over the number of weeks goes along perfectly with the ultrasound from two weeks prior (the baby was measuring above average in size there as well). My next ...