Montessori and Updates


It’s been too long, so apologies since this might be an extra long post. Time passes quickly and before I know it I haven’t posted in weeks. I’m sorry…life is strange for me right now. I’m in limbo. We continue to wait. The insurance appeal for her genetic testing (SNP array) is still in process. We got a letter from her pediatrician that tells the insurance company that it is a medical necessity. I’m hopeful that will move things along.

On August 8, we meet with the developmental specialist again and I hope that we’ll get some more answers. It’s a follow up appointment and a second opinion combined in one. I was hoping we would have the SNP array test results to go off of but that’s looking VERY unlikely.

At Roo’s two year pediatrician’s appointment, her doctor told us point blank that she believes that Roo is on the autism spectrum. She also told us that the first neurodevelopmental specialist called her and told her that information (which isn’t in the medical record). I’m so confused and sad. It is something that we will look into further on Aug 8. Ugh.

The primary concerns for being on the spectrum include:

  • Being very rigid
  • Being non-verbal (though she communicates through sign and has some words)
  • Obsessed with certain items and actions

It’s scary. At this point, I just want a diagnosis. I want to know what we are facing. Are we facing mosaic down syndrome? Are we facing autism? Are we facing some other diagnosis or a combination of things?

Time will tell and until then I have to practice patience.

In other news, I want to share a dream that I have that I think I will make come true.

When I was a child, I went to Montessori school until 1st grade. I even thought about becoming a Montessori teacher. I burned out of PR and quit my job. During an 18 month period, I took classes towards my Montessori teaching credential. I always knew that I wanted any of my future children to go to Montessori school. I love the philosophy. If you don’t know about Montessori, please check out this link to learn more.

Before we knew that Roo’s developmental delays were as significant and “lingering” as they are, I visited a couple of Montessori schools in the area that I heard were really good. I fell in love with one in particular and even have convinced a friend that she should send her son there too. But, I recently called the director of the school to talk to her about Roo’s delays and to see if they have experience in working with other little ones with these types of delays. Her response was not surprising but also disappointing. She encouraged me to enroll Roo but that she wasn’t confident that they would be able to work with us and so both parties would need to be open to knowing “it might not be a good fit.”

Maria Montessori’s first school at the turn of the 20th century was for children with special needs. Her philosophy was built on providing a solid education for children who had special needs. It worked and many, if not most, of those children she taught learned so much and thrived. So I felt like the response I got was unsatisfactory. If Maria Montessori built her philosophy on helping those with special needs, shouldn’t Montessori schools carry on that same mission?

I shared this information with a friend who is a Montessori teacher working on her certification in special education. She said that I must open a Montessori school dedicated specifically to kiddos with special needs. She said that I have the resources and the know-how to do it.

The school would function as a Montessori school with teachers hired who are Montessori trained and certified as well have experience with special needs kiddos. I would also make sure that all of the extra resources and therapists needed to support those special needs are also available, such as:

  • Speech
  • Motor
  • Occupational
  • Autism
  • Whatever else is needed

I think the school would focus primarily on those with mild to moderate needs but could include anyone with delays like Roo’s, those with down syndrome and/or Autism.

I’m inspired and motivated. I am going to seriously consider doing it. I am doing research to confirm that there is a need and move forward. I’ve already connected with a woman who is a Montessori teacher and wrote a book about special needs inclusion. My therapist gave me the name of someone who just retired from owning her own Montessori school. I’m excited.

What do you think? If you are familiar with Montessori and/or have a child with special needs, would you send your child to a program like the one I’m envisioning?

To close out, here’s a recent picture of my sweet girl during the recent heat wave! xox

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365 Days of Gratitude


I’m trying to do 365 days of gratitude on my Facebook feed. Below is what I wrote tonight. I will update more soon.

Day 30 of 365: Roo underwent another developmental assessment today and we confirmed that she needs further neuro development/genetic testing and some additional weekly therapy sessions. It’s hard to hear that news about my cutie pie but I’m grateful to learn that we qualify for some free support resources and there are people who know more than we do to help us!

November 17 is World Prematurity Day


This is the second world prematurity day that we are here for since Roo was born. Last year, I was still in a fog to do much other than have it cross my mind. This year, I’ve been reflecting on it much more.

We are one of the lucky families. The toll has been great on us but much easier than other families I know in real life or online. However, our story is our story and the toll has been great.

I never thought much about prematurity. It never crossed my mind that Roo would be premature. But, who does like any other disease or illness or struggle?

For Roo, the toll has been ongoing medical and physical challenges. From her NICU stay to the reflux to the surgery for her crossed eyes to the weekly physical therapy to her eczema and food allergies, it has been one thing after another. I wish my little girl could get a break.

Yes, all of those things could still have happened to her if she was full term but I think many of her challenges are tied into her early birth.

Even with all of those challenges, Roo is the happiest, sweetest baby I know (I’m biased!). She is sensitive and shy but she is a caring and sweet little girl who rolls with the punches and takes the challenges head on. She doesn’t know life to be any differently and for that I’m grateful that she doesn’t realize that all little kids don’t need physical therapy every week.

As for me, the impact is greater. Emotionally, I was not prepared for the changes to my life. I know that life changes after a new baby arrives but life with a preemie changes even more. It has taken a toll on me as I struggle with depression. It has taken a huge toll on my marriage. MH and I struggle with some issues separate from life changing with a preemie but I think if the stress of dealing with the challenges of a preemie baby weren’t there, it would be easier to work on and fix those other problems. But, there is only so much room emotionally and psychologically to deal with challenges and we have to put Roo first right now. I worry and wonder if our marriage will survive. I now understand why parents of children with special needs have a harder time keeping their marriages intact. I don’t want to fall into the category where we fall apart. Some days I think it would be easier on my own. That makes me sad.

Adding to the stress, we were not prepared financially for the costs of having a premature baby. Our health insurance is great but has a very high deductible and we are afraid to make any changes for fear of losing access to the great providers we have established relationships with already. That high deductible means we pay a huge sum of money out of our pockets before insurance kicks in, which means any inkling of extra money is gone. PT alone is $500 a month or so that would have gone into savings. It’s hard. And, MH alone makes great money. With my extra income (I actually make more $$$) than MH, we will be able to get back on our feet more quickly and start to make up for the lack in saving the past year and a half.

Had we known what we were facing, in hindsight, we would not have purchased a 2,000 sq. ft. 4 bedroom house in the suburbs where we needed to buy another car, pay for lawn service because we have no time to care for the yard because we are busy caring for our child, etc. We would have not needed the fourth bedroom because we are not having another child that ER thought we might have tried for before all of this . We have three rooms in the house that virtually are unused because we haven’t had the time or the money to do anything with them. I love our house but we may need to move.

I’ve been slowly losing friends. It is hard to maintain friendships with old and new friends when I’m depressed and focused on Roo. My old friends were used to me calling them and returning calls. Now I’m too exhausted and I am also tired of hearing their words of “encouragement”. They don’t understand because they don’t have a preemie in their life. Distance makes it hard. I used to be able to hop on a plane and visit them but with our extra tight finances that is impossible. So my long time friendships are feeling very distant and farther away than ever. My new friends don’t understand either. Plus, I will make a play date with someone and then they or their kid gets a runny nose and so se have to reschedule. It’s a challenge. I’m feeling lonely. I know this will get better as Roo gets older and her needs diminish but I feel like now is a time when I need those friendships the most and I don’t have the energy to feed them.

This is a long-winded way of saying that life with a preemie changed in ways that go beyond the physical needs and challenges. The challenges are far-reaching. Life is hard no matter what. And, as one challenge ends another will surface. Overall, my life isn’t bad. I’m dealing with first world problems, which aren’t really too hard in the bigger picture. I should quit my whining.

Getting back to the point, World prematurity awareness day is a reminder that millions of babies around the world are born too early. We all need to be aware of the issue and do our part to help stop this problem. Visit the March of Dimes website and make a donation to their efforts to find a solution to ending prematurity. Many premature births like Roo’s happen for no rhyme or reason – even with perfectly healthy pregnancies and mamas like me. We were lucky to have world-class providers keep our little one with us.

Thanks again for following, reading, supporting Roo and me!!

(Top photo is of Roo in NICU towards the end of her stay. The bottom photo is of Roo a couple of weeks ago!)

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Car Seats on Airplanes


Saturday’s horrible tragedy at San Francisco airport (fortunately, only two people died) really impressed on me the importance of buying Roo her own seat when we fly anywhere.  No matter how short the flight, I will make sure she has her own seat and we have our car seat with us.  I can’t imagine the force of the plane crashing as it landed and trying to keep her in my arms.

When we flew to San Francisco six weeks or so ago, we didn’t get her a seat but there was an empty one next to us each way.  Had we known, I would have put her in her car seat.

The likelihood of an airplane crash is rare but this makes me think ten times more carefully about how we choose to travel with our precious little one.

What do you think?  Are you now more inclined to buy a seat for your little one?

Failure to Thrive Update


This is very late, sorry!

A week following that awful appointment with the nutritionist where I learned Roo had only gained ounces and not even one pound in the two months since our previous appointment, I made an appointment with our pediatrician. She was on vacation, so we met with another who we’ve seen before and like.

Like all appointments, Roo was weighed and measured prior to the doctor coming in. To my great delight, we learned that she had gained more than a pound and a half and grew about an inch. I knew that she hadn’t gained this much weight and grew this much in one week. The nutritionist was wrong. Something was wrong with her measurements.

I was immediately relieved and pissed. Relieved because my daughter wasn’t failing to thrive. She was fine. What I was doing was fine. I didn’t have to worry that there was anything wrong. I was feeding her enough and properly.

I was pissed because of the unnecessary anxiety that I lived with and feelings of failure as a mother. I was pissed because an error like that shouldn’t happen. Roo should have been re-weighed. I didn’t know to ask for another weight check. Next time I know better. I’m still thinking about whether or not we go back. But, I think I go back and complain and see what happens and go from there.

In the meantime, I can relax and feel proud that I am doing the right things for my daughter to help her grow and thrive. This face is not one who is failing to thrive!

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Effect of Children on Marriage


Psychology was my minor in college and so I often look at relationships and think about why they might succeed or fail. I now have two friends who separated from their husbands within one year of having their babies and are now divorced. I think before marriage and before kids, I would have wondered why they couldn’t make it work. I would have judged them.

Today, sitting on the other side of marriage and a baby. I get it. Marriage is hard enough without the stress of a baby. A baby is hard enough without everything else.

There have been times since giving birth that I’ve wondered why I married MH. I have thought about what it would be like to be a single mom. I don’t like the idea. It’s hard enough parenting with a partner. I can’t imagine really doing it on my own.

As much as I get annoyed with him and as much as we struggle, I need and want to make our marriage work. Not only for myself but also for our daughter. We have been doing marriage counseling a few times a month since January and it is helping a lot.

We continue to have a lot of work to do and I know that the road will not always be smooth but I hope that it won’t come to a point where we need to separate.

I could be wrong since I have never had a full term baby but I think the challenge of having a preemie adds to the stress of marriage. It is one of the reasons why we only want one child.

I get it though why those friends separated and then divorced. It would be much easier than to put the time and energy into it. There are days when I would much rather be on my own but I push those feelings aside and try to open myself to focusing on our marriage.

How do you refocus on your marriage and away from the stress of the baby? Did you have a preemie and do you think the stress is greater?

Update on Eyes


We have been to every possible pediatric opthomologist in the Seattle area, I exaggerate. A little. There are only a few and we’ve been to see the top three.

Two of them came up with two different diagnoses and treatment options and the last clarified and explained how and why this happened. We have a plan that we are comfortable with for now.

Doctor number one said that she has something called infantile esotropia in both eyes and is very farsighted. He says it is congenital, which means she was born with it. Both of her eyes cross (strabismus). His treatment recommendation is surgery as soon as possible. The earlier we treat it the better her eyes will develop. Makes sense, right?! Except we dive into the deep end right away with surgery, which frightens me.

Doctor number two says she is cross eyed because she is farsighted and therefore her left eye is crossed to help her see up close. He said that this type of strabismus is called accommodative because her eyes are compensating. His treatment recommendation is patching her right eye to help strengthen the left eye and then put her in glasses. Surgery is unnecessary.

Doctor number three said they are both possibly correct. He explained that almost no babies at her age have accommodative strabismus but it is possible because she is so farsighted – about twice the usual distance for a baby her age. However, because she is so farsighted that it could be accommodative since it is unusual at this age. He suspects that it is the congenital type and that surgery will be required but he said that patching plus glasses will help us to know for sure.

So, we are patching for a week (and we have been for already about two weeks) and when she gets her infant glasses we will continue to patch. Then in one month if her eyes have corrected than we do not have to do surgery. She will have to wear glasses until she grows out of the farsightedness, which would happen around 12-14 years old. If at the end of the month of wearing glasses she is still cross eyed than it will confirm it is a congenital issue and surgery will be performed.

Surgery means one of them going in and shortening the muscles that lead to her eyes to prevent them from crossing.

Keep your fingers crossed that her eyes uncross 😉

Below is a photo of our adorable pirate baby! Next week I will share a photo of our babe in cute, lavender glasses!!

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Thank you


Thank you for your comments and support. Most of all, thank you for not being judgmental.

One of the reasons I want this blog to be anonymous is for me to feel comfortable. With only a handful of you knowing me in real life, it makes it easier to share myself and what I’m experiencing without censure.

I am also thankful to those of you who shared that you too are experiencing some of the same difficulties that I am. It helps to know that I’m not alone. That I’m not a weirdo.

Marriage is hard. Caring for an infant and a premature one at that is hard. Combine the two and life becomes extra challenging.

Will MH and I make it through this? I sure hope so. It will take a lot of work on both of our parts but that marriage, right?! With or without the added challenge of a preemie, it takes work.

MH is so sweet. He likes to live in a world where hard things go away once they are said out loud. He thinks that because we talked about it once that it goes away. So not true and I need to help him figure that out.

We got lucky both literally and figuratively today. My dad took Roo out for a walk and it was the first time that we’ve been alone in the house since we left for the hospital. I kind of forced it but I’m glad I did.

I also told him that I’m really feeling angry and resentful and that we need to figure things out. He said that he didn’t know I was still feeling this way about things. (Like I said, he thinks if I mention it once that since its been said that it will go away). I hope that I’m able to help him realize that we really need to work on things together.

I need courage and patience to get through this tough time. I have the courage. But, I lack patience. I need it. I have it with babies and children but I don’t have it for adults. I don’t know how to get it. My lack of patience shows through my tone of voice and it drives MH nuts. Any suggestions on how to keep an even tone when I’m feeling impatient?

Thanks again for being on this journey with me.

Xo

New Way of Life


My life since Roo was born has changed tremendously. Life has changed even from the time she was in the NICU versus when she’s been at home. I don’t know what it is like to have a full term baby and so I’m sharing my experience as a first time mom of a preemie.

When Roo was first born and in the nicu, I spent at least 8 hours a day with her. I would wake up and drive into the city with MH and stay with Roo at least until 1pm. Then I would go home for a nap and them return again in the evening to meet MH and spend a few hours with her again. We would go home and have dinner and then sleep and start again the next day! But, at least I was able to get sleep between pump sessions.

Since she’s been home, my day is even less structured and a whole heck of a lot harder. In the hospital, she had a care schedule that meant she ate every three hours and not a minute sooner or later. Now she eats on demand. When she first got home, we stuck with that schedule for the most part because she did well with that schedule and even though she could eat on demand she pretty much stuck with it. I would pump and someone else would feed her a bottle of my pumped milk with human fortifier. Then because she spits up a lot after eating we have to hold her upright for 20-30 minutes. The whole process took about an hour. I would almost immediately go back to bed and someone else would watch her for me. My body was exhausted from being on bed rest for two weeks followed by the stress of having a preemie in the hospital and, oh right!. I had just given birth!!

Either no one told me or I didn’t listen but the first few weeks/months with a new baby at home is based solely on survival. Helping your new baby survive by feeding her, making sure she is clean and allowing her to sleep. She needs very little else. It is mind numbingly exhausting. I has no idea it would be this hard.

We have left the house with her only a handful of times for pediatrician appointments, a visit to the lactation consultant and for the first time this past weekend for lunch at an outdoor cafe, where we sat very far away from other tables.

We have no routine other than the fact that she eats around every 2.5-3 hours, give or take 30 minutes on either side. Since I started exclusively breast feeding her, it can take a while. She can be a slow eater. That means if she is cluster feeding, she might want to eat every other hour and it might take her 30-45 minutes to eat before starting over.

I don’t get a lot done. In fact, I get very little done. Some days especially in the beginning I don’t even get a shower in. There are some days when I don’t get out of my pajamas.

Roo is now considered full term. That means we can follow the books and she will start to behave like a newborn baby instead of a preemie. I’m looking forward to watching her develop especially as she starts to eat and sleep like a newborn!!

I’m dreaming of the days when she will sleep quietly without being held. I dream of the day when she will be able to lay on her tummy time mat and entertain herself for a few minutes. I can’t wait until she has her vaccinations and we can take her out in public. I can’t wait until I feel comfortable taking her with me as I run errands. I haven’t run an errand since she came home from the hospital – crazy as it sounds I am excited for my new normal to start.

Motherhood is way harder than I thought. I love it though. Today, she and I were snuggling on the sofa and I stared at her in wonder. MH and I made this beautiful baby and I birthed her into this world. She is a little, amazing creature that I worked hard to bring into the world. She is worth every bit of pain and sorrow.

I’m sad we lost our first little one but if we hadn’t lost that one, Madeleine would not be here. And so, I’m reminded that everything – good and challenging – happens for a reason.

My life has changed and it will never be the same but it is better and will only continue to get better as Roo grows up! I’m so excited!!

Update on Supply Issues


It’s been a little more than a week when I talked about my supply issue concerns, maybe longer but my mind is so foggy these days! Things are getting better – kind of – and I thought I’d share what has been working for me.

First, I started to take regularly Fenugreek, which has helped some. I thought that my supply would go way up but it hasn’t. However, I think it has helped my body maintain its supply.

I also started breast feeding more every day. I pump/nurse every three hours and in the past I was pumping while Roo got her bottle. Lately, we’ve been giving her a small bottle with my pumped milk fortified with formula and then I’ll nurse her, and she gets the most of her nourishment from nursing. I’ve been doing this for most of her feed sessions. The longer nursing sessions has helped to increase my supply as it makes as much as she is demanding. The only downside is that she can nurse for 45 minutes, which is tough on my ni.p.ples.

Finally, I’ve noticed that when I skip a pump session and allow someone to give her a whole bottle feed and I sleep. The solid sleep of four hours rewards me with a really good milk result 🙂

Someone suggested oatmeal and I’ve been trying to eat a bowl every morning! It might also be contributing!!

Thanks for the help and advice!!

Xo,
Michelle