Special Needs and Chlorophyll Have A Lot in Common

With a title like that, you must be thinking I’m sleep deprived and in some sort of depressive state since the sun doesn’t seem to shine anymore in Minnesota (and you might be right). You may also be thinking that mine isn’t the leading science mind and wondering what I could possibly know about chlorophyll (and you might be right).

Fortunately, Kristi over at Finding Ninee has a place called Our Land. It’s a land where empathy and wonder prevail. In a place like Our Land, me talking plant biology and special needs parenting all in one post suddenly makes sense…please read Why Special Needs is Like Chlorophyll and let Kristi know I sent you.

If you’re not already following Kristi, it’s a great time to start. She’s a blogger extraordinaire that I’m happy to call my friend.

Speaking of special needs parenting, I found this gem on Instagram on SpecialSiblings thread. Pretty awesome, isn’t it?

 

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The Infertility Heartache: Dawn’s Story

I’m really pleased to share this guest post by Dawn Tautges Running, a high school classmate of mine who is in the midst of her struggles with infertility. I know there are many readers who have had a similar journey who will relate to Dawn’s story and for those of us who didn’t have infertility as a struggle, there are is a great lesson to learn, and I bet, you’ll have other ways you relate in your own life.

Hello ANRC Readers!

This week is National Infertility Week. When Tatum first offered to let me do a guest piece on infertility, my first thought was hell no. I had two reasons. One, I’m nowhere near the eloquent writer that Tatum is and two, we know quite a few of the same people and I wasn’t sure I wanted a lot of people to know that my husband and I are having problems with fertility.

But isn’t that exactly what this week is about? Improving the public’s knowledge of infertility and trying to get rid of the stigma that seems to follow those of us dealing with it. 10 to 15% of couples experience infertility meaning that they’ve been trying for a year without success or for 6 months if over 35 years old. About 1/3 of the time it is female infertility, 1/3 male infertility and the other 1/3 is either a combination of the 2 or unexplained. We have been trying for a year and a half and even though I was 35, we had to wait until we got married to get health insurance that would cover going to a fertility specialist.

One of Tatum’s posts spoke of things people say to families with preemies and how even though they probably don’t mean to be, it comes off as insensitive. Those of us that have problems with fertility get the same thing. My personal favorite is being told to just relax or stop thinking about it and trying and then we’ll get pregnant. And all I’m thinking when I’m told that is if that’s all it took, we would have gotten pregnant in the first 6 months we were trying. And it’s impossible to stop thinking about it when you want something so badly and it seems like every other day there’s another announcement on FB of somebody else being pregnant. Although I’m extremely happy for those that God blesses with a child, it feels like I’m being stabbed in the heart every time I hear of another woman I know achieving pregnancy.

I belong to a infertility forum and one of the threads on there is “infertility is”. Here are some of the things women have posted:

“feeling alone”

 

“wondering what we did to have to go through something so horrible”

 

“crying like a baby every month when you get your period yet again”

and the list goes on and on.

There have been times as I’m driving to work in the morning where I am literally screaming at God asking “why?” Why us? There are people out there that should not have children, who abuse them and hurt them and then there’s us, both with good paying jobs and a warm house with plenty of love to give. However, as I’m screaming at Him, I am also doing my best to keep faith in Him, knowing that it will happen according to His plan. I just hope that His plan has it happening soon.

If we don’t conceive naturally this cycle (I’m in that dreaded 2 week wait) and I’m not expecting to, we will begin IUI next month. IUI should eliminate the problems that we know of that our causing our infertility so I’m hoping and praying that it works. There is still only a 20% chance though and we only get to try 3 times before moving onto IVF or adoption.

More than likely, you, or someone you know has dealt with, or is dealing with infertility. I know that this is usually a situation where you just don’t know what to say when you find out that someone is dealing with it. My advice, just give them a hug and tell them you’re there for them if they need to vent. Please don’t tell them to just relax and it will happen!

We are lucky enough to have a strong support system in our families and close friends, (I know many don’t have even that) but it’s also sometimes hard to look at my 2 sisters with their 9 kids put together. If any of you reading this are dealing with infertility, know that I’m praying for us all to have our miracle baby one day!

Thank you Tatum for letting me get my feelings and thoughts about this subject out instead of holding all of it in!

Shortly after getting the early read of Dawn’s post, I saw this Q & A from Carolyn Hax, about why “Just Relax” is a “thoughtless” reply. It is a great reinforcement to Dawn’s comments above.

Thank you, Dawn, for your courage in sharing your story. I know you’re going to touch people today who needed to hear it.

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A Zebra Story

I’ve already posted on Facebook that I wasn’t going to post today.  Truth be told, I had started a post about love (being Valentines day) while Owen was napping, but kept having computer troubles.  My system shut down on me six times during the first paragraph.  When Owen woke up after only 30 minutes; I gave up.  Maybe it was meant to be, because I just checked my email before starting dinner and found this note from a family friend.
On this Valentines day, I’d like to share this beautiful love story.  I’ve deleted a few items to give anonymity.
Dear Tatum & Kyle,
After reading about your connection to the zebra, I had to sit down and share our very special zebra story.  In early 2000, David and I  had our blood tested for possible matches for the National Bone Marrow program.
In 2002, David learned that he was indeed a perfect match for a 9-year-old girl named Emily from San Jose, CA.    She had been diagnosed with cancer when she was about 12 months old so never really knew a day not being a cancer patient.  She actually learned to walk using the IV stand.  In May, we were at the U of MN for the harvesting of David’s bone marrow.  After the procedure, his bone marrow was flown to the hospital where Emily was ready for the transplant.  It was a success!
A year later in June, David and I were invited to go to be guests at Emily’s 11th birthday celebration.  Actually, meeting David was  Emily’s big birthday surprise . . . we won’t ever forget her Dad introducing the two of them in front of 30 or so very special family and friends of this special little girl.  She literally flew across the room and into his arms . . . many tears of joy in the room that day!
Among the many special moments we shared with her during that trip was our tour of her bedroom ~ a more apt description would be the Zebra Room.  It was filled with every conceivable type of zebra you could imagine and we learned just how meaningful the Zebra was to our little Emily.  It was her focus and support during many long and difficult days . . . she loved her Zebras and was very proud as she showed them to us.  One that was with her front and center was named Dory ~ we were honored and humbled to learn that the name was a combination of David and Lori.  Emily was blessed with a wonderful family, amazingly loving parents and two adoring sisters not to mention grandparents, aunts and uncles.  There was much love in that house during our visit and we were so lucky to be a part of it.
Sadly, Emily passed away shortly after our return to Minnesota.  We learned of her passing while we were at our favorite spot in the world, XXX Lake.  We were told of the plans for the memorial service . . . a letter from David was read by a close family friend as the eulogy and the gathering ended with Emily’s favorite treat for all ~ root beer floats.  At the same time that was taking place in California, our family went to our special island with a cooler filled with root beer and ice cream and toasted Emily.  We shared that picture with her family and felt it made us a bit closer to her and all of them.
I’m sure that you can understand why the Zebra ornament given to us by her family is always front and center on our Christmas trees.  What a wonderful gift David gave ~ they had one more year with this precious little girl!  Isn’t it so true that the true blessings in life are the gifts we give?  Our gift in return was Emily and a spirit that will live on in our family as well as hers.
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I’m really not the biggest fan of Valentines day.  However, I’m a true believer in love.  This story is just that; a great example of love.  Instead of a Happy Valentines day, I’m wishing you all love.
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If you don’t know my connection with Zebras, here is the post.
If you’re not on the Bone Marrow registry, it’s easy to sign up at Be The Match.

March of Dimes Lobby Day – 2013 Recap

Friend and fellow Amplatz Preemie mom, Rebecca Michael participated in the Minnesota March of Dimes Lobby Day on January 15. Not being able to go, I was curious to what was involved and her perceptions of the day, so I was thrilled when she willingly wrote about her experience.

20130122-115811.jpgOn January 15th, I had the opportunity to participate in March of Dimes Lobby Day at the Minnesota State Capital. What a great event! It was awesome to be able to advocate for mothers and babies in front of the legislators that represent us.

A little background on my family: after a healthy, full-term first pregnancy, our daughter Madilyn was born in February 2009. Two years later, my husband and I found out we were expecting again – baby due in November 2011! Little did we know that Emma would be born in July at only 23 weeks gestation. My water broke spontaneously (also known as PPROM – Preterm Premature Rupture of Membranes) at 22 weeks/3 days and after 5 days on hospital bedrest Emma showed up kicking at 1 lb, 6 oz and 11 ½ inches long.

Lobby Day started with lunch next door to the Capital. It was so exciting to put names to faces for folks I’d met through the March of Dimes and it’s always great to connect with other families that have had premature babies. We had a quick run-down from Phil Griffin (MOD Lobbyist) about how the day would flow and the specific recommendations for which we were lobbying:

  1. New tests to be added to the newborn screening – SCID (Severe Combined Immune Deficiency – aka “bubble boy” disease) and CCHD (Critical Congenital Heart Defects). With both of these disorders, early diagnosis is the key to treatment.
  2. Legislation to extend the Minnesota Task Force on Prematurity through 2015. This task force “is directed to evaluate and make recommendations on methods for reducing prematurity and improving premature infant health in the state.” (MOD Brochure) For obvious reasons, the more we know about prematurity, the more we can try to prevent it and/or more effectively treat premature babies.

Once we arrived at the Capital, we watched as the March of Dimes honored Dr Ed Ehlinger (MN Dept of Health Commissioner) with the 2013 Champion for Babies Award. Then, it was off to the races!

Of the roughly 50 people who attended, we were broken down into five groups to meet with individual legislators. This was my favorite part of the day – getting to talk to the Senator of my district about issues that are important to me. I was a little nervous at first, but our group leader reminded us that our legislators are people – just like the rest of us. It’s our job to tell them about issues close to our hearts (even if we didn’t vote for them)! In all, I told four different legislators about Emma’s story – our fear about how any baby can survive at 23 weeks, about spending 133 long days in the NICU, about infections and exams and xrays and ultrasounds. Most importantly, I shared how Emma literally wouldn’t be here if it wasn’t for the March of Dimes – they created surfactant, which is a substance that helps coat the lungs of infants in respiratory distress. They also developed nitric oxide therapy, which was another intervention to help Emma’s lungs.

As someone who has never spent much time in politics, this was a fun and easy way to get involved and advocate for babies! The girls and I had a great time and are definitely looking forward to doing it again.

Click here for news coverage of lobby day.

Volunteers with Senator Melissa Franzen

Volunteers with Senator Melissa Franzen

Lobby Day Group

Have you attended a Lobby Day for March of Dimes? How was the experience similar or different? I hope Kellen, Owen and I join you next year, Rebecca! Thanks for sharing and for speaking up for all of our babies.

Coming to Terms with the Pump – Joanna’s Story

I have asked my friend, Joanna, to share her journey with providing breast milk to her son, Isaiah because I think the symbolism of control is one that all preemie parents will understand.  Also, I love how she openly discusses the trade offs of the decisions that all parents face.  Her efforts were truly heroic and as you see how hard she worked for her liquid gold, you’ll understand all the more why it was so loving and generous of her to share some of her milk with Owen when he needed it most.  For her selfless gift to Owen, she was featured as the August Hero of the Month.  Thank you, Joanna, for your inspiring and honest story.

There were two things I knew for sure when I was pregnant; I was going to have a natural delivery and I knew I was going to breastfeed until my child self-weaned. When I went to the hospital at midnight on the day I was 29 weeks pregnant, I did end up getting one of those two things right. I had an unmedicated delivery that very evening, because the hospital didn’t realize I was in labor until they could feel a head. (That’s a whole separate story though!)  My dreams of snuggling my baby and breastfeeding at birth were soon replaced with watching them try to intubate my son and get him breathing and stable enough for transfer to a hospital that could handle his critical care. Thanks to a good nurse, four hours later, I was being driven to the  hospital where my 2 lb 11oz son, Isaiah, was in the NICU fighting to live after 2, 2 and 2 APGARs.

Walking into the NICU to see my son for the first time since the brief kiss goodbye, the last thing I was thinking of was breastfeeding. In fact, it was almost 24 hours later, before a lactation consultant arrived in my room with the awkward yellow contraption that would soon be my most hated best friend. The first pump, I believe, I got 5 mL total. It was hard to keep such a strict pumping schedule of every three hours, and eventually every two hours, around the clock but I told myself, if I was breastfeeding and he was home, I would have been up just as often.

Each day, as my son struggled to breathe and grow, I struggled to pump more liquid gold. When he finally got to have a few precious mLs in his Nasal Gastric (NG) tube, and was able to digest it, my heart filled with joy. I was getting an average of two ounces each pump, which didn’t feel like much when I’d see other Momma’s bringing in two or three full eighty ml bottles after a pumping session. Yet, my two ounces were way more than his little body could handle at that point, and I continued on my pumping schedule and  began to build a small store in the freezer. As Isaiah’s NICU journey continued, we took our steps forward and then back.  Pumping felt like the only thing I could control. I couldn’t regulate his breathing or his heart rate, but I could give him something I felt would help him grow.

As is typical with extreme preemies, at some point human milk fortifier (hmf) was added to my breast milk for extra calories.  Formula, even as a fortifier, had not been in my plan, but neither had having a baby 11 weeks early.  The ultimate compliment was when his nurses would comment on how hard it was to mix the hmf with my creamy (read: fatty! Yay!) breast milk and then Isaiah gained a pound (of good weight) in one week around two months actual age. His weight gain was all I needed to  convince the doctors that he didn’t need to be fortified and they agreed to give it a try.  Getting him off formula was a big boost to keeping up my pumping schedule. Small wins were important to keeping me on pace to achieving my goal; giving Isaiah breast milk until he’s ready for whole milk.

Around that same time, I was first allowed to try to breastfeed Isaiah. It was a very frustrating experience and not at all how I expected. Not only was he overwhelmed, but he just didn’t have the strength to suck hard enough the few times he was able to latch. It made me sad to see him work so hard, to only see a two mL gain on the scale after twenty minutes of sucking. Then, when I would just want to kangaroo with him, I’d have to put him back in his crib long enough to pump, so I wouldn’t lose the small progress I had made in my supply. Eventually, after a small breakdown with one of his core nurses, I decided to work more on breastfeeding later at home and concentrate on pumping, and bottling while in the NICU. It relieved some pressure on me and Isaiah and I could still comfort myself with the fact that he was getting my milk. Pumping was still the one place I felt in control. I couldn’t get him to coordinate breastfeeding, but I could still provide the milk.

After 83 days, we finally heard the ‘H’ word. What I expected to be pure bliss was also a set of new challenges.  At home the struggle with pumping became even harder. Waking up to feed a baby, who much preferred to be on his own schedule and not a NICU dictated one, then pumping, cleaning pump parts and trying to still get the sleep needed to keep my supply was comparable to a tightrope walk.  Get enough sleep, get enough pumping, get enough water and don’t forget being the main caregiver to a medically fragile newborn.  It was a difficult balance; I was determined to not lose control.

Eventually, I did get a routine that made it slightly easier, especially when I figured out a way to pump, both sides, and bottle feed Isaiah, simultaneously. Even still, most days, I was too overwhelmed to try to bring him to breast, and when I did and he screamed in frustration; I gave up. Could he have figured it out if I had devoted more time to it? Possibly.  Some preemies do. Honestly though, most days, it was hard enough to just keep pumping. I already wasn’t getting my dream of breastfeeding until he self-weaned.  I had to keep my focus on reaching his milestone of transitioning to whole milk.

One might think, my supply would have increased from those earliest days in the NICU with my continued strict pumping routine.  However, even with pumping seven or eight times a day,  I was only making an average of sixteen ounces. Isaiah has never been a big eater, and often his daily average intake was the same. On his better eating days he would drink as much as twenty ounces and I’d have to dig into that small stash remaining from the NICU. I sometimes wondered if it was okay for Isaiah to eat so little.  Like most moms, I couldn’t help but compare.  I knew his volume was a lot less than many others and he is small, even compared to his preemie peers, but his doctor was always ok with Isaiah’s size since he kept to his growth curve.  Admittedly, I never pressed the issue, because I really didn’t want to supplement with formula. To me, it was not an issue of formula being bad, it was that I knew if I had to supplement, it would be hard to find the reason to keep going with the pumping.

As we approached Isaiah’s first birthday, it was clear he would either need to stay on breast milk, whether freshly pumped or frozen, until at least one adjusted.  At that point, I did start giving myself a little leeway, and slowly cut out the middle of the night pump. Unfortunately, even pumping six or seven times during the day wasn’t enough to maintain the same supply. I was quickly down to about twelve ounces a day. As a result, Isaiah began getting a combo of fresh and frozen. Just after thirteen months, or ten and a half corrected, I had reached a point of fatigue and had a little breakdown with Isaiah’s doctor. She assured me that I had done a great job and it was ok to stop pumping. She made it clear, that with Isaiah’s continued slow weight gain, he was still going to need formula well after his adjusted birthday. As I saw my goal of exclusively using breast milk until he was ready for whole milk slipping further away, I slowly came to terms with not meeting my goal. Even still, I couldn’t stop pumping cold turkey.  Given my supply it probably wouldn’t have been painful but I wasn’t ready to completely walk away from pumping yet.  At first, I went from six pumps to three. Those first couple days, my supply didn’t take much of a hit and I had a little hope that I could keep up that schedule. That hope faded fast, it was not much longer before I was making only 6 ounces or less in those three pumps. The supply in the freezer was dwindling fast and with just weeks to go before his adjusted birthday, I finally stopped pumping altogether.

What I felt after stopping surprised me; the freedom was exhilarating!!

I am really proud of the milk I was able to give my son and I believe it was the best thing I could do for him.  At the same time, I can’t say it didn’t come without consequences.  Before his birth, I was the nanny who didn’t believe in letting kids watch TV. I quickly became the mom who plopped her son in the bouncer, and then the exersaucer, in front of Mickey Mouse Clubhouse, just to be able to pump. I had been so exhausted all the time.  In hindsight, I think it was more mental than physical exhaustion. I hadn’t realized how much I was missing out on by constantly being connected to a machine instead of my son.  Suddenly, I could take Isaiah for walks without worrying about when to be back to pump. As he became mobile, I was able to play with him and chase after him on the floor.  By no longer doing the one thing that I always felt was most important, I was able to, in other ways, enjoy parenting so much more. Looking back now, I’m not sure why it was so important to get to that goal. To prove a point, to myself? Family? I always had plenty of supportive people to lean on if I had decided to stop. Did I make the right decision?

Let me be clear, providing breast milk was important to Isaiah, and I don’t regret that decision in any way. Isaiah didn’t get his first cold until his birthday party; I’d like to think my breast milk had a little something to do with that. But, the length of time that I pumped will always be a small “what if” for me.

Would I have felt like I spent more time with Isaiah if I had quit earlier? Maybe, but a dear friend pointed out recently that there would have been other things demanding my attention that I could still look back on and feel had kept me from spending as much time with him as I’d have liked.

Would he have grown bigger, faster? Again, maybe, but as slow as it may be, his doctors are happy with his growth and he’s making great developmental strides.

In the end, I can’t say I made the right or wrong decision. I only know I made the decision that worked for me and Isaiah.

By the way, it turned out that I did have enough frozen breast milk to make it to his adjusted birthday.  I still struggled with the idea of needing formula after all my pumping, but Isaiah solved that dilemma. He refused to drink even 10 mL and shivered like it was torture, but he gladly sucked down enough whole milk to keep growing.  So in the end, even when I thought I gave up early, I did reach my goal.  It wasn’t easy, but I know I’m doing my best as Isaiah’s mom.

 

Joanna, Rich and Isaiah