Today's Cardiologist Appointment

Today was a good day. Full of reports of improvement and answered prayers! We started our day with an EKG and echo- on both we saw many sinus (regular rhythm) beats! At some points 128bpm! Her 24 hour heart monitor results came back and all her numbers are up by almost 20bpm! Last time her lowest was 39bpm - this time it was mid 50s!. Last time her average bpm was 56- this time it was 78bpm! Last time her highest bpm was 78- this time it was in the lower 100s! Willow also came home from Ann Arbor with a Mitral Valve that had severe leaking and could require future surgery if there were no improvements. Today we were told that the leakage is now only deemed as mild! Because of this, the Doctor took Willow off Captopril- a heart med we believed would be indefinite!! Willow was also sent home with Pulmonary Hypertension but it was believed that her pressures would come down with time. Her pressures in her lungs are supposed to be around 25 and she was at 59 when we came home from Ann Arbor- today they were between 26-30, so she is close to getting off of her Pulmonary Hypertension meds too! Our cardiologist said willow's heart repair still looks beautiful and her heart is functioning well. The average heart's function is 65% and hers was 65%! Over and over the doctor kept saying, "This is just fantastic!" We still don't know what the future holds- future surgeries or pacemakers are still on the table. Time will tell if her heart continues to get better. But today surgery was not mentioned once and I'll take that as a victory! Thank you so much for your continued prayers! We definitely know that today wouldn't have been possible without prayer and an even bigger God who answers prayer! As of now, Willow won't have another heart appointment till the beginning of June!

Since we've been home...

We are now 6 months out from Willow's open heart surgery. Many of you have been asking for updates and I really keep intending to post something, I guess I just don't really know how to update. Home has been so good... Tim and I went right back to work two days after our return, Willow has not returned to daycare, but has been graciously taken care of by family and friends that have given many hours of their time to love on her. Willow is doing great. She is eating well and gaining weight, sleeping well, and so content and happy. We have have a physical therapist that comes in once a week and an occupational therapist that comes in every other week alternating with speech therapy every other week. Really, if we could just stay home, life would be really good. BUT we have a lot of doctor appointments and I feel like the doctor appointments, while we have great doctors, always leave us feeling unsettled. There are a lot of warnings, "She is at higher risk for this" , "Look out for that." I know these professionals are just doing their job, but I never feel encouraged, or hopeful. The biggest health concern right now is that Willow is still in partial heart block. I am by no means a medical professional, but the best way I can describe heart block is that we have a top and bottom chamber to the heart. The top chamber sends a signal to the bottom chamber to beat in unison (lub dub, lub dub). With Willow's surgery being so close to the node that conducts these signals there has been some sort of damage. It seems that every other beat is being conducted (lub, lub dub, lub, lub dub). Most infants Willow's age are at 130bpm, Willow is at 60bpm. We met with a new doctor that specifically looks at the conduction of hearts around Thanksgiving. He wanted to put in a pacemaker as soon as possible, not because it is an emergency, but almost as an insurance plan. When they sent the info to our Ann Arbor surgeons and specialists they said they had the luxury of seeing her at this rate for 5 weeks and feel confident in waiting, specifically for her to get bigger but I think they believe that a pacemaker is a strong possibility in the near future. It is so hard living in the inbetween. So many ask us how Willow is doing and honestly, if you were with her for a day you would be so impressed. She is a delight, babbling up a storm, she smiles for everyone, she is almost sitting up (Does it for a minute at a time before tipping over), almost crawling, eating baby food like a champ and taking a bottle with ease, and gaining weight. If we just focus on that, there is so much to be thankful for. BUT every doctor appointment we get sucked back into the worry. Worry of opening her back up, of going back to Ann Arbor, worry of what her heart is doing behind the scenes. So here's my plea to my prayer warriors out there- Please pray for a miracle.She has a holter monitor put on today and 4 which will monitor her the next 24 hours- we will find out the results at her next cardiologist appointment a week from today (Feb. 19th). Will you join me in prayer that the monitor reveals that she is out of partial heart block, that she is at normal rhythm at 130bpm? If that happened we would know it is only because of God and not of anything we did. Will you pray for Tim and I? We are always an emotional wreck the 24hours of monitor and the week of waiting for the results. The blinders go on and we forget how well she is doing and are reminded of her diagnosis and all the health concerns that come along with Down Syndrome. We have a month full of doctors appointments (hearing checks, vision checks, etc.).  Each of them take us down a rabbit hole of concern for her future. It is hard on us individually so it is so hard for us to be there for each other as a couple. Please continue to pray for our marriage, mostly because I want to always be proactive and aware of the strains this places on any marriage. Thank you, thank you so much for being patient with us, for partnering with us, and for praying for us!