Hi I’m Jen- I'm one lucky lady to be married to the most wonderful man, Jason. I am a mother to three beautiful children, Grant, Norah, who was born with hydrocephalus, and Mason. I love spending my time with my family. I also like to challenge myself with new things. I'm on a constant quest to become more organized, it may never happen but it's a dream. I currently work part-time as a RN in an emergency department. I love this journey of life that I am on with God by my side, knowing that all things are possible when you Believe.
All good things must come to an end - 12 weeks have passed and today I have to return to work :(
This is the longest maternity leave I have ever taken, and am glad I was able to do it. I am blessed to be in a situation where I only have to work part time, but right now I feel like part time is still going to be too much time away from my beautiful babies (Grant tells me he's a big boy, but I tell him he'll always be my baby). I work as a registered nurse, which is great because of the flexiblity of my hours and the variety of different things I could do, for now it's working in an emergency department. So today I will wake up early, and head off to work where electronic charting has been introduced since I left, as well as a change in management. Coworkers have left and new ones have come. I will be anxious, finding my way again and having my little munchins on my mind at the same time. This will all make the day long. I will be happy to be home at the end of the day.
Charlie is our Cockapoo that Jason and I brought home the week of Christmas of 2004. We had been married a year and half, I had wanted a dog since we bought our house a year earlier. We loved Charlie from our first day meeting him and getting first pick of the liter. We even made birth announcements for him, oh yeah we did. Charlie was our baby, we bought him super expensive dog food, made him treats from scratch, made sure he had the best bed a dog could have (a memory foam mattress with a down blanket). We went to dog training classes, we spent afternoons at the dog park and his haircuts were more expensive than mine. We were able to teach Charlie how to ring a bell when he wanted to go outside. Charlie would cuddle up with stuffed animals, and did what we called pawpaw them, it was the cutest.
A few months before Grant was born, Jason and I were watching Save the Last Dance, and the scene were they are sitting in the clinic and the baby is crying, Charlie started howling. Full on howl, he was being completely sympathetic to the baby, it was so cute. It was so cute until we brought home an infant that cried, and there was no place to escape. Well, the older Grant became there were less and less crying fits and Charlie's howling also became less and less. I would go for walks pushing the stroller with one hand and holding on to Charlie's leash in the other. Grant loved Charlie just as much as Jason and I did.
Here's a video of Charlie howling while Mason is crying.
Then Norah came along. The howling returned to being an everyday, multiple times a day thing, and Charlie's rank in our house dropped as well. Charlie began spending more time outside, up or downstairs, anywhere but where crying babies were not. In the midst of all this, there was a day when Charlie bit Jason. This made us worry, are the kids safe to be around Charlie. I would have so guilty if I would let my kids become hurt by our dog. More separation was made between Grant, Norah and Charlie. Long conversations were had and places were sought out where we could send Charlie or give him up. My heart ached at the thought, Charlie was part of our family. I would never give up on my children, so why do I think I can just go give someone my dog. In the end Charlie stayed, Grant and Norah continued to grow, a watchful eye was always kept on Charlie and it was fun to watch the kids bond with him. Grant and Norah would ask for a kiss or shake his paw or play fetch, and Charlie loved it.
Once Mason arrived in June, Charlie instantly reverted back to his howling. This time you could see him becoming depressed at the situation. Jason and I decided the stress that we were feeling, was also shared by Charlie. It was time to pray about what to do and work harder at fining a solution.
A month ago, Charlie went to spend a week with someone who was looking for a dog. We agreed that if things did not work out we would take Charlie back. I haven't seen Charlie since that day. We could go and see Charlie if we would like, but I don't think my emotions could handle it at this point. I hear that he is happy, getting to go for two walks a day and being spoiled. I am happy to hear he is adjusting to his new home, and that it has worked out so well.
This had been hard, I miss Charlie. He did a great job protecting our house, and there is nothing like the unconditional love that a dog has for you. Dogs have a great sixth sense, able to sense your feelings and are always there when you need them. It is hard when the kids ask about Charlie. We are adjusting to life as former dog owners. As Jason puts it, "I miss Charlie, but I don't miss Charlie more." The stress that would come over us when one of the kids would cry and the howling that would follow was overwhelming. I know some people would think that we did the unthinkable. I think that we did the best for all of us, we are all is a better place now.
A few weeks ago Jason started playing Angry Birds on his phone, which led to Grant playing Angry Birds on his phone, which led to the Chrome version of Angry Birds being downloaded to our TV/computer, which led to me being introduced to a highly additive game.... I think Angry Birds will need to be deleted (but not until all levels have 3 stars).
Then tonight I noticed Mason being attacked by an angry bird!!!
Ha! I just looked over to see the bird resting on Mason's head as he naps.
On Saturday I asked Grant to clean his room. A few minutes later I hear Grant crying to Jason...
Grant has cleaned his room, on his own several times in the past, sometimes without even being asked. So this went on, and on, and on. Then a few minutes later Norah started telling me this....
Oh my does she know how to copy her brother or what? I wish that this was as bad as days could get, wouldn't that be nice? I also agree with Grant, a Chai Tea Latte does help to make the day good. I hope you are having a good day :)
**By the way, their rooms were cleaned, followed by an afternoon of fun.
These birds are bullying the cute, pretty birds out of our yard and I want them gone!
All summer I have enjoyed the cardinals, sparrows and robins (also a few other varieties of birds I have no clue what they are called) play in our yard, bathe in the bird bath and let Grant chase after them. That was until these big bullies showed up a couple weeks ago. Now I see the birds try to fly into our yard only to have one of these big guys fly in behind it and keep them away. I miss the pretty birds.
This brave robin is one of the few birds I have seen this week, other that the bullies.
A few weeks ago these little braces made their way home with us. We have been working to get these approved by our insurance since the middle of March.
Norah has had no objection to wearing her braces, and occasionally I see her trying to put them on by herself. Then sometimes I find her taking them off or Grant taking them off (he's not a fan)...overall it's been good. I see more stability in Norah's walking now that she has the braces. She is able to talk five or so steps between Jason and I that are more controlled than ever before. At therapy the last couple of weeks she has been showing off even more taking steps like a pro. Since getting these it has also shown us that her balance and coordination are lacking more so than we had realized. This makes us wonder if her Chiari malformation is more problematic than previously thought to be, especially with the eating issues and vomiting. So now that those pesky hernias are repaired this is the next problem to tackle.
We went out and bought a new pair of shoes the match her cute little braces perfectly. I love how they just blend in with her socks and shoes. I have to credit Jason with the cute pattern on her braces, he went with her for the last sizing when they were ordered and picked out the pattern. Flowers and butterflies - super cute for our little girl.
Today Norah had her inguinal and umbilical hernias repaired. We have learned that with hydrocephalus hernias may come as well. Norah has a VP shunt, the tubing that is connected to her shunt ends in her abdomen. The CSF that drains into her abdomen causes increased pressure making her more susceptible to a hernia. Surgery is the only was to correct an inguinal hernia. It was important to get Norah's hernias repair sooner rather than later because we did not want her shunt tubing to get into the hernia, which is rare but can lead to bigger problems. While often an umbilical hernia in a toddler will go away on its' own, the increased pressure makes that unlikely for Norah, even though it is really small. As long as one was being fixed it was a good time to fix everything. Her surgeon was also going to look at the other side just to make sure there wasn't a defect or a small hernia already there. So this morning we left Grant at home with Jason's mom, who the kids call Mimi, and headed to the hospital with Norah and Mason. The hospital doesn't usually allow anyone under 18 into day surgery other than the patient, but they were great about letting Mason tag along. Norah knows that when we pull up to the hospital something for her is in store, she handles it in stride. Lately we've been there a lot, and she recognizes certain areas. Whenever we get close to the radiology department she starts to hyperventilate, and been those quick breaths she starts saying "I need stickers" over and over again. It makes me smile in the moment, she's trying to cope, but my heart breaks she should have to know hope to cope with such big things already. She shouldn't have to fear being held down for a test. Today was no different, I was amazed how Norah handled everything in stride, she and Mommy and Daddy are getting better at this going to the hospital thing, it has unfortunately become part of our life.
Playing in the waiting room once we arrived this morning.
Jason and I are mastering the art of keeping Norah preoccupied, protecting her from all the big scary things happening around her. Today is was making goofy faces, reading Princess Baby (over and over and over again) and playing angry birds on Daddy's phone before surgery.
Here's a video of Norah just before surgery and after the gave her versed to relax her and start the sedation process, she's pretty cute.
After surgery, as I walked into the recovery room Norah was very upset. She did not like waking up alone, she could not get up into my arms fast enough and I was elated to have her in them again. The was two attempts to set her down, one before walking from the recovery room back to day surgery, and one right before we were discharge, just getting near the bed and the thought of being set down would bring the tears and crying, so in our arms she stayed. Mason was also a trooper throughout the day, he had a sleepy day. He slept from the moment we arrived until Norah was in surgery. He woke up and nursed like a champ, had a near blow diaper then back to sleep until we were on our way home. Amazing.
Snuggles while we wait for our discharge instructions.
Tonight at home we kept things low key, brought home some take out for supper, and made a snuggle spot on the sofa. Grant was quick to notice the bandage on Norah's tummy and help bring Norah's attention to it as well, so we changed Norah into a onesie to keep it safely covered.
This was our happy little girl before bed....so happy she is!
I've never been so happy or ready to move after I have had surgery, she's something special!
Monday Norah went for an upper GI xray. She had to go without eating until the xray was over which left us with a little girl begging for her pediasure. We went to a radiology clinic that was free standing from the hospital and closer to our house. I went in the back entrance, which was a bit of a mistake. As soon as we walked through the door, Norah saw all the different radiology rooms and began to hyperventilate. Between her breaths she was saying "I need a sticker." Over and over again. I think this little girl has been help down one two many times and been given stickers to soothe her in the situation. She put up fight for the xray but we were able to get her to drink enough of the barium while under the fluoroscope to get the pictures needed. The report shows some mild reflux, but no structural problems. Good news, but doesn't necessarily explain why she's coughing while eating, and why her chewing skills are poor.
Today was our second day this week where Norah had to go without anything to eat since the night before. This morning she went for a MRI of her head and spine which she had to be sedated for. It was to check on her hydrocephalus, to see how her shunt and ventricles look, to look at the chiari malformation and to look at a possible syrinx in her spine. Norah started things off with a bang. She got a little over sedated initially, and kept desaturating (where your oxygen level drops) so about the time they bring up intubating her, she decided that was enough fun and began to cooperate. I must say this was the first time that we went and her IV was started with only one poke. Usually it take five, six or sometime eight to get her little veins to cooperate. I was thankful for the one poke. Norah also woke up quickly from her sedation, which was a nice change from our previous experiences.
We meet with a new neurosurgeon to the group of neurosurgeons that Norah sees. Initially I was leery to see yet another neurosurgeon. I feel comfortable, or as comfortable as you can get with the person that has to cut into your daughter's brain, with her neurosurgeon. So I wasn't sure about this, especially after researching a bit and finding out he had just finished his fellowship. In the end with all the symptoms and changes we had scene in Norah since her last formal visit in February it was important to be seen sooner rather than waiting a month to see her regular neurosurgeon. I also had a couple conversations with one of the PA's that work with the neurosurgeons that helped in making our decision. I thought this neurosurgeon was personable. He spent time talking to us. We reviewed Norah's MRI together and he pointed out different things. We discussed her slit ventricles and what that meant for Norah, giving us more understanding. Conversation was had about her Chiari malformation, it was a what came first conversation, the chicken or the egg? Or in this case, the chiari or the hydrocephalus? This lead to discussion about Norah symptoms and how they fit into all of this. Wheww! All this while Norah kept wanting to climb up on the chair and exam table, and Mason had began to wake up wanting to eat.
So what now, you might be wondering? Norah's chiari is bigger. He thinks that the pressure in Norah's head may be higher that we can see because of her slit ventricles. That because she has slit ventricles they do not always expand back open when pressure is high, making it had to see a shunt failure or anything else happening. So on Friday, Norah will once again be without anything to eat to have yet another test. This one is called a Shunt-o-gram. I feel like it should come with a post card or some silly greeting with it. They check the flow of her shunt to see where things are going and how long it take for the CSF to move around and where it goes. Then we'll talk again with the neurosurgeon. There is a high possibility that when Norah is having surgery on Monday to repair her hernias she will have a programmable shunt placed. OH did I mention on Monday Norah will be having surgery to repair an inguinal hernia and a small umbilical hernia, she is. This sweet and precious little girl of ours sure is keeping us busy lately. That's all for now, sorry for the grammatical errors, I'm exashausted. Time for bed, tomorrow morning we have therapy to go to.
Norah playing with the oversized pants they gave
her this morning because she was cold.
I have lived in the Milwaukee area for 9 years this fall and have never gone to the domes. Yet as I drive to work I can see them in a distance, and I usually think "I need to go check those out." It has always looked like a good place to go exploring. I have had planned playdates to meet up there in the past that have been cancelled because of sick kids or bad Wisconsin winter weather. I finally made it there. Jason and I packed the kids in the car last week and went to the domes.
There was a savenger hunt activity to complete while we were there. Honestly I don't know who had more fun finding this hidden objects.
We had fun. It was just the right size to let Grant and Norah explore and not too busy.
I loved how Grant was able to sneak up on Jason and spray him. Grant was so proud of himself. Norah didn't want to let go of her water gun once she had it.
I am worried about Norah. While I worry about Norah every day, this worry is different.
Today we saw Norah's pediatrician and shared with him all of our concerns about Norah that have developed over the summer. How things have emerged that previously haven't been a problem before or have gone unnoticed because she was an infant. Some things just aren't as noticeable until your get to the point where a child should be able to do it without difficulty or can tell you it's different than the norm. I am not willing to sit around letting little things turn into big things, or to see Norah lose progress and abilities she has previously been able to do.
Our pediatrician listened to all of our concerns, really listened, probably got behind seeing other patients because we discussed and reviewed everything listening. He referred us to new doctors, who practice outside of the children's hospital but are still affiliated if Norah was to need inpatient care. He said that he has seen some of these doctors for his own kids, that makes me feel better. I left his office with a plan and feeling better about my concerns.
The plan, call the neurosurgery team and relay all the concerns, stressing Norah's appointment should not be delayed for another month. (It was cancelled and no appointments were available until the end of September). They agreed with all of our concerns so Norah's MRI for next week is still on with appointment to follow after she wakes up from the sedation (amazing how that appointment reopened). Meanwhile, Norah will have an upper GI x ray to see what kind of swallowing problems, if any can be detected. An appointment with an ENT is also being scheduled to see if Norah's tonsils and adenoids are causing problems. We were able to make an appointment with a new neurologist. Norah's weight continues to be below the 3rd percent. Bless him for not using the statement failure to thive. She drinks two Pediasures a day to help gain weight and will continue to do that for now, with a weight check in four months. We are also contacting a new feeding clinic for additional help with eating behaviors and weight gain. Norah is also going to the eye doctor this week to check on her vision. I am sure there is more but for now that's what is on my mind after I spent lots of time on the phone making appointments and speaking with doctors this afternoon. All this while trying to set up some training at work so I can keep my job as a nurse and return to work in a couple weeks.
I feel like we were able to find a nice place this last year - Norah was healthy and thriving, making slow and steady progress. Then since late spring things have been building and I feel like now I'm sitting on an active volcano about to blow.
For now this is a verse that I turned to while I was pregnant with Norah and am using to remind myself to put that worry away.
Philippians 4:6-7: Don't worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. Then you will experience God’s peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus.
Please keep Norah in your prayers as we head into lots of appointments in the next couple of weeks, as well as surgery to repair her hernias.
I love summer and one thing that there is plenty of around here is concerts in the park. It fun to go as a family, listen to good music as we eat dinner. Then the kids run around playing while Jason and I can relax and enjoy the music. This particular evening it was swing music that was lovely.
It's best if we can bring a picnic dinner, but sometimes that doesn't always work out and that's why it's nice that all of these concerts have food vendors. If they weren't there we wouldn't have made it this evening.
This week I think we'll tackle downtown and go to Jazz in the Park, I just have to Jason to agree now.
Well the last couple of months Norah has kept us on our toes. Jason and I have just felt more anxious and worried about her overall health. We haven't had any episodes of vomiting, but we have seen changes in her activites and behavior.
Norah continues to be underweight. She currently is weighing in at 20 pounds. In May she weighed 18.5 pounds, and we started giving Norah Pediasure twice a day. Our goal was to have Norah gain weight, hopefully helping her grow and increase endurance. Norah tires out quickly if we do any activity that requires moving around, or using her walker. On therapy days, she is wore out for the rest of the day after a busy morning of working with her speech and physical therapist.
This last month Norah seems to have hit a plateau or even slightly regressing on progress made previously on chewing foods. She has begun to grimace occasionally when swallowing. She has also developed a crackling cough, it's not there all the time but when it does come it's usually after eating. She sometimes has a soft scratchy voice with this. We are wondering if she is beginning to aspirate.
While Norah has made good progress on her cruising and walking skills she cannot stand or walk independently. Occasionally she will tease us with a good 5 second stand or standing up with a couple steps to follow. She loves to walk, holding on to our hand and has since last spring. This last month her coordination with the ability to do this has worsened. Not significantly but enough for us to notice and her physical therapist.
Norah had an eye appointment next week. Since our appointment to the neurologist keeps getting cancelled we at least can find out if some of her usually behaviour is related to visual problems. She has mild strabismus, where her eye don't move together. We are also wondering if she is color blind.
Norah continues to "off" days where she just isn't her happy, smiling, talk your ear off self. They make me worry about this precious girl that is my daughter. My heart is heavy with worry, wondering if I'm missing something or am I stressing over nothing. I ponder many questions in my head; Could her Chiari be worsening? Could her tonsils and adenoids be to big causing difficulty swallowing? Is she just trying to be a normal 2 year old? Could her hernia just be bugging her and making walking more difficult? So many questions I wish I could turn my mind off sometimes.
Monday is Norah's 2 year check up with our pediatrician, the one who helps to reassure me with my concerns or is instrumental in getting us the help we need when things change. I had multiple appointments schedule for all of Norah doctor's this month. However many of her doctors have cancelled appointments scheduling them for September. I'm hoping that either our pediatrician will calm my fears and worries, or help to contact her doctors to open up an appointment for us. I have written a letter to the hospital sharing my frustration but am also wondering do we need to seek out care for Norah somewhere else. I pray for guidance on this road. Monday, will it come soon, can I plan enough activities for our family to distract me in the mean time? Will Monday come and leave me more questions and worry?
2 months. 8 weeks. I feel like I blinked and here we are 2 months later.
Mason, you have already grown so much, today I tucked away the first outfit you have outgrown. I sure there will be a few more in the next couple weeks. You are growing so fast because you eat and sleep amazingly well. I appreciate your patience as I tend to your siblings and appreciate that you let me know when I have taken advantage of your patience. I love the beautiful smiles that you give while you sleep. Your first month you were such a noisy sleeper, but now you have found peaceful slumber, I'm not sure which one makes mommy more anxious. Yesterday you gave me you first on purpose smiles. It came in a two parts. First the left side of your mouth would turn up to smile, then a few seconds later the right side would follow. You are tolerant to the gently yet aggressive touches from your brother and sister, as they come to say "I love Mr. Mason" and to soothe you by given kisses or pushing your paci into your mouth. You are not to found of that paci, unlike your brother and sister (who still doesn't want to give it up), but you'll occasionally put up with it while I try to quickly finish a task. You have learned quickly to tag a long with us on play dates, therapy and doctors appointment. You usually sleep through the event, but if you do wake, you are wide eyed taking in the new surroundings. You don't mind spending time on your belly as long as mommy or daddy are right next to you making it fun. I still marvel at how much you love your bath time since that first bath. Never tears, you just want to sit and soak as long as mommy will let you. I sneak in as many snuggles and cuddles as I can, and you don't seem to mind, Thank you. Don't ever forget that I am always available for a snuggle if you need one. Love, Mom
While I was home over the 4th of July, one of my sisters sent me home with a starter bag of Amish friendship bread. I was happy to take it. It had been at least a year if not two since we last had a batch, and the bread is never a disappointment. If you've never had Amish Friendship Bread, here's the story. I wonder which keeps going longer, an batch of this bread or the energizer bunny? Well we made our first batch that was delicious, then I had the three batches to share. Well, with the new baby in the house and with Norah keeping us on our toes with lots of appointments right now, I ended up having two bags of starter left, that's enough for eight batches, I like this bread but that's 16 loaves of bread, let's not get crazy. I started to search for recipes that others have made with this mix and I was not disappointed with the variety of recipes I found. Here are two that we tried and tweaked that I had to share and with what was left I put in my freezer. I think that Jason will demand the struesel instead of just the bread from now on. Yup, it's that good.
Amish Friendship Brownies
In a bowl, combine and mix well:
1 cup oil
1/2 cup milk
3 eggs
1 tsp vanilla
1 cup Amish Batter
In a separate bowl combine the following dry ingredients and mix well:
2 cups flour
1- 1/2 cups sugar
1-1/2 tsp baking powder
1/2 tsp baking soda
1 box instant chocolate pudding
3 ½ Tbsp of cocoa
1/2 tsp salt
1 cup pecans or walnuts (optional)
Add dry ingredients to wet ingredients. Mix and pour into well greased and sugared 12.5 x17.5 jelly roll pan. Bake at 325 degrees for 30 minutes or until toothpick comes out clean. Start to check after 25 minutes. Once cool frost with chocolate buttercream frosting.
Amish Friendship Streusel
This recipe is just following the basic recipe, it just making the streusal part and baking it that's different.
BASIC RECIPE:
To the balance (a little over one cup) of the batter, add the following ingredients and mix well.
1 cup oil
1/2 cup milk
3 eggs
1 tsp vanilla
In a separate bowl combine the following dry ingredients and mix well:
2 cups flour
1 cup sugar
1-1/2 tsp baking powder
2 tsp cinnamon
1/2 tsp baking soda
1 - (5.1 oz) box instant vanilla pudding
1/2 tsp salt
1 cup walnut or pecans (optional)
Streusal Topping
1 stick butter at room temp
1 C packed brown sugar
1 C flour
cinnamon - as much or little as you like
Mix/cut the ingredients together.
Pour ½ of the batter into a greased and sugared 9 x13 glass baking dish. Top with ½ of streusel, then add remaining batter and finish with remaining streusel. Bake as at 325 degrees for 45 minutes or until toothpick comes out clean, start to check after 35 minutes.
Next time, I think we are going to try lemon poppy seed bread, I hope it's as good as these.
