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.