Whoops! It has been awhile!

It has been HECTIC, which I am not sure covers it all. Aaliyah made it through her appointments and everything is over all good. She still has catching up to do in the weight department. Developmental she is progressing but of course still behind. We are going to be looking into equipment to help her. :) Aaliyah is doing great over all. She is a trooper, that doesn't give up.

Her birthday was amazing! She had a good day, so good she slept most of the next day!!

These are just a few from her birthday. At some point I will upload some from her actual photo shoot. :D

 One of the exciting things that has happened is we are expecting a THIRD little girl! In April we will be welcoming Melody Elisa. That is it for now, this pregnant lady is tired...

One Year

So it has been a little over a month since I last posted. So many things have happened but nothing I am talking about yet. I will tell you some of what we have done...

Truth be told, we have been resting a LOT. So many appointments catches up with you. We knew September would bring a mass of appointments so we took it easy. Today is September 11th, and so far this month Aaliyah has had 5 therapy sessions and 1 doctors visit. All is going well and we have more coming so when we are done with them for the month I will update than.

September 7th was a very special day in so many ways. Most importantly Aaliyah turned one that day. I wasn't so much a birthday as a celebration, a celebration of life that was almost lost. A celebration of milestones. A celebration of unity. A celebration of family. Aaliyah will get a separate blog post once I have her birthday pictures.

The other side of the coin was that it had been one year since we held our sweet angel Natalia. One year since I held her tiny hand between my fingers and told her she was perfect. One year since I looked at her tiny feet and knew I would never see her walk. One year since I cried knowing that this would be the last time in this life to hold her. One year since I kissed her tiny head and said I loved her. One year of laying in that recovery bed, sleeping with her and knowing I would never do it again. One year that I didn't get to watch her grow. One year I didn't get to watch her smile. One year I didn't get to watch her laugh when her dad made silly faces. One year of not seeing her interact with her sister. One year of not seeing her try her first food. One year of not seeing her roll over. One year of not seeing her lift her head. One year of not seeing her reach out to us. One year of not holding her in my arms and just enjoying the moment. One year that part of me felt like it was missing. One year of missing my sweet baby girl.

Natalia,
It has been one year since I last held you, and in those 365 days not one has gone by that I didn't miss you. I will always miss you. You are one of the greatest gifts I have ever received and will ever receive. No one and nothing can ever make up for the piece of my heart you hold. I will always say your name, because you are my daughter and you matter. I will always protect your memory, because you matter. I will always keep you a part of our lives because you matter. I love you my sweet angel and always will because you matter.

Love your Mami forever and always.

Setting Goals For Myself

Almost everyone sets goals in life, some minor, some major. As a mother you may have minor goals, even if it is just getting your kids out of their pajamas. I have goals! Sometimes it is as simple as try to pump before 10am! Today I want to talk about setting goals for yourself, that don't directly relate to your kids.

Right now my long term personal goal is to take my new undertaking as a Thirty-One consultant seriously. I was nervous about doing it but in a short span came to see I can do it! No I won't be making thousands of dollars in sales but I will be trying my best to succeed. Right now I set a goal and  have 5 days left! Guess what ridiculously close to making it! ;) Feel free to ask me if you want to order.

Another personal goal... take a long hot shower. Quick showers are not relaxing! They just make sure you don't stink. It's funny how you can take a long hot shower for granted before you have kids.

The BIG one is to finish getting this apartment together! We are so close to finishing, I am hoping that by tomorrow the living area will be done. Than comes replacing certain things and most importantly organizing what we do have!

As a side bonus Aaliyah in the pool. She LOVED it!

What Dreams Can Do

I had a dream last night and man it was painful. In it some people were stealing babies and they took the girls. I was going crazy searching and I would get close but not find them. I felt like I let them down, I felt such intense pain. I finally awoke in a panic and started to look for the girls. Than it hit me only Aaliyah was here. Natalia is not here, I did lose her. 

At this point it is almost 24hrs since I had and the pain is still there. I feel a deep sense of loss, of failure, of anger, of helplessness. I could go on but it's hard to explain the full range of emotions I am feeling.

Told a few and most were just sorry supportive but of course did not understand. Some truly felt my grief, and I could tell they knew what I was going through. Now some kind of sort of brushed it off. They were sorry but barely said that before they continued on something else. I left it at that because I knew they just didn't know what to say. Won't lie it did sting a little, but I understand. 

The dream really shook me but I think with all the planning for Aaliyahs birthday party it is just bringing up a lot of emotions. Over all I am doing good, better since I took a step back from somethings. Many can not understand what I am going through. You can experience the loss at many stages but for the most part you "deal" with it right away. I on the other found out June 4th and didn't truly get to say goodbye until Sept 7th,that is a long time of "pretending" everything is okay. Now things are calm and I am not pretending. 

Random Early Morning Thoughts

Even though I have a headache and life is crazy I can say I am happy. I will always struggle with Natalias loss. How can I not? She is my daughter, my first. My Baby A, my sweet Froggy A, my angel monkey. I bet some wonder why I say she is my first, why because I saw her first, she was Baby A, and she was the first one they took out when I had my csection.

I struggle as Aaliyah's birthday draws near because it should be a celebration of two birthdays. It will be a bittersweet day. While some may not understand EVERYTHING will always be bittersweet but it doesn't mean I am not happy. Sometimes you need to step away to truly heal and find the peace you need. Sometimes seeing something day in day out just makes it worse. If someone doesn't understand they never will and honestly I hope they don't ever have to understand what I went through.

Just because I struggle doesn't mean that I don't look forward to it because I do! See for us it isn't just celebrating the day Aaliyah was born. It is celebrating she is alive. Celebrating that despite the tragic loss of Natalia we have Aaliyah. We could have lost them both. Things like this can destroy couples, families and despite it we are stronger. We love each other and have I think found each other in a different way, strengths we didn't know we had. We have faced challenges and adversity but nothing compares to losing our daughter.

Well that was all and forgot to post it so now this is Random Early Morning Thoughts in the afternoon!

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. 

Our Day of Celebrating

FaceBook Status Today:

"One year ago I was so sick and in so much pain from a migraine I called Robert home to get me to my obs office. They gave me something to help with the pain and said if it didn't get better to go to the ER. To me the most important thing was to see my girls and know that they were okay. I saw there tiny bodies and their strong heartbeats and I felt a little better. From the looks on the the tech and OBs face I knew things were not looking good but I continued to hope, I didn't want this to be the last time I saw my girls alive. Who knew that literally seven days later Natalia would be gone.

Natalia my sweet baby girl, not a day goes by that I don't wonder if there was anything I could have done to keep you here. You and your sister were a lifetime wish come true. Now here we stand with her and you are just out our reach. You gave me so much and I will never forget you. Someday we will meet again but till that day May 29th will be a small celebration of your brief life and what you mean to us."

 

Today we choose to celebrate Natalia's short life because no matter how brief it was she brought immense joy and simply put she matters.  I will not discuss what came after this day yet, that is for my reflection post next week. Today I am going to post some important moments, happy moments none of the sad ones.

1) The moment we confirmed I was pregnant. We didn't know it was twins but we knew that I started having symptoms at about 3wks!

2) First Ultrasound! How amazing, how shocking to find out we were carrying identical twins. Our Froggy A and Froggy B

3) Seeing their actual little faces and hands. Seeing those tiny little beings was so amazing.

4) Watching how the little babies almost always were laying on top of each other or head to head.

5) Finding out they were girls! Oh my did that make my day. 

6) Getting to the end of the pregnancy and still being able to hold Natalia. I held my baby girl. 

Next week will be a hard one but we will get through.

 

A little Update

At Aaliyah's six month appointment we found out while she had gained some weight it wasn't enough. We started to make some changes that are helping her but it still is not enough. After much thought, research, and talking to other parents and doctors we have decided to go ahead with a surgery to put in a G-tube. It will be there to supplement her feeding and no we do not know for how long. It could be months or years. Only time will tell. As of now the surgery is set for June 14.

I few weeks ago I witnessed a small episode, then a brief one the next day. I caught on film. That Friday she proceeded to have several in a short time. This time her therapist was there, and we agreed she needed to be seen. Aaliyah saw her pediatrician that afternoon and she immediately put a call in to her neurologist. Within an hour we had an EEG scheduled for that Monday. When we went in foe the results we found out Aaliyah is having “infantile spasms”, a mild form of seizures that if left untreated could become full blown seizures. She started a medicine that is working and we will be doing four more weeks. 


Yesterday she had another EEG, it  was better but not normal which is not bad. Okay so we continue the crappy med that makes her a demon spawn from Tartarus. Seriously can not put her down at all. It causes insomnia and a whole host of other crazy things. Two weeks and we start to taper it off. Two weeks after that we go back in.

She will be starting an actual seizure medication for the foreseeable future. In part because something is going on and also as a kind of buffer because she is at a very high risk for bigger ones. The medication also helps with the infantile spasms.

Now we are waiting for approval on a longer EEG that is overnight in the hospital. We could wait but both the doctor, Robert and I agree that the 45min scan can only show so much. I also feel that considering we know she is having mild seizures I would like to have this on file, if they ever get worse. Give us a base line for what she is like. 

For now that is all. Next month is crazy time for us so we shall see how the blogging goes.

The Little Things You Take For Granted

I have several blogs that are sitting there started but not finished. I am excited about them but the other day something happened and it made me cry. A cry a long time coming and needed.

I had cried when I first heard the diagnosis but it was more out of shock, the doctors were very cut and dry at the time. This was different, this was for what my daughter can't do. I am not talking the distant future I am talking about right now. Yes every kid develops differently but keep in mind you KNOW they will do it at some point. I don't have that "guarantee", I have faith that she will do it at some point.

So what happened that made me cry? I was laying on the couch with her, she was sleeping on  my chest. Her hands flat against me and I lifted it to kiss her palm. Than it hit me...she has never once lifted her hand to touch my face. Never once lifted her arms for me to pick her up. We have only heard her laugh the one time. She smiles but it can go days before we see it again.

I am happy that if you sit her up, she can hold it for a little bit. I am happy that she will try to stand. I am happy she is trying to army crawl. I am happy when sometimes if we are holding her and talking to someone else if we turn and look at her, a smile lights up her face with pure joy. I am happy she can roll, mostly from tummy to back but hey she can do it. Most of all I am happy we have her. her progress may be slow but she doesn't give up and she will get there at her own pace.

So please, don't feel scared your child hasn't it made it to that point, be happy that they are healthy and happy. At some point they will make it to where they need to be.

ETA: I never even touched that I will never have these moments with Natalia.

Easter Shoot

Our Easter Shoot went okay we were all either sick or getting over being sick.

Elvis