The Reason

This blog was started as a way for me to record our, my daughter Luisa and our family's, journey with Amniotic Band Syndrome that presented itself on the head of our sweet daughter. And has turned into a journey of dealing with a fatal prognosis, and the very premature death of our sweet baby. My great hope is that we might be able to help at least someone, if not more, by sharing this experience.

Thursday, January 27, 2011


Last week was my first full week back to life. It was a toughy for me, as stated by my previous post, but I survived with a smile still on my face. Despite what some people might think, I am actually happy. I still smile, and laugh, and enjoy. But something that hasn't returned is light-heartedness. Don't know if that makes sense to anyone else but me, but I don't feel light hearted. But I also don't think thats bad. I have a different perspective on my purpose in life, that's all. Anyway, today I wanted to mention kindness.

Last week, at the beginning of my toughy week, I went to Frys Marketplace to get some things so that we can actually eat good food that I have prepared in my own kitchen, because up till last week we had been surviving on the generosity of some sweet ladies from my church who brought us GREAT meals, and LOTS of it so that we could eat some then and freeze for later. And that supply was gone. And I think we were getting tired of pizza, Dominoes or Papa Murphys, love them, but we were reaching our limits. So I went to Fry's, a big step for me to getting back to life. Got the "race cart", the best invention ever with two small boys, got the groceries, rang them all up, went to pay... and I DIDN'T have my wallet. And of course I didn't have my checkbook because who carries those around anymore. Ugghhh. So, I sincerely apologized to the cashier, promised to be back in 20 minutes to pay and pick up my groceries and headed out the door sooooo annoyed with myself. When all of the sudden this sweetheart of a girl, about 12 or 13, who reminded me of my niece back in Utah, came up to me breathless ( she had been running apparently) and said, " Excuse me, excuse me. But, um, my grandma wants to pay for your groceries. Can she do that." Oh, so nice. But I said, "Oh no. Thank you though. Tell your Grandma thank you, but thats ok. I'll just go home and get my wallet. Thanks again." And then she left. So I start getting my two boys strapped in the car when this sweetheart girl runs up to me again saying, " Ummm, my Grandma ALREADY paid for your groceries." So then this sweetheart girl ran all the way back, got my groceries, brought them out to my car, and I tearfully thanked her and asked her to please tell her Grandmother how thankful I was for her kindness. I love hearing stories like this. I love that it happened to me. I felt so humbled, and pretty undeserving, but very, very grateful.

Saturday, January 22, 2011

The Struggle, The Solution

I went back to church a couple of Sunday's ago. Going to church these past two Sundays has been hard. I usually love going to church, but to be honest, these past two Sundays, I have dreaded it and although I do learn something, I don't feel the same spiritual refreshment I have gotten in the past. Why? That is a question that I have been asking myself. It could be because there are lots of new Mommys and babies in our congregation. It could be because people really don't have experience with a Mother in my position so they either make really awkward weird comments or avoid me altogether. I don't really blame them, but I don't like it either. It could be because I am a different person now and I just don't feel like I can go be the same person I was before and I am kind-of awkward myself.

My husband has totally gotten back in to his routine, and that was something that did not sit well with me. Going back to work was not as big of a deal, but it was the other stuff. His church responsibilities, and other miscellaneous responsibilities that keep him from cuddling with me on the couch, and holding me and comforting me the way I felt like I needed.

I tried to express these struggles that I was having to my husband. Seeking from him some comfort and peace through all the inner turmoil I was feeling. I knew that I would be sad about Luisa passing away, but these other struggles were unexpected and I was not handling them well at all. While expressing myself to my husband, the things he did and said did not bring that peace and comfort I needed, and then I felt worse.

In the midst of this I cried and prayed and read trying to understand what to do next. And an answer came, "Go to the temple." So I did. And while there I realized that I was going to him, Brent, my husband for comfort and peace, but what I REALLY needed, was HIM, Heavenly Father. It is only through Him that real comfort and peace can come. So simple, but I just didn't see it. While at the temple I also had more thoughts and direction come to me that I needed. Things that are so simple, but very profound. Also, very personal, so not something I can share on a public blog. But I did want to share this:

"There is a beauty and clarity that comes from simplicity that we sometimes do not appreciate in our thirst for intricate solutions." - Pres. Dieter F. Uchtdorf ( taken from his talk: Of Things That Matter Most

I am finding that the things that matter most, the truly essential things of life are simple things. The solutions to our problems and struggles are simple. This does not mean easy, but simple.

Ever since that enlightening day at the temple I have felt so much better and I feel like I know now what direction to take in my grieving and where to go having had gone through such a difficult and yet amazing experience with Luisa, my daughter that I love so very much.

Friday, January 21, 2011

Stylish Blogger

Thank you Jamie and Melissa for giving me this award. So here are the rules:

1. Thank and link back to the person who awarded you this award.
2. Share 7 things about yourself.
3. Award 15 recently discovered great bloggers.
4. Contact these bloggers and tell them about the award!

Here are seven things about myself:
1. My name is Kathleen, but most everyone calls me Kat ( except for my family ), but I do not like cats.
2. I am a teacher by trade, elementary school, I taught 1st and 2nd grade at various times for 6 years and I have been a stay at home mom for about 3 1/2 years. And today I decided that I am going to be a professional Mom because although I liked aspects of teaching ( the kids, other teachers ) there were a lot of aspects I didn't like ( the paper work, NCLB), and I want to spend my life doing something I love, and right now that is being a mom. Although I think being a baker would be great too.
3. I have a big fear of flying in an airplane through a tornado with scorpions crawling up my leg. It hasn't happened yet THANK GOODNESS!
4. I love to drink hot cocoa. I even had a hot cocoa bar at my wedding reception. Unfortunately, living in a hot desert, my hot cocoa season is very short.
5. I am Puerto Rican. Well, half Puerto Rican, so I guess I'm Gringa-Rican. My mom was born and raised on the island, a beautiful place that I love, and my dad is from California. They met at college and the rest is history.
6. I hate cleaning bathrooms, especially showers and I hate potty training.
7. I love hanging out with my husband, taking my kids to the park, Cherry Coke, chocolate chip cookies ( and the dough), the band Coldplay, earrings and taking sunday afternoon naps.

That is basically me in a nutshell. Now this next part is kind of hard for me because I have not recently discovered 15 bloggers, so I might have to break the rule here. I hope thats ok.

1. Kara from Karinne Claire. The first baby loss mom that I "met". I will always be so grateful that I discovered the blog about her sweet daughter that also passed away from Acrania. She is a very hopeful and positive person.

2. Joanna from Beloved Vitoria. Oh how I love this sweet mother from Brazil, and her sweet daughter Vitoria. A true miracle. Vitoria is an Acrania survivor and she just celebrated her first birthday! I am so happy for that family.

3. Jennifer from Eli's Valley. This mother has some very profound postings that I have really enjoyed reading.

4. Sheri from Desperately Seeking Solid Ground, who's daughter Olivia also had ABS on her head resulting in premature delivery.

5. Amy from Bethany-Hope, another baby loss Mommy with some thoughtful postings.

6. Jamie from Forget Me Not Oh Lord who has been so sweet and uplifting for me during my own difficult time.

7. Melissa from Amazing Mikayla Grace, I have been touched by her story, the story of the premature death of her daughter, as well as her, Melissa's journey of healing.

Ok here is where I might be breaking some rules... I am just going to stop here because those are my most recently discovered blogs. Not quite 15, but all 7 have been helpful to me.

Monday, January 17, 2011

Luisa's Burial

We buried Luisa on Jan. 11, 2011, in Salt Lake City, Utah. It is such a beautiful spot. We had my husband's brother take pictures. I know it may seem strange, but I really want to remember everything, and pictures are the best way to do it. Even though it was so hard and I cried a lot. There was a very distinct sweet, peaceful spirit felt. Even though this experience is rough and challenging, I have found some beauty, or have traded the ashes of this experience for beauty ( see Isaiah 61: 1, 3 or this post).

“For the one who dies, life goes on and his free agency
continues; and death, which seems to us such a calamity, could
be a blessing in disguise...” - Pres. Spencer W. Kimball

Saturday, January 15, 2011


Two weeks ago today I delivered my sweet baby Luisa's still body. Last night as I was driving to Fry's Electronics ( my husband's favorite store ) with our two little boys I had an intense memory of being at the hospital and delivering my child. It was so intense that not only did I feel those emotions so intensely that I started to cry, but I also could almost smell the hospital room. And it didn't smell bad, but that is just how strong the memory was. It really caught me off guard. So today I decided to do something to kind of commemorate the day, in a way. I bought a bouquet of daisies, white pom daisies. I love them. I had a bouquet of white pom daisies and red roses for my wedding. I bought a beautiful arrangement of white pom daisies, spray pink baby roses and evergreen for Luisa's grave. And we had everyone at the burial service put a single white daisy on her casket. I remember standing in front, shivering, feet frozen, and taking a deep breath of that lovely daisy scent, and it actually made me smile, right there at my sweet Luisa's burial service. That is how much I love daisies. So today I bought some daisies and once again they made me smile.

Friday, January 14, 2011

Maternity Pictures

These pictures were taken two days before the final ultrasound of Luisa. They were taken by Lori Calhoun at Calhoun ink. I didn't get maternity photos with my boys. I have never been fond of my prego belly. But I am so, so happy that I have these pictures. And the next time I have a prego belly I will proudly flaunt and celebrate it.

Thursday, January 13, 2011

A New Life

Yesterday we made the looooooong drive from Salt Lake City, Utah back to our home in Phoenix. After we unloaded the car, got the kids settled in bed, got ourselves settled in bed, I said to my husband, " I feel like I am starting a new life." And I really feel that way. But, I can't say that I am comfortable with it...yet. I think I can be comfortable with it, and I think I will be. But, right now, not so much. There is no way that I can go back to being the same person that I was before this experience with Luisa. I don't even think I really want to go back to being that same person. But, I feel awkward, and just not quite sure what to do with myself.

Today was harder than I thought it would be. Being at home, having a "normal" day, except for I am not sure what a "normal" day is for me anymore. I think I have to create a new "normal". It is just a strange place to be in.

Tuesday, January 11, 2011

Beautiful Day, Difficult Day

Beautiful day of peace and rest...for my dear sweet Luisa. Difficult day for her Mommy. Today we buried her body, in the cold, hard earth. In a beautiful plot, surrounded by trees and looking out towards the mountains. As we pulled up to the spot where Luisa would be buried, and our family started pulling up behind us, and I gazed out over the lovely cemetery it dawned on me that I, plain old, simple, average Kat Simon was just about to bury a child. A sweet, strong spirit, but my child. Oh, a mother should not have to bury her child. It feels so surreal. But mothers do. I'm not alone in this. But, wow. It. Was. Hard. But, beauty was still there. Peace was still felt. Love was there. I love her so very much. I am amazed by how such a small baby girl could have such a big impression on not only my life, but others lives as well. I am so grateful for the lessons that being her Mommy has taught me.

Monday, January 10, 2011

In Utah

About a week ago, I delivered the precious body of my stillborn daughter, Luisa, at Banner Estrella Hospital in Phoenix, AZ. Banner Estrella was a wonderful hospital, once we were admitted. I started off hating them because of the wait, but then their kindness, compassion, and gentleness, as well as being very competent at their jobs, caused both me and my husband to fall in love with them. I really will be forever grateful for Nurse Darleena, Nurse Nancy, Dr. Suarez, Tammy the photographer, and the other few medical staff that I met.

Tomorrow I will be burying Baby Luisa in a lovely cemetery at the foot of the mountains in Salt Lake City, UT. We have no family in Arizona. My husband and I both moved there (separately) for work, we met there, got married and live there now, but eventually want to move back here, to Utah. Although, to be honest, being here in the dead of winter is not helping Utah win any points with me. It is C-O-L-D COLD!!! And the snow, oh the snow. It's everywhere, even in my car. Not melted, but whole and frozen, inside of my car, because its so cold. I grew up with seasons, and cold winters, but I have been in the hot desert for years now, 8 1/2 I think. So its been awhile. But my husband grew up here, and all of his family is here and the cemetery where we are burying Luisa is so peaceful and so pretty and my husband's grandparents and great-grandparents are buried there. It just felt right to bury our sweet Baby Luisa there. A lot of times when we come to visit ( especially in the summer when its hotter than Hades in Phoenix, and beautiful here ) I do feel like this place, this area is home. I was actually born just south of Salt Lake City, and also went to college not to far from here. So, this place is special to me too, for those reasons. We also got married here in Salt Lake City and it is so so special to me for that reason as well. So I am happy with our decision to bury Luisa here.

Saturday, January 8, 2011

Renewing Strength

Yesterday we made the long 10 hour journey up to Utah to bury our sweet Luisa's body. Her burial service will be next week. 10 hours is a long time to just sit. I tried to read, but my heart was just not into it. Then my mind started wandering, and I had a brief memory come to mind of a conversation that I had with my 3 year old. He had said, "Mommy, I want Luisa to come out so I can play with her." This was before she passed away. But yesterday while on our 10 hour journey my mind responded with, " I did too." I then had a brief image of smiling and laughing with a sweet, chubby baby girl and that was the beginning of the end of me being strong for the day and the rest of the journey was a combination of tears and trying to hold back tears.

So today I vowed to start the day anew on a strong positive note. The only way that I know how to do that is to start the day with scripture study, meditation and prayer. This routine, unfortunately has not been happening lately. But today it happened and what a difference it makes. I was drawn to Isaiah, because there are a few scriptures there from Handel's Messiah, and my recent performance of The Messiah is still fresh in my mind.

Isaiah 40: 31 - "But they that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles; they shall run and not be weary, and they shall walk and not faint."

I felt my strength being renewed. With this in mind I felt ready for the day. We went to the cemetery and saw the special, peaceful spot where sweet Luisa will be buried. We ordered daisies to be put on her casket by her big brothers and cousins, and a nice evergreen floral arrangement since it is so stinkin' cold and snowy here and an evergreen arrangement is the only thing that has a chance of lasting more than a day.

Wednesday, January 5, 2011

At The Hospital

We checked in to the hospital on January 1, 2011 at 1 a.m. When we got there it was very quiet and there was no one there except for a few nurses here and there. From the very minute that we got there we were treated very gently and with great compassion and kindness. After all the craziness of trying to get in to the hospital, I really didn't have high expectations for them. Although I delivered my youngest son there and had a great experience, the agonizing wait killed my hope of having a good experience there. But they absolutely, 110% redeemed themselves. The nurse went through some information with me, the on-call doctor came in and spoke with me. And again, they were so kind and gentle. The started the induction via vaginal pill at around 3 a.m.

I slept for a few hours, and when I awoke I felt some mild contractions. I got another round of the pill at around 9 a.m. ( it has to be done every 6 hours) and within a couple of hours the contractions were much stronger. By around noon, I was in pain that was just on the brink of becoming unbearable. I contemplated getting an epidural, but I really, really did not want to. For a couple of reasons. One, they had told me that this induction could take as long as two days, and the epidural would wear off long before then. And although you can get more, with each dose the epidural becomes less effective. The other reason was I did not want to be numb. I wanted to feel whatever I could of what was left of my time with Luisa. The nurses thought I was kind of weird, and I even thought that I might give in because I am a pansy when it comes to pain. But I wanted to give it my best shot. So I discussed it with my nurse and decided instead to get a pain killer given through the IV just to take the edge off. And it helped a lot. It took the edge off, but I could still feel everything. I wasn't numb.

I had strong contractions, I had back labor ( which I am still sore from) and at around 1p.m. I felt that intense pressure and urge to push. I freaked out for a couple of different reasons, I think. I was worried about pushing without an epidural because I have never done it before. I was worried about my first reaction of seeing Luisa's small, precious, yet deformed body. I had quite a bit of flexibility with the entire labor and the delivery was just as flexible. I kneeled on the bed, breathed a couple of deep breaths, and the bag of waters came out, in tact, with baby Luisa inside. Once the bag of waters fell onto the bed it broke. I was so sad that I couldn't feel her exit my body, I just felt the bag of waters ( which felt like a medium sized water balloon exiting my body, a very strange sensation). I cried and cried because she was so small and I couldn't see her at first. The nurse and the doctor gave me a few moments of crying, and then swiftly moved into action.

I just want to insert in here real quick that the two birth defects that she had, as I mentioned before, were Amniotic Band Syndrome, which that then caused Acrania. We thought we saw a faint mark on the top of her head and coming down onto her face where the band had been, but the band itself was not present. The brain was not exposed to the air, there was a very soft tissue covering it, but it was very soft. I think I remember being able to see the form of the brain under the tissue.

The doctor checked out Luisa, wrapped her delicately in a small cloth, and handed her to my husband, by my request. I had the opportunity to carry her in my womb for several months, I felt her move, I felt her life, I felt her spirit. Unfortunately, my husband didn't. I really wanted him to hold her for the first time. That was the most special moment of this experience. I saw him immediately bond with her and fall in love with her just like he did with our other two boys. To say that it was special doesn't describe it enough, but it was so, so , very, very special. I fell in love with my husband all over again, but ten times more. Then it was my turn. Tears welled in my eyes, my heart swelled with love and tenderness. I was amazed with her tiny features and so sad that this was the end of our time together here on earth. But peace was there. We had my husbands parents bring our boys to the hospital to say goodbye, as much as a barely 3 and 1 1/2 year old can, we had the Now I Lay Me Down To Sleep Photographer take some pictures which are so, so precious to us.

We spent a little while longer with her, and then it was time to say goodbye. We prayed together, and then peacefully let her go.

Monday, January 3, 2011

Getting to the hospital

We found out on Dec. 29, 2010 that sweet Luisa no longer had a heartbeat. The perinatal specialist doing the ultra sound called the hospital that we were planning on delivering at and spoke with the doctor on call from the practice I go to, to inform them of our situation. He then told us to go home and pack the things that we would want with us at the hospital, and that the hospital would call us that afternoon to inform us of when to come in. So we did just that, made arrangements for our two boys, and then waited. And waited. And waited. And finally in the early evening I called them to find out what was going on. The hospital said that they were packed and that we were on a list, the priority list, but that we wouldn't be going in that day, but most likely the next morning.

Dec. 30, 2010, our 4th wedding anniversary. We didn't really celebrate it. My awesome husband was very thoughtful and gave me a beautiful card and bouquet of roses with chocolate. But, overall we just were not in the celebrating mood. We got up, got ready expecting to get a phone call from the hospital that morning. But, we waited. And waited. And waited. And in the late afternoon my husband calls to find out that we were now #2 on the priority list and that there was a slight chance that we would get in that night, but it would most likely be in the morning. Devastation. The hospital was managing to make an already difficult, awful situation worse. We were in such mental and emotional agony. And we were upset and ANGRY. They did not call that night.

Dec. 31, 2010, New Years Eve. I completely forgot that this was a big party day. I felt despondant. I felt dejected. I felt at the bottom. I felt that I and my dead child did not matter as much as the live babies being born. I felt so, so very low. We live in a big city, there are quite a few hospitals here. I really wanted to just try a different hospital, but I was just not in the state of mind to try and figure the logistics of it. My husband made some more phone calls to the hospital and to the on call doctor. The day passed, still no phone call. The hospital had the same story; a lot of women coming in and having babies and no rooms available. In the evening I got a call from my sincerely apologetic and concerned Ob/gyn. Due to the all around craziness, there was missed communication and he did not know of our situation until that day. He said that they had so many women having babies there was a waiting list just to get in to triage, and they had just gotten permission to have a non-labor and delivery floor in the hospital opened to labor and delivery patients. He said he would do everything he could to get us in, but it was not looking like it would be that day. I was beyond devastation, I was numb. With the encouragement of my husband's parents, who had come down to be with us to help us with our two little boys, we decided to go see a movie to help us take our minds off. We went and saw Tron in 3D, which was really cool, and we walked in the door at midnight feeling a little more relaxed.

Jan. 1, 2011, within minutes of the start of the new year my phone rang. It was the hospital letting us know that they had a room ready for us and to come check in at the hospital at 1 a.m. We were pretty surprised but we were ready. I knew that Luisa had moved on, and was happy, and perfect and beautiful. And I knew that she wanted us to move on, but I felt like we couldn't until I delivered her sweet, precious body. It was an awful, horrible feeling and position to be in and one that I really hope no one has to go through.

Sunday, January 2, 2011


Yesterday, Jan. 1, 2011, 1/1/11, our sweet daughter, Luisa Kathleen was born still. the labor was about 11 hours. An induced vaginal delivery. She was tiny. So very, very tiny. More fetal than infant-like. 7.9 oz, 8 inches, and fitting perfectly in the palm of my hand. The estimated time of death was approximately 2 weeks ago, so her sweet body had already started to shrink and deteriorate. But, I can tell you, that it was still special to hold her tabernacle of flesh and oh, so tender bones, that housed such a beautiful, special spirit. Our journey with her life, diagnosis, and prognosis has just ended, and it was way, way too short. Now our journey with grieving, healing, and moving forward begins. My heart aches, I weep because I love her. But I have peace of mind knowing, and I mean KNOWING without a doubt that this was her designed plan, designed by Him who knows all and knows what is truly best. And I have peace KNOWING that she is with Heavenly Father and she is happy. And I have peace KNOWING that we WILL be together again, all of us, living in our Heavenly Home with our Heavenly Father, and all of our dear loved ones who have left this mortal life and enjoy Eternal Life as an Eternal Family.

But I am human. So I still feel the pain of loss. I will still feel sad. I will still weep. My heart will still ache. But the peace is still there.