Status Update:
Hello everyone! I figured it was time to do a 'quick' update on Emma and where she's at currently. 

She is seriously the sweetest and easiest baby. She is currently still sleeping (8:15am) while I type this from 7:30pm last night! She is very social and loves interacting with people (even masked people at her appointments). She laughs and has all kinds of squeals and is quite chatty. She trills her tongue and smiles when she gets your eye contact. This weekend she will be 7 months old and is like your typical 4 month old. She is getting stronger everyday and is starting to enjoy tummy time. She can now roll onto her side and with minor assistance she can roll onto her tummy. She sucks on her hands and has started to reach for her toys a little.

She still takes a level 3 thick feed. Everyday she gets ONE breast milk bottle mixed to level 3!!! The reason we don't do every bottle is the breast milk requires double the thickening gel as her formula does, so in an effort to not overload her system with the gel we do just one bottle of breast milk to get all the nutritional goodness in her system and the rest of her feeds are still the Enfamil AR 24kcal thickened up to level 3 with simply thick. She drinks A LOT of milk during the day (probably because she takes a coma at night) and averages about 180-200ml of milk in 6 bottles each day (all with the added sodium). Then twice per day she gets .5ml of the Poly Vi Sol liquid vitamin (which ironically is the same vitamin that used to make her brady in the NICU). To mix you do 200ml of water with 4 scoops of formula then stir in 1 nectar level packet of Simply Thick. Stir for 1 min. Then let it sit for 5mins to thicken. Then add sodium/vitamin and warm it up. Easy enough right?! 😅

Here's where we're at with her treatments:
Pediatrician - Now because her weight gain has been phenomenal (She's about 13lbs currently) we don't have to go every few weeks for weight checks. So now we just go and see them for the regularly scheduled immunizations.

Cardiologist - On June 2nd we will be going to see the cardiologist for a follow up on the hole in her heart (PDA). I'm sure exactly what to expect at that visit because the schedulers don't know what the appointment is about, but I'm assuming she'll need a follow up echo to see if it has changed in size at all. It may be contributing to an issue with her kidneys (more on that below) but either way this is a standard visit as follow up from the NICU. Her last Echo was in the NICU.

Endocrinologist - We don't have this scheduled yet, but because Emma is still on Sodium Chloride (currently 1.2ml 4MEQ/ml in 6 bottles/day) there's clearly something amiss because we have to continue to titrate it up as she grows to keep her lab work in the normal range. The most likely reason her sodium levels are funky is something with her kidneys may not be functioning properly. This could all be related to the PDA (hole in her heart) as well. Either way we need to see Endocrin to run all the urinalysis etc. to see what's going on. I always just say she's so sweet that she needs a little help getting salty. 😉

Labs - Because of the sodium, we continue to get her blood drawn every other week over at the outpatient building. This is what caused all of the ER drama a few weeks ago. So instead of the heel pricks now we have to have them use the butterfly catheter and then drip the sample into the tiny vile to avoid hemolysis of the sample which shows the elevated potassium. Which sounds easy enough but Emma HATES it and they have to bring in a helper to help us pin her down. 💪

Dysphagia Clinic - So because Emma failed her second swallow study we have to see the Dysphagia Clinic which is a team of people out of Children's in Denver. Fortunately because of coronavirus we don't have to go in person to see them! We did our first telehealth appointment with them last week on Thursday. We do initial triage with the nurse with temperature and pulse ox readings (we have the Owlet monitor). Then we met with the nutritionist to go over her feedings from a nutrition perspective. Then OT and Speech joined in together to watch her feed (which was slightly challenging through the computer camera). Then the pulmonologist joined us to talk about her lungs. This I found very helpful. I had the most questions for him. Everyone else it was essentially just Lindo and I teaching them what we already do for her feeds that's working well so they don't change it. I asked the pulmonologist about her Chronic Lung Disease diagnosis, because she is thriving and went home without oxygen. He said it's a standard diagnosis for anyone who is still needing oxygen support beyond day 28 of life. So since she was on oxygen for the 90 days she was in the NICU she'll just always have that diagnosis. He explained to us the risks with her aspirating her feeds and the long term damage that can cause. He was SHOCKED that she left the NICU without oxygen. Babies who go through he lung journey (oscillator, vent, CPAP, etc.) typically need oxygen for about 12 months, especially at our 7000ft elevation! What a miracle! He also was shocked that she has never had a respiratory virus yet (considering she has toddler brothers) and that us keeping her healthy will likely have the biggest positive benefit to her long-term lung health. I felt very validated in our isolation and hand washing vigilance. She statistically will have asthma, but because Lindo and I don't have it her chances are slightly lower. Emma also doesn't seem to listen to statistics! We'll meet with them (hopefully via telehealth) again in a few months. They also said they don't recommend doing more than 2 swallow studies in one year because of the risk of radiation exposure. So she'll be our level 3 thick girl even when we switch to cows milk until at least January 2021.

GI - She still sees her GI specialist every other month mostly as follow up now. He suggested at our last meeting that because she is still aspirating her bottle feeds below level 3 thick she will need to do her first few REAL FOOD feeds with an OT present. To make sure mechanically she is able to handle food better than her bottle feeds.

OT with the Feeding Clinic - So the OT we met through the Dysphagia Clinic scheduled us for an in person feeding appointment to give Emma her first big girl food! It's crazy how different it is with a NICU baby compared to my term babies. We can't just wing it and start feeding her. She will get her first solid food Monday June 1st over at outpatient. Hopefully that goes well so we can continue to feed her at home and not have to see a specialist just to get the poor girl a meal!

Pulmonologist - so beyond the pulmonologist we saw through the dysphagia clinic we need to see another one. Our pediatrician wants to get a specialist opinion on if Emma will continue to need the RSV vaccine next winter. There's certain requirements that need to be met to get her the vaccine and she is very borderline. They want to get us in to the majority of specialists during the summer months because the risk of catching the seasonal bugs is much lower.

PT - Every week we do telehealth appointments with her PT Dawn. These appointments are great because I've seen so much improvement in her gross motor skills, but they are so challenging. Emma has to 'perform' well at a certain time each week (name one baby that can just do all their tricks at the drop of a hat!). Also every week we seem to find something else that needs work. We have a list of over 16 different exercises that we have to do with her each day which on top of balancing work, toddlers, and anything else is just a lot. It takes about an hour at least to go through all of them each day. She has improved a lot which is promising, but it's just challenging meeting with someone once per week and getting a new list of things wrong with your baby. Our PT is beyond nice and so helpful, it's just heavy. Also with PT it all falls on me. Like Emma doesn't care and won't do her exercises if I don't force her. A lot of her care is very isolating. I'm the keeper of all things Emma. Technically Emma has torticollis so we, beyond all of her exercises everyday, have to keep her world completely oriented to get her to look left. She lays in her crib so looking out is left. We change her on the changing table left handed so she has to look left. We're supposed to feed her left handed and any play, all stimulus needs to be to her left. Holding her you need to put her on your right shoulder so she has to look left at her brothers.

OT with Early Intervention - We still meet with April from Early Intervention once per month. This is the group that comes to our house, but we've been doing telehealth visits since corona virus. April is really helpful and gives me a lot of resources for her development. Shes also the only provider who texts with me which is beyond helpful when I need it. She's the most hands on and has been even just a good sounding board for me to bounce off all of her other treatments and see what her thoughts are. She agrees with all that PT is working on with her. She also said that her use of her arms could be just a musculoskeletal issue (aka girl needs to lift some weights) or it could be a sign of Cerebral Palsy. So she will do a neurological eval with her when we can meet in person again. Because she was born at 27 weeks she has a 30% chance of getting CP.

Optometrist - We will go in for her follow up eye exam sometime in June. This will hopefully be routine!

Phew! That's it! It's really overwhelming. Again day to day Emma is just the easiest, sweetest baby girl around. Then you look at her chart or her calendar and it's a quick reminder that we still have a long way to go. I'm doing okay with everything too. It's hard because there is so much stuff for her I feel very alone in managing her care. I'm Emma's keeper. To be honest I enjoy typing this all out periodically so that it's just written down somewhere for me to reference. Because of corona I haven't been able to go to therapy for the EMDR therapy I had been doing. That require the machine that you do in person and touch with your hands so it'll be a while before we can get around to that again. It's amazing what some triggers are. Sometimes it's as simple as driving down the road that goes near Emma's NICU. Sometimes not! Sometimes it's seeing certain people who added to the trauma during that season. Either way I have my therapist available for telehealth visits when I need her. I just loved the EMDR therapy and was making a lot of progress there. One step at a time. 

I'd love your prayers for her cardiology visit (they may decide surgery is best) and endocrin as well that there may be a simple fix for whatever is causing her sodium issues. Also the neuro evaluation. Those are the big unknown things that could just be the entrance of the rabbit hole with more and more specialists to follow. Thanks everyone! I hope you're all safe and doing well! 💜