the sandbox

I am almost always taken off guard when I start to picture all three of my children in a place. Recently I had the two girls at a nature center and they were playing outside in the sandbox. All of a sudden it hit me - "there should be three children here". And then the questions start "which one would he look more like", "what would his personality be", and so on and so on. 

I miss him all the time, but there are times it just hits me like a ton of bricks. 

I recently heard my coworkers granddaughter is in the NICU and is very seriously ill. I feel extremely blessed to be able to offer assistance to her family and yet sad at the same time to have that skill and ability to feel that pain. It is both a gift and a curse from my son. I am eternally sad to have lost him but eternally grateful to be able to help others. 

Since my son was not in the NICU that is not something I feel comfortable talking with families about. However, I am blessed to know a very special woman named Penny whose son was in the NICU. I contacted her right away and she is willing to talk to the family as I knew she would be. This network of bereaved parents I have become part of are an amazing, graceful group of people and a testament to the resilience and kindness of humans.

Eating Lifestyle change

We started seeing a dietitian recently to help us find a reason for Bethany's diarrhea and slow weight gain. She finally hit 20lbs - yay! The dietitian suggested the GAPS diet. I have done only brief research on the diet. Based on her recommendation we have cut out all processed foods. She lives mostly on meat (protein), veggies, fruit, nuts and eggs. As a result so do the rest of us. I make exceptions for Chelsea and Josh for lunches but for the most part we have all adopted her lifestyle diet.

There is something very freeing about only having to cook a meat and a veggie at dinner. I used to always have something I considered to have more substance, like potato or rice. Now I just cook more of the meat and veggie and I'm done. It's great.

Bethany's diarrhea is better but now she has developed an eczema like rash on her left leg. We can't win. So we continue with the diet and we'll let you know how it goes.

Holidays & Hockey

This year I have finally regained my love of the Holidays. After my son died in 2010 I had a difficult time with all holidays and especially birthdays. As time has passed I have been able to feel more happiness then sadness during those times. There will always be sadness because my son is not here, but I welcome the happiness too.

I struggled to find ways to include my son, but I think I've got it now. I talk about him when ever I want and I help other families through their grief journey through an organization called Share. This has been unbelievably fulfilling.

Onto happier topics, This year we are going to one of my best friends house for Thanksgiving. We are doing it on a weekend because of work and life schedules but I am so excited. Our kids are 1,3,4 and 5 so it will be super busy, but super fun!

My 4 year old, Chelsea is going to start hockey on Saturday. I can't believe how much she loves sports. I played sports but didn't love them the way my daughter seems to. My mother has a great love of sports and was super competitive. Chelsea seems to have the competitive spirit. We had to go to the rink this week to get her equipment and the high school team was practicing while we were waiting. She was so engaged, watching the practice. She would watch and ask me questions and it was one of the rare times she was still by her own choice. Life is about to get busy!

It's been a long time since I posted last. Things have been super busy.

Bethany had some alternative allergy testing done - don't ask me how they do it because I'm not sure. They take a few drop of blood apply it to some kind of index card and are able to test for like 99 allergens. So she came back reactive to dairy, gluten (no shit Sherlock) green peas (what!) a couple kinds of fish and peanuts. We have been giving her peanut butter and she has had some residual GI problem. So I'm hoping that getting peanuts out of her diet will fix that. So here we go again with another diet adjustment-hopefully not so life altering this time. I suspect this will be a lot easier.

Chelsea is doing great at preschool. She loves it! This year she has boy and girls friends, last year she pretty much played exclusively with the boys. She's a mover and the other girls are often doing projects that require sitting. So Chelsea prefers to play with the boys - I think it's great.

Chelsea just finished her soccer season and she absolutely loved it. I can ask her everyday what she did at school and she can't/won't tell me, but when I ask her what she did at soccer she can tell me everything she did. So now we are gearing up for hockey season. Luckily the hockey league supplies most of the equipment. She is super excited for that.

I decided to start exercising my right brain. My whole life I have been a left brained person, I love science and math, I'm a nurse, I never considered myself to be crafty or artistic in anyway. But I have really been enjoying making Christmas ornaments out of felt, painting signs, picture frames etc. Here's picture

newest updates

We met with a naturopath today. The pediatrician and the GI doc have both said "it would be nice if she gained more weight", but they have nothing helpful to say beyond that. So I thought bringing someone in that does integrative medicine would be helpful. So we went through Bethany's whole story and we did some blood work. We will be starting a regimen to get her gut back into line. The naturopath is very suspicious that her gut flora is not what it should be. So at this point I don't think the treatment she prescribed will do any harm. So we will start that hopefully later this week. When I get done with this post I need to go inform my husband, generally her goes along with whatever I say. But sometimes he balks.

I opted for the blood work instead of furthering her dietary restrictions. Gluten free/ dairy free isn't too hard but it's hard enough. I don't want to eliminate another food if I don't have to.

In house related news, my husband got our bedroom finished. We now have double the space we did before and each have our own closet and it's awesome.

Chelsea is playing soccer and loving it. I can ask her everyday what she did in school and she tells me "I don't remember". If I ask about soccer she can tell me everything. I guess I have a sports nut on my hands, which will be hard for me. I played sports but I really don't have a competitive bone in my body. My mother on the other hand was very competitive. This is going to be a huge adjustment!

flying

I have so many things to share. I'll start with my trip last weekend. I met the loveliest woman on the first leg of my flight to Saint Louis, I'll call her Marie. We started a conversation about food because she asked me if I wanted her snack bar they gave out on the flight. I politely declined, she said she is allergic to gluten. I told her my daughter is also. She said "I'm 70 years old, it seems strange to me that I would become allergic now". She went on to tell me it was her daughter that diagnosed her, no her daughter isn't a doctor or nurse, she's a biochemist. Marie went on to tell me that her daughter used to do cancer research and because of that research she now lives on a working farm because she wants to be able to control what she eats. I asked Marie if I could go live with her daughter. My dream is to be able to grow all my own food. I truly believe our food should be organic and locally grown. This can be very hard to sustain. I work, my husband works, I have 2 small children.

It amazes me that the people that need to be in front of  you with a reminder suddenly appear. I have been failing miserably at eating locally. Marie reminded me of my passion and my quest. Thank you Marie, I hope you had safe travels.

How do you all eat locally? Do you buy from farms? Do you grow your own? Do you just try to but organic in the grocery store?

time

Things are going great with Bethany so I thought I would post about another part of my journey through motherhood. 

How do people find the balance? I love my job and I love my kids. I have such a hard time finding the balance. I feel like every minute I'm home is consumed with things that need to be done and I don't get to spend it with my kids. I always feel better when I have meals planned for the week, but rarely get that done on the weekend. This weekend I'm working nights so nothing gets done. I literally slept from 9am to 5pm today. I stopped this morning after work to help my gram take her shot for RA and went home. I saw my kids for about 20 minutes from the time I got up until I had to leave. I so worry they are closer with my parents then they are with me. Don't get me wrong, I'm so happy I have family that is close by and involved with my kids. So, I'm done complaining. I'm very thankful for what I have and sometimes I need to remind myself of that. 

visiting nurse

Bethany had a visit from the visiting nurse today. I have to say I liked her, she didn't sound so bright on the phone but I was pleasantly surprised. She asked me if we had considered anything alternative. I told her I was thinking of having some alternative allergy testing done at a local, well renowned alternative medicine clinic. The nurse mentioned something about GMOs. I can't say I have given GMOs specific thought, my general feeling is the world is full of crap. I don't agree with genetically modifying food, I don't believe in mass producing food, I do believe in buying as locally as possible.  I also live in reality and I know you can't have everything you wish for. So I try to buy locally, I try to buy organic.

Sept 10

So things have been going well at home. Bethany's weight was up, but today it was down. So I'm not really sure what is going on with her but tomorrow they are picking up the feeding tube equipment tomorrow.

We have totally created a monster by letting her eat what ever she wants. She needs to gain weight but having cake for breakfast is not usually my style. Don't get me wrong, the cake is delicious, it has three of my favorite things in it, chocolate, wine and pumpkin. It gluten and dairy free too! But cake for breakfast needs to stop.

Last night I was elected president of the board at my daughters montessouri school. This should be interesting. I think I've overextended myself, I'm also on the board of Share Southern Vermont (a pregnancy and infant loss support network) and APIC NE (my professional organization for nursing). So it's going to be a super busy year!! All of these organizations are things I care about, so I think I can make it work.

I've always admired those people that do a lot of things for their kids. You know those moms who coach (my mom and sister-in-law), are on the PTA, and have a clean house. I didn't really know if I had it in me to be one of those moms because I have a 30 mile commute to work 4 days a week and work 35 hours a week. So now I'm going to know what it's like to be one a joiner. My sister-in-law is always coaching and she watches my kids and her house is always clean when I drop them off. You should see my house right now... laundry everywhere, the doll house is in the kitchen, the beds aren't made, stuff all over the bathroom counter, I mean it's a mess. To the point that I have planned to leave work early, leave the kids at my sister-in-laws house so I can clean! It's just ridiculous.

I am continually telling my husband that I want to work less. We really can't afford for me to work less but in the fantasy land in my head I keep thinking it's possible.

proud mama

So Bethany was discharged almost a week ago. She came home on Labor Day. Luckily we were able to find a vendor who would bring us a feeding pump on the holiday. She was on tube feeding until Thursday when she vomited and the tube came out. We were really worried it would need to go back in but today she seems like she's going to make it without it. We decided to go gluten free even though both of her celiac tests came back negative. I really think that is what has been different this time home. The formula they had her on is gluten free, hypoallergenic and of coarse dairy free.

I had to go back to work Josh was with Bethany the day she was discharged. All the nurses were so impressed with him and how he was able to give her meds and deal with the NG tube. I'm so proud of him. Annoyed that it has to be a big deal for a dad to be able to deal with their child, but proud of him!

I'm proud of Bethany for being so tolerant throughout this ordeal and I'm proud of Chelsea for being a wonderful, protective big sister.

This gluten free thing is okay. It's not quite as hard as I had thought it might be. Love pinterest for finding recipes. I just made a chocolate, pumpkin, red wine cake. I'll let you know how it comes out.

home at last

So here we are home with Bethany on tube feeding at night. So far it's going well. Josh has really stepped up and is taking good care of her with her tube. We will try to wean her off the tube feed gradually. She is still needing medicine for nausea, I wish her nausea would go away. It's terrible to see her in so much discomfort.

Today is my normal day to have MJ. He's the 6 month old I watch for a friend.  He pulls hair, so my worry is he will pull her tube out. He can't be left alone for a second anyway because he puts EVERYTHING in his mouth.

Chelsea started full day preschool yesterday. It's nice to have just the two little ones. Chelsea can be an immense amount of work sometimes.

My wonderful husband & more progress for Bethany

So my husband, Josh is staying with Bethany tonight. And he stayed last night. It has been good for me to be home with our 4 year old Chlesea.

Bethany is doing well on her tube feed. They increased her rate so she could be off for 4 hours today and tomorrow will be longer. Our goal is to feed her through the night and have her off it during the day. She could potentially come home tomorrow, but because it's a holiday it will probably be Tuesday. We still are not 100% sure what her problem is but hopefully a 6 week intermittent coarse of antibiotics will cure her.

Being home allowed me to spend much needed time with Chelsea and cann 41 pints of peaches. We love having peached in the winter that come from my grandfathers peach tree.

This is from the beginning of August, the last time Bethany felt well.

the beginning

I have a minute  right now so I thought I would tell a little more of our story. Bethany is almost 15 months old and she has been sick since August 4th. It started as a viral illness will fever and diarrhea.  The fever lasted a few days but the diarrhea never went away. After weeks of diarrhea she progressed to vomiting. We saw the allergist for a previously scheduled appointment and she suggested we see the GI specialist. We of coarse saw the pediatrician because Bethany was so sick for so long. The day we saw the GI doc she admitted Bethany. We spent 5 days at the hospital mostly so she could get tube feeds to catch up on her nutrition and hydration. She also had an upper and lower endoscopy. Those both showed nothing abnormal. She was starting to improve and seemed to be hungry so we went home. The next day the diarrhea returned with a vengence. The following day the vomiting came back. After Bethany puked for the third time I deciced we were going to the ED. So we drove the 50 minutes to the hospital.She threw up again in the ED. Since we have been back she has had an IV placed, another NG dropped and had a small bowel follow through series of xrays. She has been such a trooper. She hasn't touched her NG since it was placed yesterday. We may have to take her home with the NG but I'm a nurse so I'm ok with that.

back at the hospital

So here we are back at the hospital. We came through the ED this time. Bethany hasnt been eating or drinking today. The diarrhea has continued and this evening she started vomiting. So back in Goes the NG tube. More to come, they just brought her back

Day # 1 Gluten Free

Today was day one of our gluten free trial with the baby, Bethany. And what do you think I bought? The wrong kind of pasta! Oh well. I didn't actually feed it to her, so at least I have that going for me. Bethany is 14 months old and is having major GI issues and is unable to gain weight because of it.

We were just in the hospital for 5 days trying to figure out what is going on. She had an upper and lower endoscopy. We haven't recieved the results yet but after the explosive diarrhea she had today we need to try something. So gluten free it is. She also has a milk allergy so it's going to be quite the adventure for us.