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
Naturally Loved 