Motivating Mother – Jessica Lundberg

Can I just tell you what a blessing it is to have this blog? I have met so many INCREDIBLE women through it that have changed my life and have given me strength. I am honored to introduce you to someone that has made me a better person and is a great example to me, even though we have never met in person. Jessica Lundberg shares her story with you today about her miracle baby, Alexia, who was diagnosed with Spina Bifida while in the womb. She is THE cutest little girl… EVER! She truly is a miracle and I am so grateful Jessie was willing to share her story with all of us today.

Jessie is the third of four children and is 7 minutes older than her twin sister! She and her twin sister are best friends and enjoy getting together for lunch, shopping and play dates with their kids. Before Jessie became a mama, she spent her time working at a salon as a Cosmetologist and playing tennis with her husband. She and her husband were the Utah State Open Mixed-doubles champions in 2008. They have won multiple tournaments and championships together. She hopes someday she and her husband will have the time to play together again. Jessie also enjoys spending time with her family at Lake Powell. She loves to wake surf, water ski, lay out in the sun, etc. Jessie is currently a full time mom to her beautiful daughter Alexia. She and her daughter Alexia spend their time doing therapy, doing all things girly and some not so girly things too, going on walks to the park, riding bikes, playing with family, enjoying lunch dates with friends and family and dinner dates with daddy! It is amazing to see how much love Jessie has for her daughter and others around her. She loves to make new friends and serve others as often as she can!

Take it away Jessie –

Hi! I’m Jessie! I’m a mother to one beautiful little girl! My husband and I had been married 5 years before feeling it was the right time to have a baby. We celebrated our 6th anniversary just 4 days before she was born. We were living in Vegas at the time while my husband was in PA school (physician assistant).

At our 18-week ultrasound we found out that we would be having a little girl! We barely had time to be excited when we realized there was something wrong. I had had a feeling there might be because the ultrasound tech was very quiet and didn’t seem very excited upon announcing the gender of our baby. When she told us the doctor would need to come in to speak with us I knew the news we would hear would not be good news.

Our doctor told us our baby had a Neural Tube Defect. He didn’t have many specifics for us but told us she could have Spina Bifida, could be paralyzed and never walk, could have delays and other disabilities, but that we would need to see a specialist to confirm the diagnosis and learn more of what our daughter’s future would be. It was about a week later that we met with a specialist. We first met with an amazing genetics counselor, who was also the office manager at the Perinatology office. She went through our family history to decide if we might have a genetic link to our daughter’s birth defect. We found no genetic link and she assured us that there was nothing we did wrong to cause our daughter to have Spina Bifida. It was a relief and allowed me to heal some for the pain I had been feeling since the day of her original diagnosis.

The genetics counselor also explained that in the first ultrasound the doc saw a “lemon sign”- her head was lemon shaped instead of egg shaped, “banana sign” her cerebellum was banana shaped instead of barbell shaped and opening in her spinal column where her back didn’t close completely. A Neural Tube Defect happens within the first 4 weeks of pregnancy, before a mother even knows she is pregnant. She explained that the cells that form the baby start out like a sheet of paper. The “paper” rolls up into a tube shape and then begins closing like a zipper starting from the center going up to form the head, then from the center down to form the bottom and legs. When my daughters “zipper” closed it got snagged and didn’t completely clothes in part of her back.

After 2 hours of meeting with the genetics counselor we had a very extensive ultrasound to confirm her diagnosis and the extent of the opening in her back. The week before seeing the specialist I prayed so hard that the doctor was wrong and that my daughter was perfectly healthy. I couldn’t imagine seeing my child go through a lifetime of pain and difficulty and I wanted The Lord to take it away from her right then. When the second ultrasound confirmed she had all the signs they had seen in the first, I felt really lost and sad for my daughter and was afraid of the unknown.

We then met with the Perinatologist, she explained that our daughter had Spina Bifida and the most severe form called Mylomeningocele; her lesion was pretty high and would mean she would be paralyzed from the waist down. She also told us our daughter had hydrocephalus (extra fluid on the brain). It could cause developmental delays and could cause a lot of issues in her life. She offered termination several times during our time with her. My husband and I had already decided that we would never terminate our pregnancy and were prepared for the worst-case scenario. We declined several times, even with the pressure we were feeling. We loved our daughter no matter how she would come to us and would do anything for her.

At the end of our appointment our Perinatologist handed us a one-page paper from The UCSF (University of California San Francisco) Fetal Treatment Center. It briefly talked about a new, recently out of trail In Utero Fetal Surgery for Mylomeningocele. The surgery consisted of opening the mothers uterus, finding the babies back, putting the spinal cord back in, closing the opening in the back to prevent further nerve damage, closing the uterus with the baby safely back inside until it was time to deliver the baby at 37 weeks. Our doctor was very negative about the surgery. She said that the mother could die, the baby could die and that it was very unethical, she didn’t recommend it and she scared us half to death! My husband and I decided to go on with the pregnancy as normal.

Later that day I talked to my dad on the phone. He talked to me about a friend that had told him that he had heard about doctors performing miracles in the OR on children with these kinds of disabilities. I was so scared and irate because of what our doctor had said that I didn’t even consider it. About a week later I got up to go to work and my husband was already up. He had been doing research on his computer about the in utero surgery. He explained to me that it was definitely high risk but that the benefits were amazing. We continued to do research and sent info back and forth with close family and friends to get their input. We felt really good about moving forward and seeing if we would qualify.

We called the office manager and she was really excited that we wanted to look into fetal surgery. Within 24 hours she had all of our testing set up. We needed a fetal MRI and amniocentesis. Again I prayed so hard that everything would be a mistake and that the MRI would show that she was perfectly normal and didn’t have Spina bifida. When we saw the images we found that things were worse than we originally thought. Our baby had moderate to severe hydrocephalus (fluid on the brain), her lesion was high from vertebra L-1 all the way down and that she also had a moderate to severe brain malformation called a Chari II where her brain was pulling back into her neck from her spinal chord pulling out of her back. It was really hard going through the deviation yet another time. I wanted her to be healthy so badly.

We talked to the Radiologist and he was very frank with us and said if she were his daughter he would do the in utero surgery without a doubt. The in utero surgery would increase her chances of walking without aid by 40% chance, decrease her need for a shunt (a special tube to drain fluid from the brain, that could malfunction easily, cause infection and need to be replaced multiple times, requiring a life time of brain surgeries) by 40% and give her a 40% chance of her brain malformation reversing. Having a child with Spina Bifida is about a .1% chance so 40% sounded like 100% chance for us! When we went for our amniocenteses our original Perinatologist was not available so we saw another doctor and we fell in love with him! He was very optimistic and never once suggested termination. He was very supportive so we decided to switch doctors and he was very excited to take care of my baby and I through the rest of the pregnancy and also when we would return from San Francisco to Vegas. Also during this time we had received a call saying that our insurance was going to cover 100% of the surgery. We were amazed! There were many miracles that happened during our whole experience and this was a really big one for us, especially with how expensive the surgery would cost! Most of our friends were on NV Medicaid because of the cost of PA school, for some reason, even though we would have easily qualified for Medicaid we decided to go with the very expensive school insurance. Had we have had Medicaid the surgery would have never been covered because it was out of state. It is just so amazing to think about every little thing that had to happen just right for us to be able to do the in utero surgery!

We had to wait a few weeks to go to San Francisco, our surgery had to be between 19 and 26 weeks for it to be beneficial. We arrived in SF a week before the surgery date to redo all of the previous testing we had done in Vegas. They were very thorough and wanted to make sure that I was healthy and my baby fit the criteria so that we could have a better chance of a successful surgery and a safe pregnancy following. We had 3 days of testing and meeting with several specialists and doctors. They were very blunt about the possibility of our daughter having to be delivered early/being born prematurely and the major risks involved with that as well as all the different things we would be faced with our daughter having Spina Bifida and what her life would be like. It was somewhat overwhelming but we felt really good about doing the surgery still and continued with the evaluation.

On day 3 before lunch we were told that they had seen a curve in our daughters spine near her opening and that it could disqualify us from having the surgery. My husband and I were so sad. They told us they would do another ultrasound after lunch to see if that was the case. We prayed so hard that the imaging was wrong and spent our time at lunch worried that we might not qualify. We had the last ultrasound and found out that they were mistaken and that we would qualify for surgery! We decided to take one more day to make our decision on going forward with the surgery. My parents had flown into SF and were staying on Fisherman’s Warf. We met them there and discussed all that we had learned and how all of the tests had gone.

From the time we had found out about our daughters diagnosis up to that point, every single door that needed to be opened for us to qualify had opened. We felt like it was a clear sign from The Lord that this surgery was what we needed to do for our daughter. We made the phone call on Friday telling them yes and surgery was scheduled for Tuesday May 10, 2011.

We spent the weekend vacationing with my parents and relaxing as much as we could. My husband had to fly back to Vegas for some tests for school and would fly back in late Monday night to be with me the next morning for the surgery. The Sunday before was my first real Mother’s Day. I felt so blessed to be able to be a mom and to also be able to sacrifice for my daughter to give her a better chance at a normal life! When I decided to become a mom I knew that I would be the kind of mom that would always put my child’s needs before mine. I would still take good care of myself and have “me” time to keep me sane, but life wasn’t just about me anymore. So I really felt blessed that I was given a chance to do something that required such perfect, unconditional love!

The surgery day came around. I was up early, dressed in my gown; they put a monitor on my belly to check on my sweet baby girl. I was wheeled down to have an epidural put in. The would open me up like a c-section only much wider and then they actually had to take my uterus out and flip it over to open it from the back because the placenta was on the front and they didn’t want to risk cutting into it. The epidural would be to control the pain after the surgery. I remember feeling nervous because I had never had surgery before except for wisdom teeth taken out, never broken a bone, etc. and I was not sure how I would handle the pain. Otherwise I felt very at peace. The Anesthesiologist held my hand and patted my head until I was out. There were over 10 different specialists, doctors, nurses etc. in the room.

As I drifted off I felt like I was in good hands and couldn’t help but be so grateful to each one of them for caring so much about my baby and her well being. These were not your typical doctors. They had such an amazing reverence and a beautiful spirit about them! They were bettering these babies’ lives; they got to see these babies before they were born and they knew that they were alive and perfect! Infect not one of them ever called my daughter a “fetus”, they always referred to her as a baby and that brought me a lot of comfort. These doctors were literally performing miracles and it showed in their faces! They were my daughter’s guardian angels!

The surgery took about 3 hours. My mom and husband waited in my room until they brought me up. The doctors had forgotten to get my pain meds to my room so I remember as I was coming out of it, being in major pain. The nurse had called several times and was very upset about the meds not being there ready for me. My mom had to lie on a hospital bed because she was turning white from seeing me in so much pain! They had me on magnesium to stop contractions and keep me from going into labor. I remember being so hot. My husband had to put towels on me soaked in ice water to cool me down. It took them an hour to get the pain meds up to my room. Apparently I get really sick on narcotics so I was pretty dizzy and nauseated from the pain meds. The magnesium makes you feel like you are tired and can’t really move and with the epidural in, everything from my waist down was numb. To say I felt awful would be an understatement! It was about 3 days when the epidural came out and I was allowed to get up and walk around. I was still on narcotics for the pain but they made me so sick, as far as the pain went I was blessed with my mom’s high pain tolerance and was doing very well. I was discharged from the hospital and able to go stay at the apartment we had rented in SF on day 6.

I started taking Tylenol the day we left the hospital and then stopped that just 2 days later! Finally the dizziness and nausea went away and I was finally able to heal and relax and sleep! In the hospital there were machines going off constantly and nurses checking in so I was really ready for some rest! We spent the next 4 weeks going to weekly doctors appointments, where they checked on me, checked on my daughter, did monitoring, checked her heart, her leg movement, her brain, my fluid levels, etc. We made sure to get out of the house at least once a day. We didn’t have a car so we road the train, we had a few yummy restaurants that we looked forward to eating at every day and if it wasn’t for the 7-11 having produce, milk, bread, cereal, etc I don’t know how we would have survived!

I was on modified bed rest the rest of my pregnancy. I had a wheel chair I borrowed while we were in SF that my mom pushed me in most of the places we went. I was allowed to walk a few blocks a day and increase that little by little to get my strength back, but had to take it really easy. I wasn’t allowed to exercise or lift anything the remainder of my pregnancy, I had been very active my whole life so it was difficult having to take it easy but I cared so much about my daughter that I did exactly what I was told! I never like to ask anyone for help, I feel very capable of doing things on my own and I find joy in completeng tings myself as well so I really had to learn to rely on others over the next 12 weeks. At the end of the 5^th week in SF, the doctors at UCSF felt like it was time for us to return home.

We had had no major complications and had healed nicely up to that point and they felt like we were in good hands back in Vegas, so we booked our flights home. Once back in Vegas they did fetal monitorling 2 times a week (we had over 36 ultrasounds by the time we delivered!), I was given a progesterone shot weekly to hopefully help with keeping me pregnant as long as possible. I would need to be delivered via c-section at 37 weeks; I was not allowed to go into labor so if I had contraction before my scheduled c-section it was very important to go in to keep from causing uterine rupture. Also any other pregnancies I might have would need to be at least 2 years apart and all delivered via c-section at 37 weeks.

I remember being so scared to have a c-section. All 10 of my nieces and nephews were normal, full term, pregnancies and all vaginal deliveries. After having fetal surgery though I felt like there is nothing that could be more painful than that and I was prepared! Our c-section day came. The doctor allowed my husband and my mom to be in the room. My mom was so excited when the doctor brought her scrubs 5 minutes before the c-section and said “I bribed the Anesthesiologist, get dressed quickly you get to come in!” I am a twin. I have always had to share my time with my mom with my sister! Those 5 weeks in SF with her were very precious to me. She has always put her children’s needs before her own and she dropped everything to come take care of me for 5 weeks, no questions asked. She never questioned me, she trusted my instincts, she had faith in me, she held me on the really hard days, we laughed every time we went “grocery shopping” at 7-11 and when she had to push me up those steep, long San Francisco hills! She let me have my space when I wasn’t feeling well and just wanted to sit on the couch all day and watch TV. She got me safely through the airport and home to Vegas without a hitch! I was beyond overjoyed when she got to be with me for my daughter’s birth.

Our daughter was born at 36 weeks 3 days, on August 3^rd, 2011 at 10:31 am, on her scheduled delivery day. She was 19.5 inches long and weighed 6lbs 12 oz. I forgot to mention I also had gestational diabetes. Don’t worry I cried so hard when I found out I had GD, it just couldn’t believe it, but when I was told how important it was for me to keep my sugars under control to aid in mine and my babies healing, I followed the diet 100%, except for the pie I had on my birthday and anniversary! But had I gone full term she just might have be 9 lbs!! Yikes!!! I got to see her for 2 seconds before they whisked her down to the NICU. Looking back I wish I would have demanded to hold her right then, because I threw up the next 12 hours from the morphine they used for my spinal for the c-section and they wouldn’t let me go see her until I had that under control. Needless to say, when I saw my baby for the first time I was so amazed at how beautiful she was. She looked just like any other little baby; I couldn’t believe that anyone wouldn’t want a baby like her because she was perfect!

When I was finally able to go see my daughter in the NICU, my husband wheeled me right up to the little box she was laying in and the first thing I did was tickle her toes! When her toes, foot and leg moved I was filled with so much happiness and joy and felt like The Lord was showing me that we had done what He had asked us to do and He was proud of us! My daughter stayed in the NICU for 6 days. She was the first baby delivered in NV that had had fetal surgery, so all the doctors were very cautious about monitoring her. We had a few surgery happy doctors that wanted to do various things but we keep close contact with the experts at UCSF and they taught us a lot about how her back would heal and being patient with the fluid in her brain stabilizing etc. We left the NICU with no surgeries and a very healthy and happy baby!

We took a few days to decided on her name after she was born. We loved the name Faith but weren’t sure whether we would use it as a first or middle name. We decided on Alexia Faith Lundberg. Alexia means protector or defender. And after all that we had learned about faith and trusting the Lord we felt that the name fit perfectly. We call her our little “defender of faith”! Little did she know how much she would teach us about faith and the important things in life and how many people she would touch with her story! We had churches, families, friends, friends of friends, different Christian churches, Catholic masses etc praying and fasting for us and sending emails and messages of hope and love. It was really amazing to see so much faith and love for one little unborn baby! We had people bring dinners, helping us move at one point after returning home from Vegas, donating things that we needed, etc. It was a really amazing experience!

Today Alexia is almost 3 years old. She is beautiful, loving, sassy, funny, smart and pretty typical almost 3 year old! At 10 months her head stopped growing rapidly and her fluid in her brain stabilized, she did not need a shunt and has had no surgeries since her fetal surgery! She is currently walking with a little walker and continues to get stronger every single day. Her brain malformation reversed and caused no damage to her brain. Alexia does a combination of physical therapy, occupational therapy, aquatic therapy, hippo therapy (riding horses), and motor group therapy each week. We are continuing to push her and letting her show us what she can do! I have so much hope that she will walk without aid one day! I want it for her so badly, but one thing I have learned through this experience is that I am not the one in control, The Lord is!

I have learned to trust Him in many ways and recently I decided that no matter what I will trust His plan. I will do everything in my power to get Alexia to reach her highest potential and in the end I am okay with what ever The Lords plan is because He will never lead us astray. I am so thankful that The Lord trusted me to mother one of His angels! She is such a little fighter and brings so much joy into our lives! It is so amazing to see how easily everyone that meets her falls in love with her, even complete strangers! Alexia is such a beautiful little girl with a beautiful spirit! I hope that her story has brought hope to those who are currently going through difficult times in their lives and that we can all learn to show love and support to each other through difficulties and trials! I know that there is no way I could have gotten through all of this without the faith, hope, love and prayers of others! I just feel so thankful for all of the incredible blessings in my life and wouldn’t trade any of the difficulties I have had because without them I wouldn’t be able to have the incredible joys that I have had!

Jessie answered a few questions for me: 

1. What was it like becoming a mom for the first time? After all we went through with our daughter’s diagnosis and fetal surgery, it was such a huge relief to get her here safely! It was such an amazing feeling to finally get to see her for the first time! It took 12 hours before I could go see her in the NICU, because I was throwing up from the morphine! But when I saw her and got to reach in the little box and tickle her toes and see her legs and feet and toes move for the first time, it was such a strong witness to me that miracles happen and that the sacrifices we had made to get her here safe and to give her a chance at a more normal life were all worth it! I finally got to hold her in my arms the day after delivery. To say I was anxious was an understatement! I had see her over 36 times on ultrasound and I felt like I knew her so well, so actually physically getting to hold her was surreal! She was so beautiful! She had tons of dark hair that we had seen on ultrasound several times, super surprising because my husband and I are both blondes! She would sleep with her hands behind her head and her legs stretched out in utero and she did the same thing when she was born too! Becoming a mom for the first time was all that I expected and more and I feel so blessed that such a sweet little angel not only came down here to save me and teach me so much about the important things in life, but also to make me a mother!

2. What have you learned in your time of being a mom? I really have learned a lot during the last 3+ years! I have learned about faith and trust in The Lord and His plan! I have learned how important family and friends and loved ones are and what it means to support others through their trials because of all the love and support I was given in mine! I have learned so much about sacrifice and unconditional love and because of those two things I have come to more fully understand the love my Savior has for me and what it means to sacrifice solely for the benefit of the person you are sacrificing for. I have learned that the people who really care about you will be there for you even in your most difficult and trying times! I have learned that I am not perfect and I make a lot of mistakes as a mother but I am so grateful that I get to say sorry, right my wrongs and do better and that even during my bad days my daughter still loves me unconditionally and always finds a way make me smile and see the good in every situation! Another thing I have learned is not to be so worried about outward appearance or if someone is a little bit different than I am. Alexia has truly helped me feel love towards every person I see. When you don’t have a major disability in your life or someone close to you, it seems like you only really understand what societies idea of “normal” is. Now that I have Alexia I realize that her disability doesn’t really make her abnormal, she is just your typical 2.5 year old who wants to make messes, run in the middle of the street (with her walker), loves getting into things and get super excited when she accomplishes something all by herself. Her disability doesn’t define who she is! Yes she might have to physically work harder than most of us and she may end up in a wheel chair at some point in her life and she has things that are noticeably different than other kids/people she interacts with on a daily basis. But really who doesn’t have something that makes them a little bit or a lot different than the person sitting next to them! Not one of us is alike and I hope that through her example she can teach a lot of people that we all have differences and we are all worth loving and can be more kind and caring towards one another!

3. What is your favorite thing about being a mom? Wow! This is a hard question; I love everything about being a mom! First I have to say I love seeing my daughter accomplish new things!   It took so much work to get her to roll over, sit unassisted, get in and out of sitting, army crawl, crawl on all fours, walk, holding hands, cruise furniture, walk with her walker etc. that we literally, screamed from excitement, laughed, cried, every times she reached each milestone! A baby pretty much teach themselves to do all of those things so to do physical therapy and work over and over and over again with her on new milestones and then to see them accomplished was and still is such an incredible feeling! We really do take so much for granted. I love hearing my daughter say “I love you sooooooooo much!” or “NO! You’re beautiful!” (Pointing back at me after I’ve told her she’s beautiful). Seeing her find joy in her independence. Watching her play with the other kids and having a full life! I love all the kisses and snuggles! I love that my daughter is a mama’s girl and misses me when I’m gone and gets so excited to see me when I get back! I love that she still lets me hold her like a little baby! I love teaching her new things and then going to show her daddy all the new things she knows and seeing his excitement!

I love standing and watching her sleep and being in such awe that something so perfect and precious was actually made by my hubby and I and how miraculous life really is! I could go on and on, there are just so many things that I love about being a mom! It really is the best and most rewarding job in the universe for sure!

4. If you could give a piece of advice to all moms in the world, what would it be? First I would say be grateful for all of the little things in life and be grateful for the good, easier times. You never know when something will come your way that will force you to work harder than you have ever worked, pray harder than you have ever prayed, cry harder than you have ever cried, trust more fully than you have ever trusted, learn more than you have ever learned and sacrifice more than you have ever sacrificed. I believe every person will get a chance to experience trials or difficulties at some point in their lives that seems that will push them to the limits. There are hard days and there are harder days but the incredible blessings, miracles, knowledge, hope, love and support that come from those trials are worth all of the other stuff! Have faith and continue to find joy in the journey!

A quote that reminds me of Jessica and her inspiring story – “Where there is hope, there is faith. Where there is faith, miracles happen.” I know that this is true.

Are you inspired by Jessie and Alexia’s story? Please share! –

Danielle is the owner of Today's the Best Day. She strives to provide creative and uplifting content in order to enrich the parenting experience for women everywhere. Danielle hopes to help you and your family to make every day the best day!

May 8, 2014 by Danielle Davis | 18 Comments