Post 8 Month Miracle

More than two weeks ago Mia turned 8 months old. I didn't write a milestone post because we were having a hard time. She wasn't progressing at all. In fact, she was regressing. A lot.

It's hard to explain my feelings towards my daughter having Spina Bifida. Basically, I hate it, but I love her. My choices were,
1. Not having Mia at all
2. Having Mia with Spina Bifida and all the challenges that come with it

I am so glad I chose option 2. It can be so hard sometimes, but I would never give her up. She brightens up my day! I would do it all over again, even when it's hard.

My cute little Wonder Woman!

For the past month Mia has been regressing baaaad! She had the upper-body strength of a newborn or a 3 month old. She could not hold her head up for longer than a minute. Could not do tummy-time for a minute either and any position was just too uncomfortable and hard. 

Also, for the life of her, she could not eat solids. Any time we tried, she would throw up a ton! It wouldn't even go all the way in her mouth. As soon as it touched her tongue it was, see ya later food!

So, when 8 months came along, there was nothing good to report and I just wanted to enjoy her smiles, and giggles. Also, I was trying to come to terms with everything that is coming and I just couldn't bring myself to write about it. 

During Spina Bifida clinic, she was seen by the Neurologist, Neurosurgeon, Physical Therapist and Occupational Therapist. Like always, the Neurosurgeon acted like a robot and left. But everybody else was concerned with Mia's lack of movement in her upper body and lack of interest in eating solids. She also wouldn't put any toys in her mouth. When doctors get as concerned about something Mia has as I am, I get even more concerned because I knew something was wrong. 

They ordered a sleeping study, a swallow study and a sedated full-body MRI. These will be done in November and beginning of December and we'll get better results then. 

This past weekend though, we've been seeing miracle after miracle! I felt like I needed to write about it.

Friday November 4th: Mia played with a pretzel licked it with her tongue AND didn't throw up!!

Saturday November 5th: Mia put a toy in her mouth for the first time EVER!! She didn't touch it just with the tip of her tongue, NO! She full on put it in her mouth and played with it!

Monday November 7th: Our physical therapist came over to our house. Mia lasted the whole hour!! She didn't even cry! We worked on rolling, tummy time, and sitting! The therapist evaluated her and she is now at a 6 month level in upper body strength AND working on some 5 month motor skills!! 

I am SO happy! I mean, going from 3 month old strength to 6 month old strength in a few weeks, it's a big deal. She still can't hold her head for super long. But she can do it longer than before and that is fine by me! 

She is almost rolling over. She is getting better at grabbing toys! Her hands are opening up a little bit more, she's not as fisted as before. 

We also worked on a new move. Going from her side to sitting! The therapist led her through the entire thing. But, she loved that exercise. 

Also, her language is almost at 8 months! WAH-BAM!

Sometime this weekend, she started screaming! I feel like her personality is finally coming out! She now gets frustrated because she can't move how she wants to. So, if she's laying, sitting, or facing the same direction for longer than she wants, she complains and screams. It's hilarious and annoying. But I am so proud of her!! Is it weird that I like her screaming because it's annoying? That's a "regular baby" thing and I am so happy! 

Watch my sweet baby roll! Way to go Mia!!

Mia is 2 months!

My sweet Mia is 2 months old today! I can't believe how fast time has flown by. First, let's talk about how well her back has healed! You can't even really tell that the scar goes up to almost the middle of her back. The body is amazing isn't it? The way it repairs itself is quite a miracle.

Snuggles with daddy are the best

This month has been tough for Mia in a different way. She got sick with the cold. Let me tell you, having a baby this young get sick with the cold is NO JOKE. We have been either in the doctor's office, the E.R or the Respiratory Clinic, almost every day for the past week.

On Sunday (our actual anniversary date), I stayed home with Mia while Heath and Bret went to church. Well, Mia kept coughing and coughing and it was hard for her to breathe. Then she started foaming at the mouth. My initial thought was that it was just phlegm, but I got on the internet and it scared me. So, I called the physician on call and he told me to go to Instacare, but it was closed, so I ended up going to Urgent Care in Centerville. They checked us in, asked me what was going on and then had me wait for the physician just for her to look at this picture, and tell me that they didn't deal with babies, "especially babies with a cold that have Spina Bifida".

Let me go off on a rant here for a second...
This is not the first time we've been sent to Primary Children's E.R because Mia has Spina Bifida and the doctors don't know what to do with her, despite the fact that what she has doesn't have anything to do with Spina Bifida. IT'S A COLD PEOPLE! Just suck out her boogers and stop wasting our time! How do they not have the equipment to care for babies? Why do they always use her Spina Bifida as an excuse?
Did you know I went to 3 different pediatricians when she came out of the NICU and called 3 other ones before I found one that was "comfortable" caring for Mia?! She's a BABY!! 
I realize that her Spina Bifida does make her a bit different because she has more "needs", but honestly, sometimes it makes me think that the doctors out there don't know what they're talking about. What did they do at Med school?!
Some of my annoyance towards all these doctors that have turned us away because Mia has SB has almost disappeared after talking to a resident during Mia's clinic last month, he said that maybe the reason why they are that way is that they don't get a lot of babies like mine and so they aren't as comfortable with that because they haven't had practice treating them. Well, that kind of made me feel better...But this urgent care visit made me feel annoyed again.
Ok. Rant over.

So, I go get Heath, and Bret's grandpa comes over to pick Bret up, and Heath, Mia and I head over to Primary Children's E.R.
On our way there Heath said, "You know, if we have to come here any more times, we're going to start making friends there."

and guess what?!

WE DID!!!

As we were checking Mia in, I saw another couple that had a car-bed just like the one Mia went home with. I though, I bet their baby has Spina Bifida. When the nurse asked me if Mia had Spina Bifida I said, yes and the couple overheard and they turned and looked at me. I KNEW IT! Heath took over talking to the check-in nurse and I headed over to talk to that couple.

Me: Does your baby have Spina Bifida?!
Them: YES! Yours does too right?!
Me: YEAH!! Oh my gosh! Can I give you a hug?!*

*I know that's weird, but it just felt so good to see another couple with a baby like ours. I felt like we were kindred spirits. We understood one another and I understood the worries they were going through. It just feels good to know --in the flesh-- that there are more of us out there.

Their daughter has a lesion similar to Mia's and they had just gone home. Their daughter was 10 days old and she started leaking spinal fluid from her back. That's why they were back. I felt for them. Honestly, the healing process is really stressful. We exchanged phone numbers and I gave them the links to the facebook support groups (because you really do need support in times like these) and we parted ways. It was really nice to meet them. Oh and she did let me give her a hug :)

The rest of the E.R visit went like this,
-Nurse comes in, takes vitals and asks us what's going on (10 min)
-Wait (30 minutes)
-Repeat the same information to 10 different people (1+ hours)
- I was right, the foam was just phlegm. So, they suction her out (less than 5 minutes)
-Getting discharged (30 minutes)

RIDICOULOUS! Right?! 

I want one of those suction machines at home so I can just do it and we don't have to waste time driving, or at the doctor's for her to be able to breathe properly.

We got a prescription to the respiratory clinic. On Monday we went to her pediatrician to be suctioned and then at 2 in the morning, she couldn't breathe super well so I went to the Primary Children's respiratory clinic for her to be suctioned. She's doing a TON better! She can actually cough without throwing up, or turning super purple. YAY!

Okay, now here's what you've been waiting for, pictures of my baby girl!

Right here she's resting, but she lifts her head and looks around. She's so strong!

Also, did I mention my mom left? We love and miss her! She's so pretty and she looks great with her grand kids. 

See how cute she is?!! Nothing scary about her. I love my baby girl.