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We love the Prices!


Aunt Marian gives good hugs.


Amelia looks up to her Cousin Emily.


Cutie patootie.

Hanging out with my mama.

Cousin Mia is super fascinating!

I started a post on Monday that I did not finish so here it is. I will put today's post on the end as an UPDATE:

Marian and Emily and Mia left Sunday. We are so sad because all of our entertainment is gone (for mommy and baby). Marian met up with a high school friend on Saturday and he came over to the house to visit for a while. No sooner had he left, then my fabulous friend Elizabeth came over for a visit with her little girl Emily and they spent the night.

So she has had people holding, playing, talking and cuddling with her all week long. I hope she isn't expecting this every week. We both took naps today to recooperate. Also, Todd is having his fantasy baseball draft upstairs with about 12 guys and she is hanging out with them so I could have a little R&R before Todd goes back to work this week and I am flying solo once more.

This week we had our first therapy appointment with the SLP named Amelia. This can get pretty confusing so we always are saying "your Amelia" and "my Amelia" to avoid confusion. She explained that because Amelia's mouth has not been exercised (pacifiers, nipples, etc.) that she needs to build up the muscles in her mouth. So first we need to get over her gagging and desensitize her mouth. This just involves doing a bunch of things where we play with her mouth, get her to open it up, touch her gums...lower then upper...swab the inside of her cheeks, and then apply pressure to her tongue, gradually going as far back as she is able. It is building comfort and trust, trying different textures and objects, going at our Amelia's pace.

Tomorrow we have a follow up with surgery and then we have her first PT appointment with a woman named Mike. Surgery did her fundo. She threw up through her fundo a week and a half ago so we are obviously going to have to have her examined to see if it unwrapped or loosened because she should not be able to reflux through it much less vomit.

UPDATE:

11:30pm Sunday evening Amelia had a fever of 100.9. I was asleep in the bedroom and she was in her crib. The pulsox kept going off for her heart rate. Usually I never pay attention to this because it is always saying her hear rate is super low, but it was registering very high that evening and I thought that was weird. So I got up and put my hand on her chest and it was racing. She didn't seem like she was struggling to breathe, but she seemed very hot even though she was wearing a very lightweight outfit. I knew I was supposed to give tylenol and luckily someone had been prescient enough to get a bottle. But the dose info said to consult a doctor if she was under 24 lbs., so we called Dr. Evans to get dose instructions.

The doctor did not seem concerned. We gave her a couple doses and the fever has not returned.

Yesterday we went to the endocrinologist/pulmonary doctor's office. Didn't I say I had an appointment with surgery? I sat in the wrong office for about ten minutes before reception called me over to clarify the doctor I was supposed to see. I was on the 5th floor and the doctor I wanted to see was on the 14th floor. I was already about 25 minutes late because there was a wreck on I-10. So that is how the day started out.

It was the first time I was in the car with Amelia by myself for any length of time and I was pretty nervous. We have one of those mirrors to see the baby in the backseat, but it got messed up and I couldn't figure out how to reconfigure it (now I have -- thanks to Marian for her tip, it worked). We had her on a pulsox so I had to just trust that to tell me if she had gotten in distress. She is very stable with her saturations. The only problem is that when she gets tired she tends to start ripping everything on her face. She rubs and claws at her eyes and rips at the tape and pulls that cannula down to her chin. I assure you her chin does not need to be oxyginated.

Getting Amelia into the car is way harder than getting her out of the car. Loading all the stuff up that she needs and getting out of the house is a nightmare. I have a feeling that I will be losing a lot of weight soon, as it seems Mom's Taxi Service is starting to be opening for business. Struggling to close the stroller is my biggest challenge. I get sweaty doing it and I hate to sweat! I am never sure how I end up closing it, but eventually I do.

Alrighty, so back to surgery...they weighed her and she is 17 lbs. 7 oz. (which is a gain from last weigh in. She had lost about a half pound over the course of a week and a half and I was starting to get worried. Though she did have about a four or five day bout of loose/diarrhea stools which she is now over.) and 26 1/4 inches long.

I told him she threw up through her fundo, she continues to have very wet acid smelling breath where it seems like she is on the edge of throwing up and then swallows it back down, and she is retching, coughing and gagging during every meal. She has started getting more and more fussy which is not her personality. I remember before her surgery last time she was getting crabbier and crabbier because she was so uncomfortable all the time with the constant reflux.

So we are booked for an appointment with imaging at the hospital on Thursday to see if the fundo has unwrapped. If it has, we may have to have surgery for it again. I am trying not to think about it until we need to.

So after this appointment, I had 2.5 hours to kill so I got a Starbucks from the store inside the building (Amelia threw up while I was waiting for my chai tea latte) and then went over to the NICU to chew the fat with whomever might be there. We ended up seeing the desk ladies (Ruby inquired how her girl was doing -- and she did not mean Amelia she meant my MOM) and someone from Child Life, two of her doctors, Nurse Patsy (if you are reading this please send me your email address because I have some pictures to send you!), several case workers, a couple of nutritionists and one of her nurse practioners. We must have been there for about an hour and then I finally mozied on to therapy. I was fighting with the stroller and thought maybe I could load it in the car unfolded, but no way was that tank going to fit in my clown car, so I wrastled with it some more and it folded neatly like magic.

We get to therapy and we never wait more than a minute and I had waited about 15 and I began to think hmmm. I wonder what time our appointment is supposed to be. I thought it was 1:00, but it was really at 2:00. If I had a brain I would be dangerous! So I wheeled Amelia in her stroller around the parking lot and and next door was a little cafe so I got a drink and a snack and we wheeled around some more. Of course she was getting more and more tired and fighting sleep. I just knew her PT session was going to suffer because of it.

So finally we get in to see Mike. She wanted me to take off Amelia's clothes except her diaper so she could see her body movement very clearly and then she also video taped her so she could review it later. Mike had read Amelia's discharge summary from the hospital which she found incredibly helpful. It is so nice to know that someone actually READS this stuff you give them instead of making you repeat her entire history verbally when it is already written down. (In the surgery office they asked me again what meds she is on...and instead of launching into the litany of meds, I told her it was quite extensive and they already had a record of it...take that!)

The PT session had two diaper sessions, several retching sessions, a nose bulb suction session, etc. Yet, Mike thought she got enough interaction time with her to make an assessment. Bottom line she is very impressed with Amelia's abilities despite the extended stay she had at the NICU. She feels that she will be able to make a lot of progress with her and that she has tons of potential. That is the type of positivity I like to hear. I have not heard a detailed plan of what she wants to work on with her yet as she had to rush out for her next appointment.

So we will be doing PT on Mondays and Wednesdays and OT on Friday. I think we are going to try to add another OT session in there some other day of the week.

In addition to this we are going to have an ECI assessement this Wednesday to see if there are any other therapies she may qualify for...she can not double dip and get ECI therapies and private therapy...but if there is something that ECI thinks she qualifies for that we are not already receiving then she may get that as well.

We finally got home around 3:45 yesterday and then Grandmom came over for a visit. Amelia was fussy the entire time. She was retching and even threw up a little bit. I was trying to get some things done around the house while Grandmom played with her but she just couldn't get content or settled. Todd came home and vented her stomach, suctioned out her nose and changed her diaper after she made a deposit. After that everything was peachy keen.

Right now Amelia is in the jumparoo and she is actively engaging her legs to make it jump. This is very exciting because it shows that she is progressing with putting weight on her legs.

I will add pictures later.