Feature on Children's website

Our family was picked to be a feature on the Children's MN website recently and had a photoshoot to get some nice pictures to go along with the post.  Direct link to the article can be found here although you can also access it by going to the Children's Hospital's main web page.  Pictures done by Lynsey Tjaden Photography.  

Heart Cath

Today was a big day!!! Margaret went in for her heart cath. She went in a little before 1pm and we were able to finally go back to see her around 5pm. Thankfully, she's been sleeping and keeping her body nice and still so the site where the catheter was put in can clot and heal.  🙏🏻Praying she remains calm through the evening! 

We are settled into our room in the CVCC for the evening and the plan is to monitor Margaret's sats and BP overnight. She will have an X-ray in the morning and then we should be heading home! 

We met with the cardiologist who did the heart cath and Margaret's primary cardiologist while waiting to see her. It sounds like there were no surprises by what was found and they got a lot of good information and we got an idea for what Margaret's medical future will look like. Intimidated? Yep, we are! But we have yet again been blown away by how well we are taken care of here at Children's. 

Next week, the whole team will go over Margaret's case and discuss timeline for open heart surgery. (If you saw me leading up to today, imagine the mess I'll be leading up to OHS!😳🙈). Bill and I agree that we are full of mixed emotions. We are nervous but looking forward to getting this initial OHS done. It will be a complicated surgery but we have a pretty fabulous surgeon and cardiology team taking care of our precious girl. 

Please keep our little lady in your thoughts and prayers. We are all gearing up for a busy next couple of months. Can you believe how strong these heart warrior babies are?! Amazing. All of them! 

Mother's Day

Today was an extra special Mother's Day for me as we celebrated our beautiful baby girl getting baptized! Thank you from the bottom of our hearts to all who shared in celebrating with us today. 💕

This time last year we quietly prayed and nervously celebrated you as we had just found out about you, little miss! You are our biggest blessing and we are so grateful that God chose us to be your parents. 

Cardiology Appointment

❤️Great news on all fronts today! 🎉

Margaret's pacemaker has needed to pace her ZERO times since being discharged! That's right, this little lady's heart is doing 100% of its job!

Margaret had an echo and it looks like her pulmonary arteries are [slowly] growing! Her shunt continues to work well and the next step is to have a heart cath done sometime in the next couple of months. The heart cath will get a better idea of how well everything is working and allow the team to see the MAPCAs better. 

Margaret's cardiologist is very pleased with how she's doing. He is letting us space out our next appointment and we don't go back until JULY!🎉. He will let us know when the heart cath will be done after he speaks with the rest of the team. 

Eating...Margaret is officially letting us know that she won't be taking a bottle. Our plan for now is to very slowly introduce purees and see how she does. ☺️

Thank you all for keeping little miss in your prayers! If all continues as it has been, Mighty Margaret might not have to have her big open heart surgery until towards the end of this year!!! She should be nice and chunky by then 😉

PEG ---> Mic-Key

Margaret went in to have her PEG feeding tube switched out today!  She now is sporting a much smaller Mic-Key button.  She did great and did not even have to stay overnight for monitoring!

Cardiology Appointment

❤️Little miss got a 1 month pass at her cardiology appointment! 🙌🏻🎉🎀She did GREAT and let the nurse and doctor do what they needed - surprise, no ECHO needed today! She will get one in a month at her next check-in. 

Margaret's o2 levels are starting to slowly decline but her cardiologist said that's exactly what he expects considering her specific ❤️defect and the severity of it. For peace of mind, we now have or very own pulse ox to spot check at home. As the numbers go down (and mom & dads anxiety about them goes up!) we will begin to talk about further tests that will need to be done in a couple of months (all depends on her sat level). Then we will have a better idea of when her "full repair" will need to happen. For now we get to keep on keepin on and continue to pray that her levels decrease slowly and she doesn't give us anymore surprises. 

Welcome Home Photos

I have the best sister. For weeks while we were in the hospital Jessie had set up a photographer (Cari Dugan Photography) to come and take some pictures of Margaret for us but things kept coming up and we canceled several times. Well, when we finally got discharged Cari came to our house and did a session with us to help document our first day home! The pictures are great and I never would have taken the time to reach out to a photographer because I was so overwhelmed with being in the hospital. These photos will be cherished forever and I can't express how grateful I am for the best sister ever. She always looks out for all of us and her excitement for being an aunt is unmeasurable - Margaret can't wait to get into mischief with you! "AUNT JESSIEEEEEEEE!!!"