We made it a month out, but unfortunately your doctors felt that you needed to go back in today for a tune up. I'm disappointed but fortunately this is mainly to sort things out with your medical care. A couple of days ago you started to need more oxygen going up from your usual 1 liter to 1.5 liters. You have also had a miserable time over the last week with vomiting, reflux and the horrible pain that goes along with it. You really haven't gained any weight despite adding formula to my breast milk. We just need all of the doctors taking care of you to brainstorm to come up with a better plan.
We had a lot of tests today. We did a chest x-ray that showed some fluid in and around your lungs that made the doctors concerned that your heart might be having a little trouble keeping up with the increased work its been doing. We then went for an echo (ultrasound of the heart) which was pretty much the same as before showing increased pressures in your pulmonary artery. This puts too much work on your heart! It is just having a hard time keeping up. You did so well getting your labs drawn and those showed that your heart was not pumping as effectively as before. The goal is to decrease the work load your heart by decreasing the fluid with two medicines, Lasix and sporonolactone.
Your doctor then recommended that you be admitted to help figure out the best option for your lack of weight gain and vomiting issues. Which your dad and I believe you need a surgery to put a g-tube in and a procedure to help keep the food down called a Nissen fundoplication. We are also trying to find the perfect formula to add that is easy to digest.
I have always said my hope for you and dreams for you are to simply make you happy and give you the love you deserve. The love is obvious but you are unfortunately not very happy right now. I will make it right my bear. I know this will be a long haul of ups and downs but I am your advocate and I will get it figured out. You are my love!
-Mom
I'll keep everyone updated
