
The Uecker Family
Our Story
Hi! We're the Ueckers, goodness it feels good to say that. It feels like it's been such a long road to get here. It all started in October of 2023 when Ashley went down to the Mayo Clinic in Rochester MN to get a workup/tested for POTS which is a common comorbid disorder to idiopathic hypersomnia, which she was diagnosed with a few years prior. Through this testing Mayo asked if they could run some additional tests on Ashley's blood for the purpose of teaching/education. Ashley agreed, a few weeks later her neurologist called and let Ashley know that through this additional testing they found GFAP Antibodies in her blood. This unfortunately can sometimes be an indicator of an ovarian tumor. With Ashley's familial history of cervical cancer they wanted her to get a CT Scan asap. Though Ashley explicitly remembers her neurologist saying she didn't think they'd find anything.
Ashley was able to get in fairly quickly for the scan and the results even came back that same day through MyChart. Ashley was in shock, the clinician notes from the CT noted that there were multiple lesions on Ashley's liver and they could not be ruled out as benign. Ashley went into a panic, what did this mean? The next day she was on the phone with every oncologist in the area trying to get an appointment for them to read the CT results and provide some clarity. Finally successful at finding a provider Ashley waited for her appointment. The day of, Ashley was so nervous that she asked a friend to go with her as Edward was at work. During the appointment the oncologist was very informative and open and honest. He said he'd never seen anything like it, that he needed additional testing done. He mentioned that he was 50/50 on whether or not it was cancer. If it was, because cancer does not start in the liver it metastasises to the liver, and because there were multiple. If it were cancer it would automatically be stage IV with little that they could do.
Ashley and Edward spent the next few weeks getting more testing done and preparing for the worst. More than anything Ashley wanted Edward to be ok if/when something happened to her. It wasn't until a liver biopsy was done on Dec 26th 2023 that we finally got answers. The results came back as the lesions being a very rare but benign form of lesion called hepatic adenomas. These lesions feed off of estrogen and were more than likely caused by birth control, the likelihood of getting hepatic adenomas is 0.017%. So we had answers, now what. While planning for the possibility of a terminal diagnosis in December Ashley and Edward decided that if it had been cancer that they were going to get married. Fast forward a few weeks a second conversation about getting married came up towards the end of January... A question arose, why does Ashley have to be dying for the two to get married? So in less than three weeks a wedding was planned and had in secret aside from Ashley/Edward's best friends.
The topic of children also came up after finding out the lesions were benign. Ashley had always been on the fence about kids, because of her medical history, and being diagnosed with Bipolar II, she didn't want to unknowingly pass anything along to an innocent child. She also didn't want a child to go through anything that she did while growing up. After many thorough discussions Edward had eased some of Ashley's fears/apprehensions and the possibility of children became something to be excited about. One problem, the lesions, the amount of estrogen released while pregnant while surpasses that of what is released while on birth control. Not only that, but there has only been 11 documented cases in history of women being pregnant and having hepatic adenomas. For fear of Ashley's life possibly being on the line again, we consulted with her hepatic team at Abbott. We were told under no circumstances could Ashley get pregnant until having a major liver resection/ablation. There in lies another issue, the largest lesion was roughly 3.4cm dead center in the middle of the right lobe of the liver. To remove it meant losing 60% of the liver and over a year of healing and therapy to get back to "normal."
Ashley's case was brought to the medical board of the state of Minnesota. Essentially a team of elite doctors that meets once weekly to discuss difficult and unique medical cases. Ashley's fate was decided in the next week's meeting. They would resect (remove) the lesions that were readily accessible along the outskirts of the liver. Anything not readily accessible would be ablated. The same technology that your microwave uses is pulsed through two probes and used to cook the lesion locally so that there is no more blood flow to the lesion, effectively "killing" it. The largest lesion in the right lobe would be an experimental ablation as typically anything over 2cm is not ablated.
That very surgery happened on May 7th, The recovery was long and hard and included many trips to the ER due to complications, post operative pneumonia being the worst. After weeks of recovery, finally the week came for the MRI that would give them the blessing to start trying for children. Everything went great! And thankfully so, because later that very same week after 8 positive tests it finally hit Ashley & Edward that Ashley was really pregnant! Very excited scared and nervous all at the same time they called an OBGYN to get an ultrasound scheduled. They were scheduled in just a few weeks!
Things didn't go quite as planned. Prior to the appointment Ashley had been doing blood tests every other day to monitor HCG levels. Everything was looking good, so her OBGYN said that we should be able to see baby the next week via ultrasound. During the ultrasound the tech was very quiet and didn't say much. We honestly had no idea what we were looking at on the screen. In the appointment with the Dr. after the scan, he noted that a yolk sac and a gestational sac were present but they couldn't find a heart rate or evidence of baby. He went on to explain that sometimes the body will give off all of the signals of being pregnant but never actually create a baby. This could be our case, or it could just be too early to see baby on scans. They scheduled an ultrasound for 10 days later (the second of July) to either confirm pregnancy or to start the process of a medical abortion to remove the yolk sac and gestational sac to avoid infection.
As life would have it, Ashley & Edward also moved that very weekend to a place of their own in Cologne, MN. Ashley was headed back to work in person that Tuesday for the first time since her liver surgery. Unfortunately, that day, they were notified that Ashley's position at work had been eliminated. She no longer had a job effective immediately. That also meant that she lost her health care coverage on June 30th. All Ashley & Edward could think about was that appointment on the 2nd. Ashley was denied Medical Assistance through the state and had to move the appointment. Finally after a bunch of research, phone calls, and emails. Ashley was able to get approved for MA and scheduled the ultrasound for the next day. What a blessing, a heartbeat and baby was found and Ashley was confirmed pregnant!
It was made clear from the beginning that this would be a high risk pregnancy because of the possibility of new lesion growth. So over the next few weeks Ashley & Edward were getting acquainted with Ashley's care team. As well as Ashley putting in hours of work everyday trying to find new employment. As the days and weeks went on Ashley started to notice a change in her mood and thoughts. Excitement about the pregnancy turned into fear and doubt. It became so severe that Ashley began having suicidal ideations.
Ashley was diagnosed with Bipolar II and OCD in 2019. It was concluded that because of the increased rate of metabolism while pregnant Ashley's mood stabilizers were not working as well as they once were. So day after day Ashley fought through the mental as well as physical challenges that pregnancy had brought on. Finances became a detrimental struggle and it got to the point where every credit card was maxed out, and Ashley & Edward had no idea how they were going to pay the next months rent on Edward's teacher salary alone. Finally Ashley found a new job and things leveled out a bit after an increase in medication. During this time Ashley and Edward had to make the impossible decision to let their beloved cat Tigger (who Ashley had had since the day he was born) cross the rainbow bridge suddenly. Ashley also experienced turmoil in her relationship with her mother, who ultimately decided that she no longer wanted Ashley in her life and the two no longer communicate, despite once being the best of friends.
By the time the second trimester came around, it presented new challenges. Heartburn, continued nausea, exhaustion. And the thoughts were back, worse than ever. Ashley couldn't control her thoughts, the worry, the rage, the anger, the sadness. All she wanted was for it to end and to get relief by any means necessary. Ashley's care team suggested that she take a step back from work and go into a parenatal partial hospitalization program in an attempt to provide some support and to teach Ashley essential coping mechanisms and tools to get her through this tough time.
That seemed like a great idea, however it meant that Ashley's salary would be reduced by 40% while she is on Short Term Disability. The two hadn't even begin to catch up from the months that Ashley was unemployed. The days and times of the program meant that Ashley would be unable to work. Because of the prior medical complications and losing her job, savings were non existent, credit cards maxed out, they had already taken out a loan. Ultimately, Edward would be forced to get a second job on top of his already demanding teaching job, that would allow them to barely scrape by. Ashley didn't want that for him, she didn't know if she could cope with his absence at night and on the weekends for her to be able to go through the program.
Ashley desperately needs this program to learn tools and resources to help her cope and to build a bond with their little girl, Lily Avery, that will be here before they know it, and to get a medication regime in place before post partum hits. We just can't do it alone. We've never been good at asking for help, but now more than ever we need it. We so greatly appreciate any and all forms of support while we get through this tough time, and grow as a family. Thank you, from the Uecker's party of two, soon to be three :)
Family Updates
Good afternoon to everyone following along. I know it's been a minute since our last update. A LOT has happened. We were able to get through the Christmas season, thankfully it was pretty uneventful. Ashley had her 33 week appointment on Thursday January 2nd. Where we were told for the third time that bany was measuring greater than the 98th percentile and Ashley could feel it. She cried to her OB begging to have her c-section earlier than 39 weeks. That same appointment Ashley ended up having a high blood pressure reading which solidified a gestational hypertension diagnosis. This meant she could have her c-section at 37 weeks. The clock was officially ticking. At this point there was less than three weeks before our little girl would be here and we were far from ready. Ashley had a friend come over Friday and they spent all day in the nursery getting things ready and doing some last minute shopping for must have items. That Sunday, while Edward was watching the last patriots game of the season Ashley's water spontaneously broke. In a slight panic we headed towards Abbott as Ashley's contractions were getting stronger and closer together. Upon our arrival we were told neither of our prefererred physicians with whom we had birth plans with were available. Ashley went into a panic, there was a reason we had two doctors with our birth plan, to make sure one of them would be available for the delivery. Yet no one planned on a 34 week delivery. With being such a high risk pregnancy an intricate birth plan had been worked out to ensure the best possible outcome for both mom and baby. All of that was slipping away as the minutes ticked by, Ashley's contractions progressing, trying to convey a lengthy birth plan to provider after provider from the anesthesiologist to the OB performing the c-section to the nurse that would be in the operating room. Ashley ended up getting both a spinal and an epidural in anticipation that the spinal may not work because of another condition that Ashley has. Thankfully the spinal worked long enough to delivery a 7lb 12oz, 19 inch long baby. None of the doctors or nurses could believe that she was a 34 week old preemie. The NICU was on standby and ready to take her, however after 10 minutes on cpap Lily was breathing on her own! So she ended up in the special cares unit at Children's. Ashley did great through the procedure, losing minimal blood and came back from the spinal tremendously. Ashley was released on Tuesday. Going home without Lily was one of the hardest things ever. Both Ashley and Edward made the hour long drive one way every night after Edward got off of work to children's to see little miss Lily. After few days of this a kind nurse noted in Lily's chart that her primary care was in Waconia. She offered to have Lily transferred to the NICU there. This was initially an extremely difficult decision to make. More than likely insurance would not cover an elective patient transfer. It wasn't until two hours before the propose transfer time that Waconia called and offered to pay for Lily's transfer from Children's to Waconia. We were so unbelievably thankful. The transfer took three hours due to a snow storm that was hitting the area. Once at Waconia Lily began to show everyone there what a fighter she was. She very quickly started regulating her sugars on her own, so the UVC (an IV put in through the umbilical cord) was removed. All that was left for her to do was to learn how to eat, swallow, and breathe at the same time. Unfortunately that Friday Ashley was admitted to Waconia herself with pre-eclampsia. When she went into the ER her blood pressure was 171/120. The doctors in the ER put padding up on the bed Ashley was on in anticipation that she would have a seizure her blood preasure was so high. Ashley spent the weekend in the hospital on magnesium and high doses of blood pressure medication in an attempt to regulate her blood pressure. Ashley was able to go home on Sunday. It was a grueling long stretch while Lily was in the NICU. Ashley and Edward felt such a heavy weight of not having Lily home. Finally, on day 9 Lily made leaps and bounds in terms of her progress and got the blessing to go home! Since she has been home she has gained over a pound and grown half an inch. Ashley and Edward are still trying to figure out a new normal with an infant in the house. Edward took as much time as he could off work to be home with Ashley and Lily. Unfortunately it wasn't much time at all. Ashley is also faced with the difficult decision of going back to work 3 short weeks after Lily's birthday. That's all the catchup we have for now. We super appreciate anyone that has been following along on our journey. We will try to make updates more frequent!
Good morning everyone, wanted to give anyone following along an update. The decision was made late last week that Ashley's last day at work would be Friday (the 15th). This was quite a leap of faith, but in the end we believe the right decision to make. Is it scary? Yes. Do we have everything that we need before baby gets here? No. Are we prepared to live off of 60% of Ashley's income? Absolutely not. But sometimes you have to do what you feel is right in the moment and the rest will fall into place eventually. We have been through so much in the last year, this seems to be yet another hurdle to get over. But looking back at how many we have overcome already.... What's one more right?
Ashley is jumping right into the IOP program today. She is feeling a whole lot of emotions this morning. It's nerve wracking going into a group where you're expected to bare it all in front of women you've never met before. In addition, with Ashley's situation being so unique a fear is, what if she can't relate to anyone? It honestly feels like a first day of school all over again.
Thats all for now. We so appreciate all of the donations that have been made thus far. The support has been so uplifting encouraging. We understand not everyone following our story will be able to donate. That's ok! All we ask is that you keep sharing on any platform you can think of! It goes a long way.
Thanks for reading everyone. Happy Monday!