YES its been awhile. I’m trying to navigate this whole SAHM thing…so far I suck. My child is well taken care of, but my house is not. Oh well Parks is making so many leaps and bounds according to her therapists…however my mom judges my house. Its a double edged sword I suppose.
Since my last post we have had soooo much happen. I swore I would put a pic album up and I didn’t. I NEED to this week so I shall put in my calendar, I swear thats the only way things happen these days is if I block it in like an appointment.
Drs updates – well we found a new ENT. Part of the reason I haven’t posted is because we really didn’t have that much good news, but this last Friday changed our whole outlook on our coming months! Mostly we have been to the GI & ENT, but we had an appointment with the G-tube surgeon because it broke when it fell out and we ended up in the E.R. but all is well now (:
We saw the GI doc, who wasn’t happy about Parkers weight gain. I’m sorry but last I checked when a child more than doubles their birth weight by 4 months thats ok…plus were trying to get her to move more so why does she need to gain more weight?! At first I was really concerned thinking, OMG I’m hurting my child, she’s not eating enough…so the GI doc suggested we add formula into my breast milk, well Parker flat out refused that, she threw up at EVERY SINGLE feed for 3 days so I decided to stop even before the GI doc called me back and told me to stop. Then we increased the amount, to which Parker also didn’t like but she will tolerate some bigger feeds occasionally now. But mostly she does well with 80ccs bloused over 30-50 min and vent 45 min every three hours. Its a pain in my you know what but it works for us. Sometimes I can do 100-120ccs over an hour or 80 min but not usually and the venting will be at least 90 min so if Im at home all day we can do it this way. I digress…well I’ve talked to many people including strangers about this “poor weight gain” and no one agrees. Parker has rolls on rolls on rolls. Her therapists that are trying to get her to move more don’t understand why we would bulk her up more, and now I don’t either. We are ultimately trying to get her to move more so why would we put on more weight, wouldn’t that make it harder to move..yes it would. So I’m just doing what I feel is best. I’m “breastfeeding” and breastfed babies gain 1-2lbs a month between 4-6 months and 1lb a month from 6-12 months. Also I’m done stressing over it, Parker looks healthy, is healthy and I refuse to let a doctor say she needs to gain 2-4lbs a month for NO REASON, she’s not underweight. I am going to look for a new GI because of this…I like 2nd opinions now, even if its a pain to get her into a new office, I’d rather do that then stress like I am, there are way more important things than this. ANDDDDDDDD to top of our lovely visit, I asked about solid foods, she said NO. As long as Parker had a g-tube she would only have formula. First off, she’s not having formula, second why? I asked her and she said its easy to calculate calories with formula and thats all she would need. No mom I knows, sits and calculates calorie intake for their 5month old, let alone has to calculate how much in a 24 hour period they eat and over what time and how long their vented and what their continuous feed is, but I am…why? She’s healthy and I feel like these things are done for babies that are dealing with failure to strive, where Parker was g-tubed because she wasn’t swallowing or eating orraly in the NICU and this was the best way to move forward. So now what about introducing foods via gtube like a gtube diet, NO. Ughhh, well thats awesome and makes absolutely no sense. I really dislike when people can’t step outside the norm or see a different way of doing things. So I will find a new GI doc who can agree with some of the things I believe in, whether its weight or the gtube diet with some solids.
G-tube surgeon, we saw her because of an E.R. trip regarding the MicKey button failure we had. I asked her how she felt about solids via G-tube and she was all for it and encouraged me to try just like any other baby. YAYYYYYY!!! So I shall be doing this after our 6mo checkup with the pediatrician. I plan to breastfeed the full 12 months and possibly beyond (maybe, if I can and if I can survive 12 months of exclusive pumping). I don’t want her to be another baby on a formula only diet just because she doesn’t eat orally, theres no reason for it. I want her to have the same experience any other baby does, even if it means feeding her another way.
I was feeding Parker and all of a sudden I was soaking wet, thinking I randomly let down but realized Parkers button came out with the ballon still inflated!! AGHHH scary! So now the syringe I’m holding in one hand is pouring milk from the feed, Parkers stoma is pouring milk and Im freaking out. So I run to her nursery, get her on the changing table, all the while dripping milk all around the house. Pull the water out of the balloon, pop in the button, and refill the balloon…and then water streams out of the balloon!!! The balloon port broke and came out with the syringe, so now I have no water in the balloon, Parker mind you, is totally fine. So because I didn’t have an extra MicKey button I have to go to the hospital, but because she has a “fresher” stoma with a semi full belly and broken port I had to keep her against me to take her, not wanting to pull a Britney Spears I call my sister, mom and Bruce…took awhile for them to answer and I started to panic thinking I’d have to drive her alone. Finally made a plan with my mom & sister so I got to packing a BIG bag. Breastmilk, dry clean diaper, dry clothes for Parker, dry shirt for me, dry bra, blankets, suction catheters, iPhone charger, insurance info, medical history, HMEs, extra trach,MicKey button box, put the suction to charge…as if I was going to stay for days because I wasn’t sure how long we would be there or what would happen once we got there. Well my sister got to my house first, we got in the car, I sat in the back still with Parker attached to me, not wanting to squish her in the car seat and have the button stay out we all decided holding her would be best for this situation ( I know how terrible this sounds but if you haven’t been in this situation please don’t judge me unfairly) My mom was there and so was my sister, even a therapist saw us and we all knew this was the best way to go, plus the hospital is less than a mile from my house and we took back roads just in case. As we pulled out of the garage the suction machine broke…SERIOUSLY. So I sent my sister back in to get what I needed to fix it, pulled out again and almost left, then a therapist knocks on the window thinking my sister is me. Mind you…we look soooo similar when we’re both blondes so she was so confused why my sister wasn’t responding to her or looking at her like she knew her. When i rolled down my window she figured out it wasn’t me and I told her we were on our way to the E.R. and apologized for not calling her, she was fine with it all and told us to leave asap and she would call her other therapists that were on their way for Parkers appointment. We got to the E.R. and checked in, the triage nurse calls us over to get her sats, weight and medical history. I explain to him that I can’t lay her flat because she’s “eating” and he has no clue…and says he can’t get us in until she’s weighed…mind you she gets weighed almost every other day at different doctors and had the day before so I told him her weight and he still said he can’t help us until I lay her flat to get weighed. UGHHHH. Fine weigh her, surprise surprise, she weighed exactly what I told him, down to the oz. ASS. Next obstacle…whats wrong with her? UMMMMMM why don’t you ask the NICU neonatologists and ask them…because all she has is bilateral vocal cord paralysis and basal ganglia damage. He asks whats her diagnosis, welllll I just told you BVCP. Ok so whats wrong with her? OMFG I am telling you now it took everything in me not to strangle him, I could feel myself getting white hot. I didn’t bring her in to be monitored, she’s not running a fever, I will take care of her I just need a way to feed her. UGHH. After a few minutes of going back and forth I think he finally realized I was not going to change her diagnosis for his amusement so he sent us back. The PED doctor saw us and said he would rig up a catheter…WTF. No she either needs a G-tube or MicKey button….not a rigged up catheter. So I threatened to go to another hospital and he said he would call to find one. Well lo and behold there was a MicKey button up in Pediatrics so they sent it down, I took her old one out and he put the new one in filled it up and we were good to go..took a while for discharge so I started feeding her immediately (yay for bringing breast milk!!!) and changed her into dry clothes, closed the curtain and changed my shirt. I signed the discharge paperwork and we blew that popsicle stand!!! (: All in all from the time I left my house to the time I got home it was 2 hours… 1hour of it was spent discussing BVCP to an idiot. I have to say though the actual ER visit was short and much easier than I thought, plus now if something scarier does happen I know the routine and can get it down to a faster time!!….phew that was more than I expected it to be lol
Previous ENT- I say previous because he’s moving to Hawaii at the end of the month but after getting a second opinion from another ENT I will NEVER take Parker back to the first one! Well at the beginning of May we went in for a check up aka “I need to ask if everything is ok so come in so I can charge the insurance company and waste a couple hours of time for you”. We get there and he asks how the trach fits…umm what? I guess good? I don’t know how should it fit? He says oh ok, well if you don’t have any problems then its ok…uhhh ok? Weird. Then I BEG him to scope her because we’ve been hearing noises when her trach is occluded, I didn’t want to get my hopes up but knew theres something new happening and I want him to verify what it is. Spent a few min more BEGGING him, and my mother and sister pleaded. It was like pulling teeth. He finally does and Parker is gagging because we went through her mouth, he can’t really see much because she has SOOOO much secretions above the vocal folds and she’s moving from gagging so he pulls out and she falls asleep. Not what we wanted, so he tries her nose and she does fine with it but stays asleep so I’m trying to wake her up but it didn’t work and he says oh I don’t see any improvement, pulls out and sits in a corner of the room. He then says ok, I want to schedule time in the O.R. this next month to upsize her trach from a 3.5 shiley to a 4.0 shiley because she’s going to be 6months old. Well if the plan is to ultimately decannulate why would we go up in size? He doesn’t really explain anything but says we need to do it for her..ughhh fine lets do it. Then I ask about a passy muir. I understand her vocal cords are paralyzed and the passy muir wouldn’t be for “speech” but more for her to get used to it being occluded for periods of time with an ultimate goal of occluding it all the time. He says no, he won’t do it until 18months…WTF. That makes NOOOOO sense but again I can’t argue. I get a feeling like he doesn’t care about the appointment and is just trying to get out as soon as he can, and he does. The nurse comes in to take me into a scheduling room to schedule the O.R. time, I reluctantly do and it was for June 21. I text all the NICU nurses to let them know we will be there for a day or two so they can come visit and we leave. I get sent home with a package to take to the hospital to register and in the back of my mind can’t fathom signing anything until I get a second opinion.
The next day we saw the speech therapist that I LOVE LOVE LOVE LOVE!! I tell her about our disaster appointment and ask her if she has another ENT she likes that we can see and get a second opinion from. So when she leaves we call this other ENT and schedule the only available time before June 21st which was last friday the 1st.
In the mean time we had the BEAR hearing test, which I kept rescheduling because I knew something wasn’t “right” with Parkers hearing. I knew she could hear certain levels but not consistently and not anything quiet or normal range. Well we went after a weekend spent in a graduation ceremony which she slept through and a brunch with a live DJ that I had to speak loudly at and she slept through…now I was almost positive she was really having a hearing problem. I was devastated, nervous, defeated, and scared going there. We get there and the first test shows fluid in both ears….the second and last test while she was sleeping shows even more problems that she can’t hear low or mid range which I had already figured. I started crying..mostly because its another thing this child has to go through…nothing is easy for her and I can’t stand to see her go through another surgery. The audiologist then goes on to discuss a surgery for tube placement, which yes its common and yes its fast, but I think by now we have had our fair share of surgeries, hospital time, scares and sadness. She asks if the ENT has checked her hearing/ears….no. UMMM lightbulb..she referred her hearing test before discharge, she’s seeing an ENT and he has NEVER once looked in her ears. Now I’m pissed. What is this man doing?! UGHHH.
So now…I have another thing for the new ENT. Off we go with our speech therapist so that she knows what the plan is moving forward and I feel more protected. We get to the office and get a stack of paper as usual…I really wish I could fill out these forms beforehand via online or even print them out and bring them in. OH WELL moving on. We get to a room, the nurse says she has no medical history just the referral…AWESOME. The new ENT comes in and introduces himself and actually refers to Parker by her name, WHAT A CONCEPT! Then he asks why were there…so I tell him our old ENT is moving at the end of the month but we also came for a few second opinions on things and he says ok. So I go on and discuss her history, her trach, her NICU stay, her hearing test, the passy muir, the trach upsize and our goals. He takes it all in and answers everything with a positive attitude.
1. Trach does not need to be upsized until 12 months, but our goal is to decannulate at that point so we may not even go up to a 4.0!!! YAYYY 2. She can have a passy muir when she can pass air around her trach…so maybe in a couple weeks or maybe in a few months. YAYYY!!! 3. Looked in her ears, saw fluid and prescribed antihistamines to help “dry” up the secretions! (no surgery for now, lets try this approach first) F**k yes! YAYYYYY!!! 4. Wants to scope her in a month when things dry up and he can see and she needs to be awake and upset! YAYYYY!!! 5. I love him!
He is really positive about everything and had a completely different approach and made me feel extremely comfortable with all the plans. He answered everything and more and never once bucked at anything we said/asked and even encouraged certain things. What a relief!!!
Soooo what now… Well coming up we have our 6month check up with the Pediatrician, going to talk to her about the weight gain, solid foods and goals. In a month we will see the new ENT :D and do a scope, I promise to update after and let all our peeps know whats happening and I’m sure I will find a new GI doc to get a second opinion. Also I want to see a new Neurologist because the one we saw did the same thing every time and hasn’t given us an answer..so why not find another one, whats the worst that could happen, we don’t get an answer. Its not a surprise and I won’t be upset….on to the next.