Monday was a full day. From the moment that I woke up I felt anxious and irritable. This may have been, at least in part, the reason that Ella just would not feed, despite the fact that she hadn’t eaten since 9:30pm the night before. I rushed through breakfast and tried to quickly compose myself into a “confident, put together, emotionally stable mother”. Poor Jakob, probably didn’t know what hit him – why were we leaving the house so early and why was mommy so grumpy? Ben’s parents arrived at just before 8am to load up Jakob in their car and by 8:15 we were all on the road.

My heart of was full of uncertainty and yet there was a peace that we had not known a week ago. This was a reality and now down to business.

Our first appointment was with the Geneticist that we had originally met with. Ben’s parents joined us in the exam room while the doctor explained the science of Down Syndrome. Ella’s condition was not because of genetic history or anything that happened in utero but rather egg or sperm had originally had 2 copies of chromosome 21…in other words pure…luck? A one in 1034 chance to be exact (for a woman my age). The meeting was shorter than expected but I think it covered what we wanted to know.

From there we went straight to the cardiology department just down the hall. Aside from the looming possibility of a major heart defect, requiring surgery, it was an ultrasound like any other – fuzzy, distorted pictures of my little girl’s heart. It was beating… that’s mostly what concerned me. Next was and electrocardiogram for which they stuck about 15 stickers on Ellas torso, all attached to little wires. This would allow them to listen to her heart from all angles. It looked like something out of a science fiction movie.

At last the Cardiologist came in to discuss the findings. He awkwardly discussed the pictures with the technician in medical mumbo jumbo while we patiently…or not so patiently waited. He finally explained to us that there was nothing to worry about. The hole in the heart which allows blood to bypass the lungs in utero normally closes up after birth however Ella’s had not. This was quite common and would close up eventually – he seemed quite unconcerned and would leave it up to our family doctor as to whether it should be followed up on. Good news.

Our entourage took a break for lunch and then it was on to a meeting with the Down Syndrome Clinic. By this time our minds and spirits were quite fatigued and Jakob was more than ready for a nap.  We thank God for a supportive family and while we prepared ourselves to take in another large dose of information overload, Ben’s aunt took Jakob to the park. The nurse led us to the family center where we crammed into a small consultation room. She informed us of all the resources available. This would include a medical team made up of physiotherapists, occupational therapists, speech therapists, psychologists, nurses and doctors. She let us know about the Calgary based Down Syndrome society called “Ups and Downs” and of course the Canadian Down Syndrome society all of which provide, information, resources and support to those with Down Syndrome and their families.

And although this session was very informative I came out of it feeling that it was a little too post-modern for me. For example when asked about what type of stimulation we should be giving Ella the response was along the lines of “well it depends on the child, some children like to be held and some just get overwhelmed…” I’m a list person…JUST GIVE ME A LIST!

But perhaps this is just one more lesson that Ella will bring to my life. Down Syndrome is so diverse and each child reveals their abilities and disabilities in their own time. We will be forced to face Ella’s condition, as well as discover her gifts and talents on a daily basis. And there are many things we will not be able to know until the time comes. There is no plan, no map, no timeline or list and for those who know me, know that this is NOT how I work.

Ella is an amazing blessing and I am excited to see who she becomes, the potential that she can achieve and the impact that she will have on those around her. Here are some things that I know.

-          I know that she will look different than other children…and I know she will be beautiful.

-          I know that she will be intellectually challenged…and I know that she will have her own set of gifts and talents

-          I know that some days I will look at her and see Down Syndrome…and I know that some days I will look at her and see me.

-          I know that sometimes I will be embarrassed at her lack of inhibition…and I know that this will bless many people.

-          I know that this is going to be a challenging journey…and I know that God will carry us both through when we lose the strength to walk.

-          I know that she is my child and that I love her…and I know that she is God’s child and he loves her more than I ever could.

 

“Cast your cares on the Lord and he will sustain you.” Psalm 55:22

On June 8^th at 11:29pm we welcomed Ella Freda Ewert into our family. Our beautiful baby girl came with some resistance but with her chin up. I feel like this may be a theme that will follow her through her life – swimming upstream but with a smile on her face. You see, with the joy of holding the newest Ewert came the lingering concern that she showed signs of Down’s Syndrome. As a mother I could only tell you that the eyes were the tip off to my intuition. When I mentioned this to the nurse, she tried to reassure me with the fact that Down’s syndrome children often had a line straight across their palms. Much to her surprise, when she opened Ella’s palm one more sign was revealed.  The next couple of days were filled with a mosaic of elation, anxiety, mourning and everything in between.  With a little extra time, Ella learned to nurse however still developed jaundice with a bilirubin level of over 300 micromoles. (290 is critical). So she spent a couple days in her little tanning bed. As the hours passed we were encouraged by Ella’s progress in nursing and activity.

On day three,  Ella was doing well overall however the doctor admitted that he too, had independently thought there may be a possibility that Ella may have signs of Down’s and that we should go to a specialist to have her tested. When you have these doubts, all you want is for somebody to tell you that you are paranoid and have nothing to worry about. My heart broke as I heard him talk about the genetics specialist, trips to children’s hospital and tests for heart abnormalities. My perfect, beautiful girl…what would this mean?

To add insult to injury, Ella’s bili levels had gone up even higher and with my bags half packed they told me we would have to stay another night. Finally on Friday, 5 days later they let us go home. I welcomed the chaos of 3 grandparents, my dear Soren, and my family… all at home at last.

The Alberta Children’s hospital was prompt in making an appointment for us to see the genetics doctor and on Wednesday June 17^th, we had our first outing.  The ride in was stressful to say the least. The unknown lingering beyond the surprisingly welcoming doors of the hospital was paralyzing. For a healthy child like Jakob, it was paradise but for the mother and newborn whose future was on the line, it was the last place I wanted to be.

The doctor welcomed us into an exam room and began to get a bit of our family medical history – no history of genetic disorders, no toxic exposure, overall, healthy parents with no apparent signs of disease. So in this case, it would random and a one in 900 chance – it almost makes me want to play the lottery. The doctor, in her gentle way, said that usually, after physically examining  a child she can say 90% yes or 90% no. In our case, she could not commit either way. Ella had some key signs like folded over ears, a line straight across her palm and of course her eyes. She did however have better tone than most babies with down’s, she was quite alert and of course there is no history of genetic disorders in our family. As a result of her uncertainty she made a requisition for a chromosome count. People with Down’s have one extra chromosome, so instead of 46, they have 47.

We were able to get into the lab right away and they took some of little Ella’s blood…she didn’t even cry…but mommy did.

After what seemed like eternity, on June 23^rd we received a call from the Genetics specialist confirming that Ella had the extra chromosome.

This is just the short version of our life the past two weeks. What the future holds, nobody knows. We just keep going as we would under normal circumstances, continuing give Ella as much love as we have and introducing her to the world. We know very little about Down’s syndrome right now, except that the symptoms can vary widely. Hopefully on Monday we will meet again with the Genetics specialist and make arrangements to have an ultrasound of Ella’s heart and other tests specific to children with Down’s.

Please pray for Ella – that there would be little physical and mental abnormalities, and that the Lord will protect her in these early days. And please pray for us as parents – that we would process this in a healthy way and know how to best raise Ella and Jakob likewise.

After the hussle and bussle of all that has gone on this past season we decided to take a mini vacation to BC. It was wonderful and we were able to see lots of friends, family and sights. Even growing up in BC it has always been one of my favorite places with the beautiful scenery, rich culture and great people. We were able to spend Easter with the Johnson family which is always fun…there are never less than 25 people at the table, and Jakob was able to have some quality time with Grandparents. We did all of my favorite things, which include going to granville island, strolling the white rock pier and eating…of course. And the pictures explain the rest.

Well, sorry to say, that converting to a toddler bed did little except give a real good shiner to Jakob’s collection, when he jumped right off his bed. He loves jumping on his bed and does not love going to sleep. Here is the problem. Me, of course. I like rocking him to sleep and singing him songs. I have to say, I NEVER used to do this. He has always been go, go go and never liked to cuddle and bed time, as I mentioned before was- he was in bed and asleep shortly thereafter. In the last month, things have changed, why? I wish I could tell you. BUT NOW, there is this cuddly Jakob that comes out after he has realized that we aren’t leaving his room….(well at least he is not) until the morning. And he comes and sits on my lap (sorta-the belly is getting in the way) and I sing to him until he falls into the almost sleep and then put him in his bed. I just can’t stand to hear him cry. I know he is not hurt and not injured and will not be emotionally scared for eternity if I let him cry it out, but I JUST DON’T LIKE DOING IT- I also wonder how productive it actually is, because it seems to me, that it would just get him worked up rather than settled down. Tonight I let him cry long, oh I don’t know, about 20 minutes and I just couldn’t do it. This inconsistancy probably doesn’t help either. But what do I do. This fear lingers- in that I may or may not be able to sit and cuddle with him for a half hour when baby comes. So do I do it all the more now, for that very reason, or do I establish the iron fist and suck it up?

Yesterday marked the opening night for the Art’s Academy’s spring production of Charlotte’s Web. Jakob and I were able to catch a bit of the dress rehearsal and it looked great. Needless to say, Ben is very busy with that and we are like ships passing in the night as he takes care of Jakob until 3pm and then doesn’t get home until I am long asleep. Its exciting, however and Ben is loving his job at the Arts Academy and we feel great joy and peace in the fact that Ben has one full time job in the arts. (This was the goal- and not all that realistic might I add, anyone who knows a musician knows the struggles of industry.) He also teaches guitar and gets opportunities to perform here and there, so doesn’t loose that aspect of the arts.

I tried to upload a video that I took of Jakob today, however I am not technologically savvy enough to know how to convert the file into something acceptable, so I really do urge those on facebook to check it out. PRICELESS. For the rest, some pics of sunday pancakes and my little book worm. As cute as he is however, we have been having sleeping issues. This is new for Jakob. He has always been such a great sleeper. He could go to sleep on his own in his crib from day one and slept through the night at two months, however lately, he has been waking up at night, unconsolable, unless he is brought into mommy’s bed. This has taken a toll of mommy of course and I am feeling pretty exhausted, as I don’t really sleep when he is in my bed. So some friends suggested trying the toddler bed. The child then feels independant and apparently this has made a great difference in their toddler’s sleeping habits. I think we will give it a try.

As for me, not much is new on the homefront, which is a good thing. As my doctor says, “you aren’t even anemic” Apparently gestational diabetes and anemia are very common here among pregnant women. So we wait, we look forward to going out to BC for Easter and then of course the long awaited arrival of the very active being moving around in my belly as we speak.

Well, as always we had a busy week. It seems to be the trend these days. Last Saturday, being Valentine’s Day, Ben played at the Arts Academy Chocolate Dessert Evening. This was a great experience for him as he had the opportunity to play some jazz with a few other guys. Although, two of them (one being Ben) were Jazz virgins, they were fantastic and I think Gershwin would have been proud. Overall the evening was a success and I think everyone enjoyed themselves.

Alberta has this lovely day call FAMILY DAY in February and that fell on Monday. I think all provinces should adopt a stat between new years and easter, otherwise the stretch is just too long. As a family, we were able to regroup and relax, as I resisted the urge to find another painting project.

On tuesday, we went to the Calgary Flames vs. Vancouver game with our friends from vancouver/calgary. Yes, that is right, I witnessed the canucks win. It was ill-deserved and was only because of luongo (obviously) but I am proud to say I was there. Ben, the little trader, in between his “go oilers!” chants, cheered for the flames (BOOOOO!) until the canucks won, at which time he tried to play it off as if he were cheering for luongo the whole time. We had a great time, and boy was I glad to have the next day off.

The reason for my day off, in part was for our ultrasound of the baby. You know how it is – technicians can’t really tell you much but everything looked like it was there…no we don’t know what it is. An educated eye, I am sure could see either ovaries or an extra appendage, but we are that good. So that brings me to 25 weeks.

Here are some pics of the week for your enjoyment.

Last weekend I was feeling rather unsatisfied with the state of our bedroom. I am a comfort person and like my surroundings to be as such. I had big plans for our bedroom when we first moved out here….like a new bedroom suite, but as in most cases the money ran out before the ideas. So at the end of my rope, I took a chance in hoping a coat of paint and some new accessories would do the trick. This whole project, somewhat blindsided Ben….it didn’t help that I decided we may as well do the ensuite at the same time. But one weekend and $200 later. Here is what we came up with, Soren took no time to adjust and there is an extra picture just for fun.

This past weekend we took a trip into Calgary and went to Prince’s Island Park. This is one of our favorite spots, right on the edge of down town along the river. And on the way back from our walk we stopped at the Old Spaghetti factory…Jakob’s favorite! It was a beautiful day.

Well, I let my boss know today that I will only be working until Easter. Phew! I feel a bit like a jerk because I am taking a full 8 weeks before my due date but this time round, I am not about to try and be a hero. Today was a good day to do it because I was quite annoyed with them (them being my two bosses-I work both cash and lending, so therefore get to answer to two managers, cover two schedules and attempt to be two people at the same time.) I would like to think that things at work are give-and-take when it comes to scheduling so when they asked me to work late a few (more than a few) nights in February and March I said “no problem”. I only said “no” to one out of the 9 days they had requested. However I did ask for ONE, count em, ONE day off and they would not give it to me. I said, “well if not this day how about this day?” No. I am beside myself. I am trying to set boundaries however, when the situation unfolds as such, what is one to do?

I am off to Red Deer tomorrow for some training which will be a nice break from the Branch. Jakob learned “sous-sous” (I thought this word would come sooner as he is a little obsessed with it) and seems to be a little less whiny (cross our fingers) so it may in part have been from being sick, or the fact that I don’t think he is connecting with his babysitter these days (Our “regular” is still away, so her daughter is doing this last week until she gets back)

Well, I know that I said that I would commit to posting, however, everytime I sit down to write I cannot think of anything which warrants a new post. And although some use their blogs to voice their opinions/findings/rants, I don’t feel that this is the purpose of this site. Which is well enough, and I may in the future however for now, we will stick primarily updates on the Ewert family.

So what’s new? My mom left on Wednesday, although it feels like a month ago. This past week has flown by, probably because I was back to work 5 days a week. So Ben, Jakob, Soren and I have the house to ourselves again, which is a welcomed change. No offense. We loved having everyone come and visit and welcome anyone who is willing to make the trek out here, however there is something to be said for getting your ducks back in a row. We spent the morning cleaning, doing laundry and catching up on some much needed sleep. In the afternoon, we went to visit Great Grandma Marion, whom we haven’t seen since Christmas. It is nice having her back in Three hills. Then Grammy came over for tea as Grandpy is at Missions Fest in Regina.

Jakob’s new phrase is okey dokey, most of the time he just gets the okey out but it sure is cute regardless. He has entered into a really whiny stage. I am unsure as to whether this is because we are back to the 5 day work week so our time is limited, or if it is because he senses change coming, or if it is simply because he is one and half and testing his boundaries and wants to see how far collapsing on the floor like a rag doll will get him. I can’t imagine it is an easy life – knowing what you want but being unable to communicate it. So all he says is “up!” and then tries to point to whatever it is that he wants.

Beginning in February Ben will be working full time at the Arts Academy. He is very excited about this and has enjoyed his job there thus far. So what does he do? Well that is a good question. Unfortunately, at times it is not as Artistically enabling as one might think but I am sure he will be able to flourish in this way eventually. Right now his time is filled with a lot of grant applications, newspaper publications, general PR for the upcoming Spring Musical, Valentines Dessert fundraiser and keeping track of the daily administrivia.

As for me, I am already looking forward to maternity leave which I will be making the most of come April. I am not due until June however, because I have not been at Servus a year, I do not get a job protected leave with benefits. The implications of this are that with no job to return to, employment after child #2 may come sooner albeit probably later than my year off. So why not take the time to spend with Jakob. Besides, there are aspects of my job which are not worth the stress, and sometimes, I am just tired. Other than that, nothing to report, which is the way that I like it. The parasite seems to be doing well.