Crazy Busy Times

The first  two three weeks of June were insane. It was madness! Appointment after appointment. Our schedule was jam packed! The 4th which I posted about that day was Natalia's Special Day. (This is what I plan on calling it!) I think I will do a small paragraph of each day...

June 5th at10am

Aaliyah had a NICU (Neurology) Neonatal Follow-Up appointment. Now the first one back in February didn't go well, she would not cooperate and the therapist wanted Aaliyah to work with her and anyone who knows Aaliyah knows... That would not work. This appointment the therapist was awesome and let us work with Aaliyah. She would just say try this, and we would do it. She also watched videos I have of Aaliyah doing things and gave her credit!! The doctor found she was doing better and we had all the services we needed in place. The only suggestions was (BESB) which they felt the ophthalmologist would recommend the following day and a new hearing test. In closing pretty good.

June 6th at 10am

Aaliyah had her ophthalmology appointment and it was eh (I know it isn't a word. ). She does no have nystagmus which is good but she is not seeing as well as we like. (We suspected but hoped.) What I understood was that her optic nerve is good but the fibers in the nerve (yea I am not technical on this not claiming to be) are not. That about 80% are damaged so that would cause her to have crappy eye sight but when you add in her neurological conditions it amplifies it. She can see but the image goes to her brain very jumbled and her brain has a hard time figuring it out. So now we continue to work with her as we have been and in August/September we should hear back from BESB.

At 2:30 we met Maria from InSpire Me Photo for our summer/why not  shoot... Here are some of my faves...

 We also had birth to three meet us in the park. Yes a lot of pictures but why not. The next day she turned 9mnths and those pictures get their own blog post.

June 10th at 9am she had her 9mnth appointment honestly it was not a major thing since we had even bigger things coming.

At 10:45 I had my own appointment.

At 12:30 we and overnight EEG. Now that was NOT fun. Aaliyah was not feeling secure and would not sleep in the crib. The good news was she is clear of seizures! It also meant surgery would go ahead Friday.

June 14th at 11:30am we were checking in. At 1:22pm she was taken back for her surgery about than is when I lost it. I had already lost her sister and like any surgery going under is a danger in itself. At 2:16pm we had word she was out of surgery and we could see her soon. At 2:27pm we were with her it was only about 10minutes but it felt like forever!!

Around 3:30pm we finally made it to a room. They gave her morphine for pain and around 8pm they would start certain steps to prep her to feed through the tube. 8pm came and something was wrong with the tube. The doctor came in and even he was stumped. He put a long skinny wire down the tube and it was fine. He than put a thicker one down, and you could hear it hit plastic. After more fidgeting they stopped and we were told she would have to go in for an xray and that more than likely she would have to go into surgery again! We were both beyond upset because we decided to do this, we knew we were right but it was our choice.

June 15th at around 10:30am she went down for the xray and they determined she would be going in again. We had to wait till they had an opening which wasn't till 5:49pm! At 6:16pm she was out and it was working this time! So than we started the feeds overnight. Next day she had to get through to FULL feeds to go home.. She did the first one but they tried giving her the next one and hour later... yea puked up all over 10mins before we went home so we had to wait longer for us to break free. So on Sunday the 16th we finally headed home at... 7:15pm!

June 17th at 10:30am OT with Birth to Three

At 11:30am PT with Birth to Three

At 1:10 pm... The visiting nurse came to visit and Aaliyah finally weighed in at 13lbs 1.5oz!

June 20th at 3:45pm PT 

June 21at 1:15 I went in for testing for myself.

June 25th at 1pm

June 26th at 10:15am she had PT with Birth to Three.

Aaliyah has made some drastic changes in such a short time with the tube. A new baby things she wouldn't tolerate she now does with barely a complaint. Hoping it sticks.

So that is it so far and tomorrow she has a follow up GI appointment at 3:20pm. I will just add an update to hear after that appt. 




GI Update!

They are happy with her progress and are on board to slowly increase her intake.

The nurse came again and she is up to 13lbs 11oz! 1lb 2oz gain in 2weeks 4 days!

It's amazing the difference. Not just the weight but everything. She's napping better. She is sitting up when we sit her. She's finally using her arms some. Yesterday I was laying on the floor on my chest and wiggle crawled till she was on my face. I put her back and she than wiggled off so her feet were on the ground and her weight on me. All of a sudden she stood supporting herself on me. She's a long way from sitting on her own or trying to stand on her own but she's getting there.

What today really is...

So today what do I say? It has been an emotional day. I have not broken down as much as I thought but I have had moments. I grieve and I believe I always will but at the same time I am happy. How can I not be? I could have very well lost both of my girls. Don't get me wrong as I have said before Aaliyah can NEVER take Natalia's place but I could be grieving for both. I could be the mom who has no living children but I am not I have Aaliyah and even if that is all I am blessed with I will be happy. Many don't know that I had given up, I really felt that we would not become parents. I swear a week or two later we suspected but how could it be I wasn't even late. We confirmed but didn't want to get to excited. Than we found out and the rest is history.

I asked that family and friends light a candle in her memory and the response is overwhelming.It seems like the world is lit up just for my sweet Natalia. Some have been incredibly creative with it. Some have made sweet statements. We feel so blessed to have such a wonderful circle. As we continue to recieve candles we feel humbled and so beyond loved.

The one thing that haunts me is a single thought that kept running through my head when this all happened, her tiny body was inside me and was not going to leave until I had to deliver her sister. The longer I kept Aaliyah inside the longer I held onto Natalia. I didn't really have to say goodbye. I knew she was gone but I had to hold her to trully say goodbye. I want today to be her day and our wonderful friends and family made it so.

Natalia my sweet baby girl, my forever baby, I love you and miss you beyond belief and know you will always be here with us. In mind, in spirit and in your sister. I wish I could hold you and tell you I love you but for now that isn't possible but some day we will all be together again as the family we should have been till than rest well sweet angel of mine.

Today is not a day of mourning but a day of remembrance.