Our New Family July 2010

Our New Family July 2010
Our New Family

About our family...

Our family started on June 2, 2000. We have been married 10 years. We have three boys (Drake 5, Warner 4, & Henry). Michael is the Executive Director of Utah Shared Access Alliance (USA-ALL) and a state lobbyist. I am a registered nurse, and a third-year law student at BYU. Drake is starting Kindergarten in the fall, and Warner is getting ready to start pre-school in the fall. Henry arrived July 7, 2010. Henry was diagnosed with Hypoplastic Left Heart Syndrome (HLHS) and passed away, after 32 hours, on July 9, 2010. This blog provided updates on what was going on with Henry, and gives a little insight into our thoughts through the challenges we faced during his birth and death.

Be sure to read "The day we found out our baby has HLHS," under must read blogs, and if you want more info about HLHS there is a link in the right column that is a brochure from Mayo Clinic about HLHS.

Thursday, May 20, 2010

What to expect after the baby is born

Primary Children’s Hospital has connected us to families that have had a child with HLHS. Last week I spoke to a mother who delivered a baby girl with HLHS. I am very thankful for her insight and look forward to speaking with her more. She and her husband chose comfort care for their baby and still remain at peace with their decision to send their daughter home to her heavenly father. I was unprepared to hear that after their daughter was born she lived for 15 days. She was born the end of January and sadly died on Valentine’s Day.

Michael and I have been preparing to say goodbye to our baby at the hospital. We have not prepared anything at our house to bring the baby home. I am not sure how these parents even sleep when they bring their baby home. I will be afraid to go to sleep, I will be afraid to miss his last breath, and I will be afraid to miss the last moment of his life… How can any parent ever sleep when there is the possibility that they will awake to find their baby dead? Can a parent go 15 days without sleep?

Even though it sounds strange that I am concerned the baby will live longer than our stay in the hospital, the death occurring in the hospital creates a separation between the sorrow and our home life. Is it bad that I feel that way? It will unquestionably be more difficult to say goodbye to or little boy in our home, and thereafter there will be so many reminders of him in our home. Memories such as the first time he is carried through the door of our home, his cradle, his blankets, his clothes, and that scent often recognized by mothers of newborns.

How does a parent deal with facing grief through these everyday reminders? After his death, do I immediately hide away everything that reminds me of him? Of course that would not be entirely possible; not all memories can be hidden away. Do I leave everything were it is so that I can cherish his memory for as long as possible? Or will this be too painful? How long do I keep his things? Forever? Will I be able to deal with rediscovering boxes of his belongings months or years down the road? Or do I want to completely eliminate these reminders? Will I create a box of for his belongings that I can easily retrieve and feel and touch so I can relive as much of his life as often as I can? Or will that be too painful? I am afraid of how I will be able to cope with all the emotion…

Monday, May 10, 2010

Michael's Shorter End of the Stick

Last night, after the kids were in bed, Michael and I were spending some time together. The baby was kicking and moving around a lot (a common occurrence - he runs around in my tummy while I try to rest or sleep). I reached out for Michael’s hand and placed it on my tummy. Sometimes I forget that maybe Michael is getting the shorter end of the stick when dealing with the loss of this baby. Every day I get to feel the baby move and I think of him often and Michael does not get to feel the baby move or kick. I could tell as his hand laid on my tummy that this was really hard for him. A thoughtful sorrow enveloped his emotion as he continued to feel our baby move inside my tummy. It is now only a few weeks until we get to hopefully hold our baby, but also only a few weeks away until the baby stops moving, stops growing, stops living. It is difficult for me to witness my husband, a father, deal with the fact that he only has a few more weeks to feel the movements and enjoy his baby son before he is taken from us.

Sunday, May 9, 2010

The "Mad Phase"

For the last few weeks, I have been struggling through the “mad phase” of grief for the loss of our baby boy. There are so many things to be mad at, myself, Michael, The Church, etc. Be sure to read through to the end of this post because the end of this post has a lot more positive things.

We have figured out that BYU’s Student Insurance is a joke. If you find out that you have anything beyond bumps or bruises then it is not covered. In addition, the maximum out of pocket per individual is $7500 ($7500 for me, and another $7500 for the baby). This means that the student consistently pays their 20% until they have expenses totally over $37,500. Then it pays 100% up to $130,000 total (only $130,000 for both me and the baby). Before the insurance pays 100% we must pay $15,000. Oh, and that is if our providers are approved providers. If they are not approved providers - which some of the surgeons, cardiologists, and perinatologists helping us are not – then we have to pay 100%.

First, I feel like writing to the General Presidency of the Church. Are they aware that the school is requiring such a pathetic insurance? Are they aware that a student could get a plan with much better coverage (like $1,000,000 cap per person, and $1500 annual maximum out of pocket per person) for only $20 - $50 a month more? The BYU students are being taken advantage of. Basically the insurance plan covers routine office visits for coughs, sniffles, and flu like symptoms. If you are a 28-year-old father of 4 finishing a MBA and you find out you have leukemia (I had a patient with this exact circumstance) then you can just plan on dying because the health plan provided by BYU is pathetic. I don’t think most BYU Students are aware of this because (1) they don’t think their own religion would put them at such great risk, (2) the premium amount suggests a much better plan coverage comparable to other plans in the same price ranges, and (3) a student would never guess that there is even a plan that is so limited, so pathetic, and covers so little for that price. I pay over $109 a month for my BYU plan; I could have purchased a plan through Select Health for $125 - $150 a month with $1,000,000 cap, and max out of pocket of $1500. Who would think your own church or a religious school like BYU would rip off their own members/students in such a disgusting, unethical, and down-right evil way?

Second, I feel ripped off again because I have to work through an entire pregnancy, watch my belly grow, feel the baby move, and then I only get to spend a few hours with him before he passes away. I don’t think I have every paid a higher price for anything in my life; 9 months of my body working 24/7 for a few hours of time with my baby. And on top of that I get to pay over $15,000 for medical expenses and another $7000-$10,000 for funeral expenses. I would not be complaining at all if I got to take the baby home. Really, $25,000 for a child does not even seem like that much – obviously couples pay much more to conceive a child. But, I don’t get any of that.

Third, I am mad at myself. What did I do to deserve this? I have always told myself that nothing like this would happen to me because I could not handle it. Well, this is what life has dealt me, and yes, sometimes I am a baby and sometimes I don’t deal with it well. In addition, I think of things that maybe I have done to put the pregnancy and the development of the baby at risk. I wasn’t taking prenatal vitamins when I got pregnant… I was taking a sleeping pill prescribed by my doctor during the first 8 weeks of pregnancy… I don’t always eat that great… I probably used Ibuprofen a few times during the first 8 weeks… I drink Coke…

Last, I think it is easy to be mad at everything and everyone. I am going to try harder to look at the positives. I am trying to look past the heartache at the many blessings this struggle has revealed to me; blessings that are for my family, my marriage, and strengthen my testimony of the gospel. Specifically my testimony of the sealing powers that have been restored to this earth that guarantee I will be with my family for all time. I must remember to ponder, pray, and ask my heavenly father to remind me of all of the wonderful blessings that I have received. I have gained a greater appreciation - and cherish even more - my relationship with Drake & Warner as well as the opportunity I have to be a mother of two beautiful and perfect children. My Heavenly Father has given me this opportunity and I am going to strive to be a better mom.

It is easy to see how a person could become bitter while going through a challenge like losing a child I pray that Michael and I do not become bitter…

Saturday, May 1, 2010

Michael - "The Chef"

The weather has got us all a little down. So we decided to add some pretty floral arrangements to our house to make it feel a little more like spring (since the weather is not cooperating). We are ready to do a little work in our backyard, but the weather has not been good enough to plant any of our flowers or start or garden. I look forward to warm evenings on the patio, candle light, and Michaels great BBQ food.

Michael is really becoming a great cook. He has pretty much taken over the cooking in our house and prepares about 80% of the meals. Thank goodness because I could live off canned soup and peanut butter and jam sandwiches. Michael is saving our family from my tolerability of cheap, plain food. Who needs to spend all that money and time on food when it's just as easy to heat up a can of soup? But, when you have gourmet food that is prepared and displayed before you how can you resist?

Hopefully, soon, you all get to try some of Michael’s yummy cooking. Besides my Mom’s home cooking, and Grandma Swenson's home cooking, I have never had food as well prepared as Michael’s. His cooking surely competes with the likes of Market Street Grill & the Foundry Grill. He just has a gift for identifying flavors and choosing quality products to make outstanding cuisine.

"Write On" Complete

I finished the "write on" case note and technical edit and turned it in at the law school yesterday at 4:45 p.m. (it was due at 5:00). Yes, it is done... And now I can do something fun, and maybe work a few extra shifts at the hospital. If you would like more information on the write on check out my blog "Writing with Diligence." I talk about the write on specifics a little more.