Tough Like Tessa
28 February
Today is Rare Disease Day!
Our journey with a rare disease began in February 2016, when my 20 week ultrasound revealed a growth on the baby's side and leg. We were sent to the University of Iowa Hospitals and Clinics for further testing. The high risk OB doctors were not sure what our baby had, but automatically feared the worst and suggested (several times) to abort. Each doctor worried about a different problem, and truly believed she wasn't going to make it.
I was aware of this, but I also knew that God had created this baby. If He wanted to take her home to heaven, He would do it in His own time- that was not my choice to make. So we prayed for strength and peace for the very uncertain future, and fully relied on His plan for our little baby girl's life.
days of my life.
There have been many days filled with uncertainty, discouragement, anxiousness, and fear.
But there have also been countless days of joy, answered prayers, encouragement, triumphs, and outpouring love.
We cannot imagine our lives without Tessa, and will forever be thankful for the lessons her life has taught us.
We still do not know what her future holds, and so we continue to pray and to trust God with her life.
When Tessa was 2 weeks old, we took her to Mayo Clinic in Rochester to visit the Vascular Anomalies Clinic. She is under the care of a multidisciplinary team there, and was diagnosed with CLOVES Syndrome when she was 5 months old.
Her first treatment was sclerotherapy on her abdomen when she was 7 months old. Since then she has had three more rounds of sclerotherapy on her abdomen and groin area. She also takes a small dose of medication, called Sirolimus, two times daily.
Last year, Tessa had a lot of GI complications, unexplained fevers, and severe anemia. She lost a lot of weight, her stools were always very runny, and even the highest dose of iron supplements could not raise her hemoglobin to a safe range. She spent a week in the hospital and had an NG tube placed. It was determined that her malformation was causing her GI problems, and her body is not able to absorb nutrients.
The formula she was put on, Peptamen Jr, has done wonders for her. Thankfully she loves the flavored versions and drinks them orally, so we were able to remove her NG tube after a week. Her body has now absorbed all of the lymph fluid that was collecting in her abdomen, she is at a healthy weight, and her hemoglobin is in the normal range. We don't know if this will be something that she will need to take for the rest of her life, but we are so thankful for the ways in which it has helped her little body.
Living with a rare disease means that there is not a lot of information to prepare you for the future. Each patient with CLOVES Syndrome is special and unique, and requires a day-by-day approach. We are so thankful for the helpful people we have met so far on our journey, and hope that we can be a help and encouragement to others as well.
8 comments
LOVE LOVE LOVE, I can't get enough of her and her amazing spirit. So thankful for her <3
ReplyDeleteShe has spirit, that's for sure! 😂
DeleteI agree with Kelly! The Lord has done seriously incredible things with her ❤️
ReplyDeleteRight?! Things that we didn't even think were possible. God just proving His power to us over and over again!
DeleteWhat a joy to see her walking! Praise the Lord!
ReplyDeleteWow, what a journey for sure!!!
ReplyDeleteLove the pictures!!!
Hugs to you all as you embrace this precious pumpkin's incredible purpose & journey!! SHE IS ADORABLE!!!!!!
XXOO
I've been following your story/life for over a year now from one of the Friday Favorites. I also live in Iowa and we have just started our journey at University of Iowa Hospital, not for what Tessa is going through, but my son had an accident on the 24 of February and he has 2 emergency surgeries on Monday Feb. 25. We are very thankful for our team of drs. that are saving his eye and is able to see more and more each day. Anyways, keep up the good work of being Mom to your cute kiddos and a great wife to your husband. Praying for you and your family and that Tessa keeps making improvements.
ReplyDeleteHi Laura! Somehow I missed your comment until just now! Thanks so much for your kind words. I'm so glad that you have a great team of doctors helping your son. It's such a trial to go through! I pray that his eyesight will return completely.
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