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.

Wednesday, July 14, 2010


As I was being discharged on Sunday my blood pressure started to creep up a little. I did have post-partum preeclampsia with Drake, but my blood pressure shot up within one hour of delivering him by C-section. On Sunday I did have a bit of edema in my legs and feet, but my physician thought that my body would diurese this fluid naturally and there wouldn’t be any problems. Yesterday, I had a pulsing/pounding headache and a little anterior pain just below my right ribs. These are classic signs of high blood pressure. I thought maybe I should go to the ER, but I talked myself out of it. Meanwhile, my legs feet and the rest of my body keep getting bigger with fluid retention. I weigh like 180+ pounds; that’s more than when I was admitted to the hospital before my C-section with Henry.

Finally, I gave in to my instincts and called the doctor and went to the BYU Health Center to have my blood pressure taken (can’t find my own blood pressure cuff). My blood pressure was 148/100. Michael drove me to University of Utah Hospital and we were taken to an observation area in the Labor & Delivery Department. After monitoring my blood pressure and doing some labs the chief resident decided to admit me.

As the admission process was taking place, Michael and I informed the physician that Henry’s graveside service is taking place at 11:00 a.m. the next day July 14th. She informed us that they never administer magnesium sulfate IV therapy for less than 24 hours. Of course, Michael threatened to yank me out of the hospital right then, but there is a real serious risk of stroke or seizures with preeclampsia (yes, most people are not aware that a woman can get post-partum preeclampsia). The physician compromised with us and said that in the morning they would evaluate my blood pressure and status during rounds and determine if they could let me attend the service. Michael had his own plan the entire time, and I bet you can guess that it was to drag me out of the hospital in the morning whether the physicians gave their o.k. or not. They call that AMA – leaving against medical advice; usually not a good thing.

The night was miserable; magnesium sulfate makes the patient really sick and really weak. On top of the magnesium sulfate they gave me some compazine, which made me crazy. Thankfully, after a miserable night the physicians did decide that they were going to release me. Michael was there right at 8:00 a.m. and we had just finished the discharge paperwork and I was getting dressed. We sped out of the hospital and into the car and home so that I could get ready for Henry’s graveside service.

Before leaving the hospital the physicians warned me of the risk that I was taking by leaving the hospital early and by not finishing 24 hours of magnesium sulfate. The risk is a 20% chance of stroke or seizures. I knew that I could not miss Henry’s service, and it would be terrible to move the date, and impossible to notify everyone who was planning on attending Henry’s service. I had to have faith that Heavenly Father would help me keep calm and my blood pressure would continue to go down as it had during the night at the hospital. One real positive thing that happened at the hospital is I diuresed over 4 Liters of fluid. I bet I weigh at least 12 lbs. lighter today than I did yesterday.

Sunday, July 11, 2010

Henry Michael Swenson was born July 7, 2010 at 3:29 p.m. weighing 6 lbs. 9 oz. and 20 in. long. Our family was given the gift of spending 34 beautiful hours with Henry. We have been given the knowledge that Henry is a choice spirit who has a special mission to fulfill. Our testimony in the assured salvation and exaltation of infants has lightened the burden of losing our infant son. We understand that our sacrifice will allow Henry to accomplish a special mission for our Heavenly Father that will bless many other spirits.

On July 9, 2010 at 12:15 a.m., after struggling for many hours and being comforted in our arms, Henry returned to his Heavenly Father. Michael and I would like to invite all of our friends and family to celebrate Henry’s life at a graveside service on Wednesday July 14, 2010 at 11:00 a.m. at the Spanish Fork City Cemetery.

We cannot thank our family and friends enough for the loving thoughts, support, and prayers. The fasting and prayers of our family and friends helped us make the hardest decisions of our lives. In addition, the support we have received has significantly reduced our grief and burden of loss.

Friday, July 9, 2010

Henry Michael Swenson is Born

Henry Michael Swenson was born July 7, 2010 at 3:29 p.m. weighing 6 lbs. 9 oz. and 20 in. long. Everything went as planned and our family spent 34 beautiful hours with Henry. A little after midnight and after many hours of fighting Henry returned to our Heavenly Father. What an amazing gift he was and is; it is hard to believe that a mother’s love can grow so quickly and be so strong. The pain is greater than any I have ever felt. I am still unsure that I will be able to bear it, but I would choose to do it again just to spend a few short hours with my sweet baby Henry.

Wednesday, June 30, 2010

C-Section Date Set

It is officially set. I will be delivering Henry at University of Utah Hospital on Wednesday July 7th. I hope to make final arrangements in the next week, and prepare myself physically and emotionally for that day.

Tuesday, June 29, 2010

Meeting Our New Perinatologist

We met with Dr. Byrne today. She is a perinatologist at University of Utah Hospital. She has agreed to deliver me. I was surprised at how much I liked her. She exudes confidence and authority but at the same time treats me like I am not an idiot. It is always frustrating when the Dr.’s talk to me like I am in Kindergarten. That’s why I fired the last perinatologist Dr. Gainer at UVRMC. Dr. Byrne specializes in fetal anomalies.

While talking to her and reviewing my medical history, previous pregnancies, and records and ultrasounds from this pregnancy she discovered that the placenta is anterior and covers my previous C-section scar tissue (which I had realized when I had my 23 week ultrasound). I was impressed that in such little time she made this discovery and instead of messing around trying to figure out what she thought my due date was she actually performed her duties and uncovered something that could result in significant complications. My last perinatologist could not even figure out my due date (even though several ultrasounds coincide with my very accurate calculation).

Dr. Byrne ordered an immediate ultrasound to determine if the placenta was going to present a problem. She also informed us that there is a possibility that I have a placenta accreta. Placenta accreta is a severe obstetric complication involving an abnormally deep attachment of the placenta, through the endometrium and into the myometrium (the middle layer of the uterine wall). There are three forms of placenta accreta, distinguishable by the depth of penetration.

The placenta usually detaches from the uterine wall relatively easily, but women who encounter placenta accreta during childbirth are at great risk of hemorrhage during its removal. This commonly requires surgery to stem the bleeding and fully remove the placenta, and in severe forms can often lead to a hysterectomy or be fatal. Placenta accreta affects approximately 1 in 2,500 pregnancies.

Mine is not an obvious accrete, but it is common for the placenta to attach to the previous C-section scar tissue. The scar tissue is not vascular and obviously the placenta is highly vascular causing the placenta to grow deeper into the uterine wall in search of the blood supply that it needs.

Dr. Byrne believes that she will be able to go below the old scar line and we won’t have to do a midline incision, but we will have to wait to see about the placenta accrete until delivery.

Dr. Byrne is arranging the date and time for the C-section and will get back with us.

LDS.org - Relief Society Chapter Detail - The Salvation of Little Children

LDS.org - Relief Society Chapter Detail - The Salvation of Little Children

Saturday, June 12, 2010

Meeting A Family Who Chose Comfort Care

We met with the Carbon’s to talk about their daughter Elizabeth born in January 2007. Elizabeth was diagnosed with Hypoplastic Left Heart Syndrome (HLHS) just like our baby. The Carbon’s chose comfort care and it was very helpful to talk to them about why they made the decision and the effects of that decision.

As we spoke to the Carbon’s the weight of their grief fell upon me. After more than two years the sadness that exists in their life is still overwhelming. This couple seems to be a very spiritually in tune couple that believes the decision they made was absolutely the correct decision for their family; even with that conviction and resolve in their decision there is much grief and sadness. Their grief and sadness felt to me like despair. I am fearful of the same fate in my household. Will the sadness of losing a child seep into my home? Will the sadness cloak and overshadow all other joy or happiness that could take place? The thought of being so sad for so long is very frightening.

The Carbon’s helped us understand details about the birth and the short life of an HLHS baby which has further prepared us for Henry’s birth. They also informed us of what to expect with hospice care. They talked about how their two older children dealt with the death, which gave us insight into what to expect and how to help Drake and Warner deal with the loss of their brother.

We are planning on Henry coming home with us from the hospital. The Carbon’s baby, Elizabeth, lived 15 days, and sadly she died on Valentine’s Day. How can something so tragic end even more tragically. Forever Valentine’s Day, at least for their family, will be a time of sadness instead of a time to express love. Today I am 90% for comfort care.

Thursday, June 10, 2010

A visit to Primary Children's Hospital

We met with the palliative care team at Primary Children’s Hospital. I am impressed with the time they gave us and the genuine concern that they have for our family and the difficult decision that we are making. The team consists of several professionals including the fetal heart coordinator, a pediatric resident, Chaplin, nurse practitioner, and social worker. The team spent 2 hours with us discussing some of the challenges with the decision we are making. I am thankful that they are so interested in the reason that supports our decision. At first glance a person might be offended by this, believing maybe that they are questioning the reasoning, but really they want to understand why we made our decision so that they can further support our choice through the care they provide before and after the birth of our baby. At the completion of this meeting Michael is about 90% in favor of comfort care and I am about 80% in favor of comfort care.

While we were at Primary Children’s Hospital we also got to meet with the pediatric cardiologist. We met with a different cardiologist and I liked how she interacted with us better than Dr. Menon. She answered many questions. Its interesting how one question leads to another question and yet another… One of my biggest concerns about doing the surgeries is the chance of mental disabilities. Having a child with a physical disability like HLHS is hard enough but I do not want to inflict the pain and suffering of this physical disability on a baby/child if they are also going to have to endure a mental disability. The cardiologist told us that the chance of a severe mental disability is unlikely. This helped relieve some of my concern, but also it created more internal conflict about which decision to make. At that point I was about 60% in favor of comfort care.

We also visited the cardiac ICU and an HLHS baby that was born just a few days before. He had undergone the Norwood procedure about 48 hours before our visit. Seeing him lying in the warming bed was not too shocking for me (since I have worked in the ICU with all the monitors and IV’s and lines etc), and Michael even seemed to handle it well. The baby was still intubated and on a ventilator, he had 8 IV pumps/lines attached, I am sure some antibiotics and others were medications to control his heart. He also had an arterial line, central line, 3 chest tubes, and Foley catheter. In addition his chest was still open and will stay open for a while longer until the swelling goes down so not to cause compression of the heart when closed. You can imagine, very little of the baby actually showed underneath all of these lines and equipment. In some ways I think that Michael dealt with the sight of this beautiful baby attached to so many scary lines and equipment very well, but I think that’s because he does not believe that our baby will ever be in that condition.

As you can see our decision is tortuous and my conviction in comfort care does waiver a bit; although, I have never leaned towards doing the surgeries.

Tuesday, June 1, 2010

Meeting an HLHS 3-Year-Old

Michael and I finally had the opportunity to meet with a family that has a 3-year-old with HLHS. The Shumway family lives in Provo and they have 7 children total. Timothy, who has HLHS, is the youngest. Interestingly enough the Shumway’s brother, Doug Shumway, is a 3L at BYU Law with me. We met at their home and were privileged enough to visit and interact with Timothy. The Shumways were so kind and open about the experiences they have had with Timothy both before his delivery, throughout the surgeries, and up to his current condition. I am very thankful for the willingness they had to share their very private, personal, and emotional experiences with us.

There are several significant advantages that they have over us. First, Kathy, Timothy’s mother, is a super mom; she is a much stronger individual both spiritually and temporally than I am. This attribute has dramatically impacted the success that Timothy has had throughout the first 3 years of his life. In addition, Timothy’s father is a professor at BYU, and through his employment has financial stability and exceptional healthcare benefits.

It was amazing to meet Timothy and discover a 3-year-old who ran, played, and even jumped on the trampoline with Drake and Warner. Besides his faint sterna incision scar, he is a normal 3-year-old. Actually he is developmentally advanced for a 3-year-old.
Kathy shared with us many things including her thoughts and struggles through each of the surgeries, how Timothy coped with each of the surgeries (both mentally and physically), and how the family coped with having their mom away from the home so much. In addition, she shared photo’s from the surgeries and hospitalizations; she even shared the itemized hospital bills for each of the surgeries.
There is one statement that the Shumways shared with us that pinpoints the decision that every parent having an HLHS baby must decide. Kathy said, “You have to be prepared to deal with and accept the very worst HLHS situation that could happen.” They decided that no matter what condition Timothy ended up in, whether he died during the surgeries, lived until he was 20, was mentally/cognitively normal, or if he had severe mental delay, they were prepared to accept the circumstances.

Obviously this is where the similarities in our decision end. Michael and I agree that we do not want to go through the struggles associated with the surgeries to have our baby die at 2 weeks, 2 months, or 2 years. We do not want to see a young child deteriorate knowing every day that their condition gets worse. Even though dealing with the death of a child results in extreme sadness and heart wrenching grief I choose that over looking into the face of my 5-year-old and seeing the recognition and realization in his eyes that he is dying. Furthermore, we do not want a child to have to live and suffer through the surgeries and then have to deal with mental or physical handicaps.

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.

Tuesday, April 27, 2010

Winter Semester Ends & Summer Begins

Last Thursday was the last day of finals. I made it through law school finals for the 4th time... Well I physically made it through but we will have to wait until June to see what my grades are.