Cardiologist, pulmonologist, opthamologist and triple scope...

In that order, all within a week! 

CARDIOLOGIST

We met a new cardiologist, Dr. Rob Puntel, who comes to Prescott once a month. It was nice not having to drive 1 1/2 hours for one appt. the appt. went really well. He did an echo and instead of having it done and reviewing it, he stood right there and showed me exactly what was going on. Ruby's ASD, (atrial septal defect or hole in her heart) was 7-8mm and is now 3-4mm. I pretty much teared up when he said that. It was the first time that after hearing a diagnosis it actually improved!  He said there was still a chance it could close up (best case scenario), but that it will never increase in size. He also said he wasn't concerned about closing it up at this point. He'll monitor her until about 8 and because she is female will close it up because later in life if she gets pregnant, the increase in blood flow can cause more blood clots and they can pass through that ASD and cause problems. 

He also said her tribeculations were really of no concern and we should follow up in 6 mos. she also has a small PDA (patent ductus arteriosus) which every baby has until a few days after birth. Ruby's didn't close and is so minimal that it was overlooked on her first 2 echos. The result of the opening mixes oxygen rich blood with oxygen poor blood causing strain on the heart and lungs. Hers is so minimal, it is not a concern and we are cleared for being put under anesthesia for the next 6 months.  

Such good things to hear. 

PULMONOLOGIST

We then saw Dr. Rao, our pulmonologist a few days later. Just a follow up, which went well. Ruby had just gotten over being sick and was on oxygen for 3 weeks and still sounded really congested, so she put her on an anti-inflammatory M-W-F for one month to calm down her airways. Orher than that, no big news on her end.

OPTHAMOLOGIST 

We have been going to Dr. Plotnick (Dr. O'niel's partner that specializes in glaucoma) every 2 weeks since she got her shunt put in in November. Her pressure has been 3 since a couple of weeks after surgery. While low, he never made it sound like a big deal and just ends with (it's about a 10 min. appt)

"Alright, well, I'd like to follow up and look now under anesthesia".  I am thinking, "huh?" He said it as if it's like another 10 min. appt. and as if there is so etching wrong that he needs to check because the pressure is low. He said he wants to make sure that all is well with the eye and if so, the pressure of 3 is ok for her.  If it's not, I don't know what...I feel like I left thinking what just happened here? It was such a surprise that he threw out anesthesia like it's no big deal. That's kind of a big deal to me and to Ruby, poor girl, who has gone under anesthesia at least 7 times now. Knowing that it's not the most fun thing in the world, my heart hurts to have it happen every time. So that will be in a couple of weeks. 

AERODIGESTIVE SCOPE

We have been so blessed to be able to be a part of this Aerodigestive group so that the ENT (Dr. Page), the pulmonologist (today it was Dr. Woodward) and the gastroenterologist (Dr. Ursea) can each do their scope one right after the other to determine what the next actions are. I don't know answers I was hoping for, well, yes I do. I was hoping that Dr. Page would tell us that her cleft was healed and that we could go home and throw the feeding tube/pump out the window. If only...

So each Dr. came out when they were done explaining their findings. Dr. Page was first. He said the cleft was still deep and the tissue around it didn't look healthy and pink like it should. Not something permanent, but something that we need to work on before more can be done. He also said that the left airway still seemed like it had something sitting on it, making it more constricted, causing her loud breathing. It's something that with time will get stronger and bigger and because she is holding her own on oxygen, there isn't a need to do drastic surgery to fix it. He also put tubes in her ears, which we knew would be coming...she still had fluid in her ears since birth and while it didn't ever cause an infection, it may have had an affect on her hearing. Now we will be able to hopefully take a successful hearing test (cross your fingers). 

Dr. Woodward was next and said she had a lot of congestion and secretions. He cleaned her out (which I can majorly tell as she is sleeping next to me SILENTLY sleeping). I asked him about deep auctioning on a regular basis (where they put a small suction tube up through the nose and down the throat). He said he doesn't love that because you are going in blind and have no way to know if there is any damage being done.  I asked him about something called thevest.com, that I read about on a laryngeal cleft Facebook page I am on. He said it would probably benefit her and he'd start working on the order right away. 

Dr. Ursea, looked throughout her stomach and could tell she has no allergies (which is great) and put in a probe testing her reflux issues. We are staying 24 hours and will log when she eats, sits up and lays down and has reflux. So far because she's been so tired from anesthesia, we have had no issues. Let's see how the next 18 hours go and that they can get a good idea of her reflux, where it comes from, where it goes and how acidic it is. 

I am so tired. It was an early morning this morning and I pray Ruby gets good sleep tonight for me. I don't love staying in the hospital and am so paranoid about being here during RSV season that I asked that everyone in the room gown up, wear gloves and masks so that there is less of a chance that she leave with a sickness. Let's hope that works and we stay well the rest of the season!

A few pictures from today's scope:

WE LOVE THIS LITTLE SWEETIE MORE THAN WE COULD EVER IMAGINE!!

Shunt surgery follow up

In less than 2 weeks my baby will be 9 months old!?! Where has the time gone? About 8 weeks ago was her shunt surgery on her left eye with glaucoma. It was explained that the shunt is put into the back of the eye and stitched closed with dissolvable stitches. Over the course of 6 weeks the stitches will dissolve and the pressure will gradually go down. If it's not regulated with stitches, her pressure will go from high pressure to no pressure and that's not good either. Before we went into surgery her eye had been pretty constantly in the high 20's. They want it between 6-11. Now after follow ups every 2 weeks, it's at a 3. The Dr. wasn't super worried about this pressure but said if it's still low after this next appt. he will want us to get an ultrasound of the back if the eye. He wants to make sure the shape is normal (not shallow). If that's the case she just may live with lower pressure and be fine. If the shape is off, her vision will be distorted. I don't know yet what that would bring.

It's really amazing to me after eye surgeries how well Ruby can see now. She has a droopy lid on that side that was really opening up more before surgery and now she hardly ever opens it. He said it will take a good 3 months before she may really try because she still may be able to feel the shunt in her eye. How annoying is that for her. Poor thing...I hate when I can feel something in my eye and she just has to get used to it. He didn't give us a prognosis on glasses yet. Once the pressure stabilizes we'll take the next step.

(Before surgery) 

(About 6 weeks post surgery)

Of course right after surgery, she picked something up and was sick for 1.5 weeks. Her getting sick is so hard. She's on o2 and it really takes it all out of her. 

She sleeps a lot when she's sick (which doesn't mean that I get more sleep) and we really have to keep up on suctioning out her congestion and keeping her breathing treatments every 4 hours. She also has to go to 24 hour feeds so that her stomach doesn't expand like with bolus feeds, otherwise she spits up so much there is a worry she could catch pneumonia or have a collapsed lung because of aspiration. We have avoided that so far!  We've gotten sick about once a month since winter started in November. We have gotten to stay out of the hospital, thank heavens, and I am hoping that will all slow down the older she gets and as the season moves to spring. 

As hard as this last year was and I was so eager to say goodbye, I wouldn't take it back for anything. This little love has blessed our home and family so much. We have seen SO many blessings/tender mercies in our lives and I know we will continue seeing them.  It is amazing to watch the innocent faith if our children as they specifically bless Ruby in every prayer we say. We have grown closer to our Heavenly Father through all of this and know that He is in charge no matter what. He knows Ruby and he knows us. I am thankful to know that He loves us individually and that he blesses us individually. I am also thankful that we have had so many opportunities for Ruby and that we live in the time we do where there are many modern miracles. 

She has a scope coming up in the end of January with her GI dr., ENT and pulmonologist. They will put her under and scope from her throat down to her legs to tell us our next steps. I am nervous/excited to move on from where we are at the moment. Nervous for more unknown, excited to get her closer to eating by mouth. I pray this year will bring good things and a little less adventure ;).