Its been awhile. (Drs update)

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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.

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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.

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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.

ImageG-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.

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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

ImagePrevious 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.

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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.

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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!

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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!!!

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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.

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Loooonng overdue update….

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Where to begin? I guess from my last post so much has happened its hard to pick or determine one specific thing to talk about first.

WordPress app-well the reason its been a while since I posted, I’ve been blogging from my phone which apparently wasn’t “publishing” just saving drafts with about 10-20 copies because each picture I uploaded saved a new draft. That’s fun. Let’s start over  (:

First and most importantly, Parker is swallowing!!! YES YOU READ THAT RIGHT! For 12 weeks she didn’t swallow, we had to suction her mouth or let her “drool it out”. Well a day went by when I was home with her that I thought hmmm I haven’t suctioned your mouth Parker, whats the deal? I checked and sure enough it was wet but she wasn’t drooling. I texted Bruce…”Don’t get your hopes up but I’m pretty sure Parker is swallowing..?” He replied with a “really?”. So the day passed and a few others where sure enough we weren’t suctioning her mouth…but where was it going? Was she really swallowing or was she just dryer than she had been? NO SHE WAS SWALLOWING. That week I came to find out she has the weirdest swallow, normal I suppose for her since she knows no different. She keeps her mouth open. WTF right? She keeps it open, leans her head into her neck like a turtle and swallows. It sounds like she’s gagging but she’s definitely pulling saliva back into her throat by doing this weird turtle move. Over the last few weeks different people have noticed the difference and think it’s amazing! I don’t know what I can attribute to the swallowing, whether it’s her starting to put pieces back together by herself, the “breast-nursing”, kangaroo time, the oral massage, the speech therapy we do, the accupressure massages I’ve been trying….whatever it is I’m thankful for.

Now this I thought would mean…no more trach, not so much. The ENT wasn’t as thrilled and just wants to do a swallow study. UGHHHHH. Well the GI doc isn’t ready for her to do a swallow study. AWESOME. So now we wait a few more months. (I would like these doctors that think a few more “weeks” is nothing to realize if they had a trached baby that they have to suction on sometimes an hourly basis, wake up at night because the humidified mask is off, or even drive alone and pull over on a freeway to suction and hear “oh lets wait just a few more weeks” is really not fun to hear). However our appointment with the pulmonologist this week was hopeful, he really wants her to have the trach removed by next spring and anticipates it coming out sooner with the progress she’s made over the past 2 months.

Another update, when I suction Parker in her trach I hear this weird gasping for air sound that we never heard before. I looked it up and so far all signs point to vocal cord movement. However, we may not be able to verify this for awhile as doing a bronc will depend on her ENT, which we see the 24th of this month. It’s funny, when she was a candidate for the trach surgery he assured me that we would do all this testing after the trach to track her progress for decanulation, however when I tell him she’s swallowing he was not all that impressed. Oh well, I should get used to this feeling of being let down when things don’t go the way I want them to.

I know that her having this trach meant her coming home safer since her airway wasn’t protected but by no means did that mean I was happy about it or support the doctors choice 100%. No one will ever fully know what this type of special need is like until they themselves have to take care of a trached baby for hours on end without help. I know that we are allowed to have a nurse come in and help, and some days I regret not having one but others I am so thankful she’s home and I can’t imagine having a stranger ever watch my baby again. She spent 70+ days away from her parents, there’s no reason for her to spend any more away from us if I can help it.

Since Parker’s been home Bruce and I have had a few arguments, a few breakdowns and a million smiles. We fight when we’re tired but at no point do we get upset because we have a special needs baby, we get upset from the lack of sleep that this trach causes us, the amount of work we have to do to take care of it. At no point can we be “off”. I can’t leave Parker alone for even 2 minutes in a room by herself, so we’re attached at the hip from 8am until 3pm while Bruce is at work. My mom comes over usually before work from 8am to 9am and thats when we clean up and pick up my house a little. She gets her snuggles in and our tornado wreckage turns into a house again.

AS THEY GROW. AMAZING CONSIGNMENT EVENT. I volunteered this sale and had a great time, it felt good to make the store look amazing and to know I did the majority of it. I will definitely volunteer next season and sell a ton more. I only sold a few things this time to try it out, and surprisingly it was easy, smooth and I got my money back a week after the sale ended! I made out with some g diapers, a boppy, a swing, a bumbo and a play pen. The gs I got had some retired patterns for girls..and cost me less than $7 each! Ummm whoever these covers came from probably had no idea the amount they could sell them on ebay for, THANKFULLY! I can’t wait till Parker is in a large now!!! The bumbo has so far been unsuccessful….the swing-well she loves it sometimes, the boppy- Bruce has gotten more use out of it than Parker but it comes in handy sometimes, the playpen- we only used it once but at least now we have a place in the living room to put parker at my moms besides on top of us or the couch and I expect it to come in handy more when Teddy, her dog, realizes Parker is a person and not just a fixture.

Easter- came and went too fast. It was our first holiday with Parker home and it was wonderful. We put ears on her, of course, and then we had a cookout. We had my family here, Bruce had one of his best friends in from Nebraska and one of my favorite NICU mommies came over with her itty bitty twin boys. It was so much fun we ate and talked and drank and then when it was all over we survived and had a great time! It’s still hard for me to let Parker be with someone besides Bruce or myself but my mom seriously stepped it up. She spent 3 hours with her Sat night then 2 hours Monday with her ALONE. It felt good to get out with Bruce and I had started to question our relationship because it seemed like all we were doing was passing baby off to one another when we needed a break and then we would retreat to different rooms but those few hours out made me realize he is my best friend and we are amazing together.

I had my first NICU mom call me for advice today…dealing with PPD. Talking to her made me realize I probably had more than I thought I did. My OB never did the questionnaire with me about it but she knew what I was going through so I’m sure the breakdown she saw me have in her office didn’t cause her to throw up a red flag when she was actually crying with me. No one expected my baby to leave the hospital 73 days after she was delivered. I want to start a support group for the NICU moms/dads because no one knows what its like to leave your baby every night and then suddenly come home to therapists, social workers, nurses, doctors, appointments, check ups, and home health companies. It was unbelievable how unorganized everything was even though I was on top of it all and I want others to know there is someone going through that same thing and there are better ways.

 

FYI…our at home trach change count is at 6….CRAZY! I can’t believe we have done 6 trach changes at home…only 1 was questionable but my mom and sis helped and they had no idea what it was supposed to actually look like so I won’t count that one as completely successful. I still get nervous until the trach is in and occluder is out. I feel like I hold my breath the second the dirty trach comes out until the ties are attached and were snuggling again. Parker is such a good sport about the whole thing, its crazy how much she went through and continues to go through.

Ok, I think thats enough for now…I really need to update more often. I have a ton of pics to upload so I think I’ll throw up a gallery this weekend. If you have instagram or gifboom add me – jamlovesyou

 

I hope everyone that reads this realize how much I appreciate your support, understanding and thoughts. This is a tough deck of cards we got dealt but we are definitely trying to make the best hand of it<3

 

 

 

What a looooonnnnnngg week.

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Wow. How do people do this with multiples or even babies with more problems than Parker? I have been MIA because we have so many things happening. On average we had at least 1 follow up appointment a day for the past 2 weeks,  plus nurses coming in and out to weigh and assess Parker, PTs, OTs, speech therapists, friends and family over at the house.

Parker is 3 months old!!

Parker is 12 lbs, 22.5 inches and 3 months old now!!!

I had my first outing with Parker last week to the Pulmonologists office. Considering we took her to my mom’s for a practice run the day before and it was a disaster I was expecting the worst. When we went to my mom’s house it was a 30 min car trip and Bruce sat in the back with Baby. She cried the entire trip, it took her almost an hour to settle so I figured the trip alone was going to be horrific, well it wasn’t. Parker was calm and sleepy the whole time, even while waiting she was fine. She didn’t get upset until we were coming home, but it had been almost 4 hours since she ate last and we keep her on a tight 3 hour schedule so she doesn’t have to get upset.

Gimme the milk

Gimme the milk

The next outing was a longer trip to the Surgeons office (G-tube) they’re about an hour trip from me and in traffic sometimes longer so I recruited grandma to come sit with Parker in the back. Again, she was perfectly happy and content until we hit some bumps…oh she hates the bumps. I can’t blame her though, if my cheeks bounced as much as hers did I would probably be upset too.

Bouncy Cheeks

Bouncy Cheeks

We have had 2 assessments done, one by Nevada Early Intervention Services and one by HPN, our insurance for private therapy. The assessment done by NEIS showed Parker isn’t developmentally behind, which was a HUGE relief knowing that what we are doing is helping her. The assessment done by HPN told us that she won’t need physical therapy by their group because her gross motor skills are on track…YES!!! We do have an occupational therapist coming and of course both have speech therapists and NEIS has assigned a vision and hearing specialist to come also which I’m happy about.

Sleeping Upright

Sleeping upright

When we were in the hospital Bruce and I tried to hold and play with Parker as much as we could, I was there a lot but feel like even that much wasn’t enough for her. Newborns are supposed to be held and spoiled not be kept in an issolette only having range of motion done every 3 hours to keep them from stiffening up. Since she’s been home we have gradually introduced her to different things. We pretty much only put her in her playpen thing at night when she’s on a continuous feed and hooked up to her humidity collar. Even at night, after I hook up her feed I keep her in bed with me until Bruce comes to bed and then we move her and put the collar on.

Bruce and baby sleeping

Bruce and baby sleeping

 

Since she’s been out we hold her, family holds her and she gets time to adjust to beds, couches, bouncers, being held in all sorts of positions, tummy time, being completely flat, and swaddled. It took a while for her to enjoy some of these things but now she’s ok with the majority of them. Most recently the sitting up and being held upright have been our biggest concerns but every morning after I get ready I clean up around the house with her on my chest upright and its our morning routine and now she’s finally learned to sleep and get comfy during that time. It makes me happy because a week ago this was not a fun time for her or me, having to constantly put her down to suction her because of the unhappiness that causes mucous in her trach, nose and mouth.

Morning Snuggles

Morning Snuggles

It has been a huge adjustment to come home from the NICU, there we were given all the info we needed at the time, sure there were phone calls going back and forth between myself and specialists or insurance but now its a constant thing. I counted one day the calls regarding just Parker and it was over 16 in a 6 hour time period! Mind you, those were just the ones I could answer, and I had about 5 voicemails. I’m sure over time it becomes less and less but still that is a lot to deal with on top of everything else thats happening.

This beds only big enough for 2!

This beds only big enough for 2!

For now things have settled but come next week we have more doctors appointments and a few more “assessment” appointments and the dreaded BEAR hearing test so I know its going to come to a point of chaos soon so for now Parker and I are doing some online shopping and relaxing while we can (:

MacFun

MacFun

 

Frogs

”Frogs