Strong Together: Eisley’s gofundme

$1,500 of $8,000 goal

Raised by 26 people in 5 months
Created July 1, 2018
31009462_15304960334142_r.jpegJohn and Kristi Dalberg are happily expecting their fourth child, a baby girl who will be named Eisley due this September. Unexpectedly Kristi and John were given some devastating and frightening news.
About 6 weeks ago, the doctors found a large tumor on the left side of Eisley’s heart and a small tumor on the right side. In addition they have discovered three tumors on the baby’s brain. As you can imagine, this has turned their world upside down. Kristi and baby Eisley have seen many doctors and endured multiple tests and scans. They are being monitored very closely through echocardiograms of the baby’s heart and in-depth ultrasounds.
The care of mom and baby has been transferred to a large team of doctors at the Kansas City Children’s Mercy Hospital, where Kristi will be delivering Eisley because of these special needs. While the baby is doing okay at the moment, doctors are anticipating long-term care and visits to Children’s Mercy for years to come. They’re not sure what the next 11 weeks of Kristi’s pregnancy will be like. The medical team is unable to determine at this point how the tumors will impact the baby’s heart and brain functions after birth.
Because of the ever growing care that Kristi and baby are and will continue to need this family is facing ever growing medical expenses.
John and Kristi purchased a 72 year old cottage style home to raise their family. The home is in need of some significant repairs to the exterior to make it habitable. Family and friends are rallying around to provide the labor to do these repairs. Windows and trim boards have wood rot and need replacement, and the house needs to be painted. John works full-time but with these extra costs they find themselves in difficult financial need.
Will you join others in praying for Kristi and John and their family during their time of need and consider making a financial gift as you are able? Your kind consideration of this request would be a tremendous encouragement and help them to meet the current financial issues they are facing.
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Little Baby Eisley Girl Update:

We went in for another appointment today. The kids got to come along, which was part fun and part not. ha! They got bored pretty quickly but liked their tour of the NICU, the playrooms, the sibling shelf, etc and especially liked helping use the ultrasound probe to take pics of the baby and listen to her heart beat and blood flow. She even gave them a disc of all the pics they helped take. The pic is of Z pretending to feed a baby while he waited.

As for Eisley, she didn't quite complete her 30-minute biophysical test but they gave her some extra time, and she cooperated...so they let her pass this week. The two little heart tumors remained about the same size and the big one actually shrunk a little in size due to the fact that she's growing but the tumor is not. She's in stable condition and is good to go for another week! She also weighs a whopping 5 pounds, 5 ounces, which is great! We need a good, "healthy" baby!

My heart rate has been more normal so I don't have to go in for testing, thank goodness! We are fairly certain I've been having anxiety attacks/stress with it coming closer to her arrival, with all the decisions regarding her care, induction decisions, selecting her TSC doctor/hospital for after birth, different hospitals, different medicines/trials, etc. Also, trying to schedule appointments for after her birth, get medical records taken care of, figuring out plans for our big kids, trying to get settled in an home that's still very much under construction, trying to work on the house, etc. It's just a lot right now, and it's hard to not get stressed out about everything.

In saying that, over the last few weeks and after hours and hours of research online, praying for direction and discernment and several long conversations with TS doctors all over the country, a few different TS clinical trials, several different hospitals, the TS Alliance, and several other moms of kids with TS (believe me...again - it has just been a LOT!)...we have decided that it's in Eisley's best interest for her to have all of her care transferred to the St. Louis Children's Hospital after she is born. We love Children's Mercy, and they are great at so many things. For example, their Fetal Health Center is amazing! Our big kids go to OT weekly at CMH, and we'll continue to do other care through them...but again, after everything listed above, we feel St. Louis Children's will be the ideal place for her right now. Eisley will see an experienced TS doctor and will also take part in a clinical trial specifically designed for newborns who have been diagnosed with Tuberous Sclerosis. We will make the trek to St. Louis every 6 weeks for the first year, every 3 months for the second and third year, and then, much less after that should she be doing well. Through these appointments, she will be very closely monitored in hopes of preventing/delaying/immediately treating infantile spasms, epilepsy, etc which are extremely likely in TS kids. We feel at peace with this decision, and really feel like she'll have the best chances of a "normal" life with this trial.

-Eisley has a an appointment scheduled a couple weeks after she is born with St. Louis Children's. She cannot have an infantile spasm or a seizure between birth and the visit or she won't get to participate in the trial, which would be bad news for her. So...pray she stays strong during those few weeks!
-Pray for me to be able to just relax and not feel so anxious/stressed about everything right now.
-Pray for our big kids to be understanding when it comes to all the conversations, phone calls, appointments, etc. We know it's hard on them, and they're sort of taking a backseat right now. We've been trying to spend extra time with them but I know it's still taking a toll on them.
-Of course, pray for Eisley to continue to remain stable for the next few weeks! (Less than 5 weeks till her arrival!)
-Pray for our house to get SO much accomplished this weekend so we can start to feel a little more settled before this baby comes!
-Pray for me as I figure out how to balance/juggle everything from this sweet, little baby who isn't even here yet to starting our homeschool year to keeping up with Macaroni Kid to the kids' extracurricular activities to working on/around the house to various appointments to keeping up with Zion to remembering to take time to just sit and be still.

Also - thank you so so much to everyone who has been praying for us, who has come on and helped with our house, who has kept our kiddos during appointments, who has gotten me out of the house for some time away, who has just supported us in offering your time and services...you have been so amazing, and it's really amazing to have such an incredible support system holding us up!
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Sweet Baby Eisley Update!

John Dalberg and I went in to Children's Mercy for a pretty much all day appointment yesterday. I had an echocardiogram, in-depth ultrasound, a 30-minute biophysical test, a meeting with Child Life, and some consultations with some people from our team.

From the echo, we found out the small tumor in her heart did grow quite a bit, and they've found a second small tumor on that side of her heart. The larger tumor has remained approximately the same size. In saying that...Eisley is continuing to grow, her heart is continuing to function well despite the tumors, fluid is not accumulating, and she does not have any arrhythmias, which is GREAT!

Eisley will take a 30-minute biophysical test where she has to accomplish 4 tasks within 30 minutes each week...and she passed her first test with flying colors.

We also found out they'll be inducing me by the 39th week unless Eisley provides a reason to need to come sooner. We will chat more about this next week, and we will take it week by week for the last 6 weeks of my pregnancy.

Our meeting with Child Life was great! They gave us some suggestions on chatting with our kids and helping them understand a little better what's going on. They also scheduled to have them come to my next appointment where they'll let them "help" with the ultrasound, get a tour of the NICU and a big playroom, play with a doll that's hooked up to a bunch of tubes/wires so it's not so scary later, and they'll play/talk with them during my appointment to see how they're coping and what they're understanding. They also gave them some NICU sticker sheets, a NICU storybook, and big sibling/NICU activity books, which are very cute. I'm excited for them to get to come back and be more involved as we are getting closer to the end. (We stopped having them come with us because the appointments are usually several hours long and because they're typically pretty emotional/stressful for us. This has been really hard for them so it will be fun for them to get to check it out and get involved again).

My heart rate has also been higher than normal lately, which isn't good and has made me not feel well. I have to keep track of it this week, and if it's peaked too many times over the next week, they'll be sending me to Truman Medical Center next week (they partner with Truman and the OB actually comes over the connecting walkway to deliver me at CMH) to have a couple of tests done on my heart.

I was also given the info for the TSC doc at Boston Children's Hospital and St. Louis Children's Hospital, where we think Eisley will become an official patient. We will be video conferencing with both to make our final decision but we are leaning towards Boston because what we have heard about that doctor lines up more with how we treat/prevent in our own family. Obviously, we're willing to do whatever it takes to help her; however, if we can do things a little out of the norm to be more beneficial for Eisley, we'd rather do that for her sake in the long run. Children's Mercy has been GREAT; however, our meeting with the TSC doc at CMH did not go so well. In fact, I walked out pretty upset and frustrated. He just doesn't seem to have the experience with TSC nor the type of treatment/intervention/prevention plans we're looking for Eisley that many hospitals have been offering for years. He also was pretty much a big jerk to us, which apparently he is known for... so...we will see how the video conferences go, and we will update you from there.

-Eisley will continue to remain stable in these next few weeks.
-Wisdom on selecting Eisley's main TSC doc who will see her and treat her over the next several years of her life.
-No more tumors decide to pop up
-Our big kids as they attend the appointment next week (I'm anticipating it being a little emotional for them)
-Our house can get done before the baby...this is exciting yet stressful for us.
-We'll be starting school this next week to get a jump on the school year since we will be taking time off after baby. We usually don't start until after Labor Day so my kids aren't super excited...just pray it goes well, and we can accomplish lots before Eisley comes.
-We have some decisions to make about Eisley's arrival - induction, dates, how things might go. These are all up in the air because only Eisley can truly decide how things will go...but pray for wisdom for us in making these unofficial decisions.
-Pray for my heart rate to stay within the normal limits and for me to feel good so we don't have to deal with that, too!

My sweet friend, Ginny Gaynor, is planning this shopping event - we would LOVE for you to come out! Click the link and say "going" so we can show the vendors how many people are coming out! You can also reach out to her via FB if you're interested in becoming a vendor. https://www.facebook.com/events/844705839061324/
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We went in for another appointment for Baby Eisley today. They did an ultrasound and decided to perform an echocadiogram of her heart to verify her stability, even though it wasn't scheduled for today. The smaller heart tumor grew some (this is the tumor on the valve of her heart where her blood flows) but it's still not blocking the flow, which is good. The large tumor stayed the same size over the past two weeks, which is great, and it's also somehow not yet affecting the functioning or beating of her heart. There's also not any fluid around her heart at this point either. It's likely we won't get an update on the tumors on her brain until she's born since her skull is growing thicker.

I'm almost 31 weeks so we know she's going to be arriving sometime within the next 9 weeks depending on how she holds up. At this point, they said she is in stable condition, and she is actually just a little more stable this week than she was at the last appointment, which is great news. We will be going in for weekly appointments and will make new decisions each week based on how she's doing. The doctors also tried to prepare us by making it clear that this is the time when things start to get more serious at the appointments. They also confirmed that shortly after birth, Eisley will need to be seen by an out of state children's hospital by doctors who have more experience with her condition than Children's Mercy Hospital, which will not be covered by our insurance (nor will the travel, scans, tests, etc), but will be necessary for her longterm care and stability. We'll be learning more about this in the coming weeks as we meet with more specialists in these areas.

So...for today, we felt like we received, overall, "good" news and are preparing ourselves for the next several weeks of what's to come.

Specific Prayer Requests:
-Eisley's heart to continue beating and functioning as it should with no fluid buildup around her heart
-My personal stress level (everything with baby, our financial situation and knowing what's to come, and the repair work on our house has been causing me to feel stressed lately, which isn't good for the baby's overall health and stability)
-Wisdom for the doctors and wisdom for us in discerning what's best for Eisley as we start to come to some difficult decisions in the coming weeks

If you feel so led, we'd also graciously love support in helping us cover expenses. You can give directly or through this gofundme: https://www.gofundme.com/strong-together-eisleys-gofundme

(Pic from our last appointment).
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How Can You Help? Here are some opportunities to help us make our home able to be occupied this fall and winter:
FRONT LIVING ROOM WINDOW - 52 1/2" X 56" (Glider) ------------------------------------------- $160
FRONT BEDROOM WINDOW(S) - Two windows 30"X54 1/2" (Double Hung) $160 each = $320
FRONT BEDROOM WINDOW - (Double Hung) ---------------------------------------------------------$160
NORTH DINING ROOM WINDOW - (Double Hung) ----------------------------------------------------$160
KITCHEN WINDOW (Glider) 28X32 -------------------------------------------------------------------------$100
DINING ROOM WEST (Double Hung) ----------------------------------------------------------------------$180
DINING ROOM NORTHWEST - 2 WINDOWS (Double Hung) $160 each = ----------------------$320
MASTER BEDROOM (Double Hung) ------------------------------------------------------------------------$150
UPSTAIRS DORMER WINDOW (Single Hung) -----------------------------------------------------------$125
UPSTAIRS BACK BEDROOM (Single Hung) --------------------------------------------------------------$125
TOTAL: -------------------------------------------------------------------------------------------------------------$1,800
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$1,500 of $8,000 goal

Raised by 26 people in 5 months
Created July 1, 2018
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