4 Month Check Up: Shea did pretty well with his pediatrician. We did get some recommendations for his cradle cap (Nizoral and Dove sensitive skin wash), his rashes (steroid cream) and gas pains (have the feeds with formula, others just breast milk) See more about this later in the post. He is in the 7% for weight, 39% for length and 12% for head. The shots came at the end. Poor thing. If you follow us on Sweet Baby Shea you saw the pathetic-ness of our baby. He fought a fever for about two days. There was a whole lot of sleeping and wanting to be held. When awake he was cranky, but for the most part he kept eating.
ENT: Grams, Susi, went with Shea and I to this appointment. She sat in the chair and held Shea. The nurse held his arms down and I held his foot and talked to him. I was very nervous about this whole thing. Shea, all in all, did very well. As soon as they finished clipping him, I was able to nurse him and he did great! It was amazing how well he latched and also how different it felt. Since that was done, I have noticed that: he only wants to nurse when he wants to nurse, he would rather nurse than be bottle fed by me, he nurses for quite a long time (20 minutes), and he is in severe milk coma mode!
So I am going to talk a little bit about our surgical team here. They are completely different than our cardiologist. (though they do communicate weekly about their patients...and honestly they are friends too. They go to medical conferences and even vacation together sometimes) My point of contact is Katherine, she is Shea's nurse navigator with Sanger Heart Clinic. (He has a few nurse navigators) Katherine is like my Stephanie. (If you don't know about Stephanie: Super Nurse) Katherine is my life line. Not just in the heart world...although thats her main job! She is also a great resource of momminess. Alright back to our topic of gas pains and having some bottles with formula added to breast milk or just breast milk. After my weekly update of his O2 saturations, heart rate, and weight, Katherine was worried about that weight. Shea is famous for going up and then down some and then going back up even higher than before. So not only do they want all bottles to have added formula, but also to cut back on nursing, like let him nurse after taking a bottle. Well....I agreed to do the bottle with added formula. But I am still nursing once to twice a day, depending on whats happening. Hope I don't get in trouble...but he is gaining!!! Last night he was 13 pounds and 2 ounces!!!
Cardiologist: We love this man! Seriously...Dr, Ohmstede is a great doctor but he is also a wonderful man We say it every time we leave the office, but we are just so thankful for him and are so glad that he is on our team! The past week I have been thinking that his VSD (hole in heart) was closing up, and even had a hard time finding it (I like to listen to Shea's whooshes!) It is way more constricted according to the dr and the echo! The echo also showed that the shunt is having less blood flow go through it. Shea is just growing out of it. I am glad Dr. Maxey put the bigger one in, can you imagine if he had put a smaller one in????
Someone likes to help with the echo!
So our next steps in the heart world mean that Dr, Ohmstede already let Dr. P know that we need get in for a catherization. This blog has a little info About Dr. P
We will get a call next week to have a consult and then we will go in for a cath. This is kinda of like a dress rehearsal for the next surgery: the Glenn. Speaking of the Glenn, I have purposefully not learned all I can about it....but Dr. Ohmstede said it was time for me to start reading up on it. Once I learn more about it, I will write up a little blog too.
Medicare: So me taking extended medical leave this year to stay home with Shea, actually means that I am getting paid for a few extra months. Which means Shea doesn't qualify for Medicare yet. But there is this other program Tefra that is based solely on Shea's income...which is $0. They are coming out to do a home visit next Wednesday. Glad to get that show on the road already.
Physical Therapy/BabyNet: South Carolina's first steps program is just amazing! We know from our Neuro visit that Shea needs some Physical Therapy (PT) We will have a home visit on Tuesday where she will evaluate in many different areas. I am curious if he will qualify for other services too. I am hoping we can meet with someone before we are back in the hospital.. but thats asking a lot since I think we will going in for the cath in the next two weeks.
Tomorrow we are walking a Heart of Warrior 5K to support a great cause. The founder of this organization saw my pitiful posts on facebook when we had just found out about Shea's heart condition. She reached out to me and has just been amazing. I have said it before and I will say it again: We are so blessed to have the people in our lives that we do. Our family, friends and stranger support is unbelievable! We had a dear friend make us shirts...hopefully I remember to get someone to take our picture!!
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