Overwhelmed with emotions

This coming Saturday, May 7, at 2:15am marks the one year anniversary my water broke on Baby A (Ayden) at 20 weeks 5 days and I was hospitalized for 25 days fighting to keep them in and failing. I have emense anxiety building up more and more as the day approaches! I miss my little Ayden more than words can describe! Everyday I look at Brielle and wonder what he would be doing. What would he look like? Would he be rolling too? How long would he have been in the hospital? Im sure sicker than Brielle. Maybe it was for the best god took him. NO NO NO NO NO! How could I even think that? Because I dont know what the hell to think anymore. I am so torn with emotions and I just dont know where to turn anymore. People keep saying that I need to look at my outcome and I have Brielle. YES I do! But I dont have Ayden. Ive said it before and I wont change my mind set. It doesnt take the hurt away having Brielle. Im missing one baby. Im missing a car seat. Im missing a crib. Im missing a baby boy in my arms. I shouldnt have a "cubby" for his remains in my living room. I should have a bouncer! Why did my body fail him? Why did my water have to break so early? Why did got have to take him??????? WHY WHY WhY!!!! I just dont fully get it. I know I will never have the answers. But damnit, Its time for some closure. Ive put on this happy face for everyone. Noone truly understand the real me. Not even Josh. I dont think he knows how much this kills me. Even he tells me that I have to be thankful for the outcome we have. I am beyond happy that Brielle did so well! All the doctors we came in contact with told us the scary outcome we could have. She ran the other way and defeated all the odds! But why couldnt Ayden have defeated those odds??? I am not the same person I was a year ago. In many ways I think this has made me a better person. But inside I want to crumble. Some days I just dont have it in me. I constantly wonder if I could have or would have done anything differently if Ayden would be here? If I would have went in on Monday instead of waiting til Thursday when I sensed the infection, would it have saved my waters? Maybe if I would have laid more still, he would have survived? Maybe I didnt drink enough fluids? What could I have done differently????? This is not the happy ending that we so deserved. We want more children, but Im scared freaken shitless. I CAN NOT, I repeat, CAN NOT do this again! I stayed strong the first time. I now have a baby at home. I cant lay in bed again. I cant emotionally do it! Ive been doing TONS of research and almost all of it says it is more likely to NOT Happen again, but what if. With my shitty luck, it would happen again! I cant do another NICU stay. I cant be on bedrest again! I am quite content with just Brielle. But I know deep down in my heart when she is 12 and we are beyond child bearing years, I will regret this decision. Josh wants kids like yesterday. It breaks my heart that we arent on the same page. He didnt have to lay in that same small bland hospital room for 25 days straight not being able to shower or even pee in a toilet!! He got to atleast leave. Im not saying it wasnt stressful on him, but it was just as stressful mentally on the both of us. The toll that laying flat for 25 days takes on a persons body is immense. I carried Ayden. As a mother I already had that bond with him. I now regret never getting to meet Ayden. I dont remember the hospital even asking if we wanted to see him. According to my father, we didnt want to. He was not in good shape. Part of me is grateful I have memories of my own and part of me is crushed that I just let him go without saying goodbye. Maybe thats where this no closure is coming from. In the beginning we were So preoccupied with getting Brielle to the stage she needed to be that I didnt even have time to think of my grief. We grieved at the funeral. Then we had to put on our good energy hats and go up to the NICU for our other child. I didnt want her to sense mama was sad. She needed me to be in my best spirit. Now that life is balancing out and we are settled into a routine and Brielle is doing OUTSTANDING I have the time to think. Im hoping after June 1 there will be a calming in my heart. I have such anxiety right now about may 7 ( Water breaking) and May 31 when we couldnt find Aydens heart beat and June 1 when Brielle was brought into the world WAY Too soon and I was scared outta my mind! Im hoping after June 1 I can breathe! I will officially have made it thru the first anniversary of the most traumatic bittersweet event in my life...........

March for Babies

We had our March for Babies (dimes) walk yesterday. The weather was HORRIBLE! Around 40 degrees and down pouring raining and snowing. Needless to say we did not walk. Just from walking to the building to register to walk, our feet got SOAKED. I also did not want to take Brielle in the cold and get her sick. So our group just hung out inside. We then went to the mall and did our walk :P We raised $400! Thank you to all our friends and family who donated! I made a poster for March for babies and it was displayed there along with about 8 others. There were 4 babies out of the 9 that did not make it. I was choked up reading the stories. One was twins (Bryce & Breanna) born at 23 weeks. One was 1lbs 6oz one was 1bbs 2oz if I remember correctly and did not make it. They lived 40 minutes in their parents arms. How sad! Kills me! They reason that they probably died in their parents arms were because they were born before 24 weeks! In my opinion if a baby comes out breathing and a parent wants to try to save that baby, then the baby should atleast be given the chance to survive. I just dont know if I could live with myself knowing that nothing was done! I know in the hospital we were given the option to terminate. We were given every worse case scenerio there was. Look where we are today. We have a pretty healthy, happy, miracle! a 24 week miracle! a whooping 1lbs 6.60z miracle! All things are possible!! I just wish there was awareness. Not that I'm saying all babies are the same, but if you dont give a child the opportunity to show you what they are capable of, how will you ever know??? As long as Brielle was on the vent, noone could tell us what her lungs were going to be. They are pretty good! So good she kicked her oxygen not even 4 months after coming home!!! Our pulmanologist was pretty impressed given her background!! So I hope that the awareness gets out there and these babies who have no say get advocates thru their parents!! I am getting up the courage to write my story on the kanalen page. Soon enough!

FuN TiMeS

Yesterday we had to drive 100 miles to Milwaukee to see Brielles Pulmanologist Dr. Just like the last time we had to go down there, there was a snow storm! We got a total of 12" and lots of ice and sleet! It was NOT fun! But anyways my mom took off of work to come with me and Brielle! The appt went great!! They took her off her pulmacort breathing treatments!!! No more treatments unless she gets sick!! She is a whopping 15lbs 3.8oz!! 24.5" long! She is growing nicely and in growing so big her lungs are getting bigger and better!! So now they will see her every 6 months and keep monitoring her lungs to make sure nothing pops up!

After our appt we met my cousin Angie, who goes to school at the hospital, for lunch. It was wonderful!!

After lunch we had to leave...right? So we walk out into the parking ramp which is connected right to the hospital and get on the elevator to go to our car. Well easier said than done. We didnt know what level we parked on. Neither one of us checked! So we go to 4 and theres no cars! Mom asks me if I remembered to take out the keys...DUH! She thought the car was stolen lol. So then we go to level 5. Well WRONG! That was just windows. Then to 3. We get off but our car was no where to be found! We get back on and go to 2, but thats the level we went to to get to the hospital. So that wasnt it either. We start to walk to ramp hoping to run into our car, with no luck!! We are about to get back on the elevator and a van pulls up and asks if we lost our car. We laugh and say YES! She says get in and we will drive around and see if we can find it. So she starts to drive and turns out her and my mom are both Ellenbeckers and somewhere down the line related. Small world! Or is it? We believe Grandpa Art sent us an Angel in a van! :)

Soooo my mom says "O THERE IT IS!" So the lady drops us off at the begining of the row and we walk to the car. News flash! That IS NOT our car! No panic was setting in! It was pretty chilly and we were walking and I was just carrying Brielle. We walked around the corner and there it was!!! THANK THE LORD!! We laugh about it now and we laughed quite a bit while it was happening but when the van pulled away and it wasnt our car, I admit, I got alittle worried! I called my husband and he could just laugh! What else was he to do? Its all funny now!!! DUDE WHERES MY CAR??? Thats our catch phrase now! hehe

Nothing New here!

Well...Hmm....Thats about what I have to write about! lol. I feel bad that I dont post as often as I used to! But to me, our life is pretty boring, yet busy!! Tomorrow we take the road trip to Milwaukee, WI to see the pulmonologist Dr. To me it feels like a wasted probably 2 hour drive since we are gettin 3-6" of snow and sleet and rain! UGH! But I will go and show off my miracle child! All the therapists and Doctors we see lately just cant believe how she is doing for a 24 weeker. She is amazing. We know! :)

I had to go get my check today at work since my purse was stolen last weekend along with your video camera outta my trunk of all places!! Brielle caught sight of a balloon! I've been waiting for the day she would notice that! Well mom couldnt resist and bought her one! She LOVES It! Giggles sooo hard when I attach it to her sock. Its cute! Cheap $3 toy! She has also in the last couple days just noticed mirrors. She smiles and trys to grab our faces in the mirror.

Yesterday Occupational therapy was here and said she is making much better use of her thumb. So watch it. I was pretty disappointed in her response. She didnt check out the thumb until I said something. Last month I was in tears of this thumb and this month she doesnt say ONE word about it!! UGH! Josh is persisting I ask for a new OT but I think maybe I will see one more time and see if it was just an off day for us or what the deal is. I emailed her Physical therapist who I adore and she answered my questions that OT over looked and ignored me on. I dont take lightly to that when thats why you are here! The best interest of Brielle! I am her advocate and her voice and dont ignore me! OKAY rant over! hehe

Brielle is getting soooo good at mastering solids!! She LOVES carrots, green beans, PEAS of all things...YUCK! lol, pears, applesauce, oo and ICE CREAM! lol I gave her some of my blizzard and she was like a little bird! Everytime I put a spoonful in my mouth her mouth was wide open! It was hilarious!!! She doesnt care for peaches, mangos, and bananas are a hit and a miss. Her Speech Therapist cancelled today with the weather and we were chatting on the phone of trying to get Brielle up to 3 jars of food a day. Dr. Kranik said as of June we can pull her off the Neosure 22!!! He would like to keep her on some type of milk whether it be formula or whole milk up to September which would have been her official 1 year due date. Im cool with that! But Im cool with getting her off the expensive Neosure and being about to buy Target, Walmart, or babies r us brand formula!

Brielle is a little ham! She giggles over just about anything! She went to a turkey calling seminar with her dad this last weekend and she was giggling when the guy was blowing the turkey call. I could just imagine that!!! If I turn around really fast and say "HI" or "brielle" or anything really she geeks out and flings her arms and legs and giggles. Its adorable!!

Well little miss is on her belly and mad cuz she still hasnt figured out how to get back! And Im going to feed her corn and sweet potatoes!!! Toodles!

Rock Star

Well not too much going on here. But I still want everyone to know that I am still blogging and figured I should write SOMETHING!

We had Brielles 9 month check up this last Tuesday. She is 14lbs 7oz and 24.5" long. She FINALLY made the charts!! She is 1% for weight, 0% for length and 5% for head circum (42cm) Her pediatrician said she is a "Rock Star" She looks great for a 24 weeker and he could be happier with how shes progressed!! Most babies born as early and sick as she was are usually on oxygen past their first birthday and have had many illnesses. Not this cat! She keeps on roaring thru what she is dealt!!

Wednesday we had her physical therapist, Lisa L come. She called Brielle a "Super star". There are 2 twins that she sees that were born at 24 weeks with lesions on their brains like Brielle has, but they have ALOT more. And they are not doing well :( They wont have much of a life :( I cant stop thinking about those boys! It makes me think alot of my precious Ayden. Dont take this the wrong way, because I wish he was here with me today, but It makes me think of what kind of life he would have had. All the research Ive done, it doesnt look good. He would have been born with little to no lungs and passed away shortly after birth or struggled to breathe and be on oxygen a long time. He probably would have had some sort of brain bleed that would have made him a vegetable. Seeing your child encounter those hurdles is soooo difficult! Our baby hasnt had to hurdle such high hurdles, but I know the lower hurdles hurt so deep I cant even imagine their hurt!!

Lisa took another look at the tightness in Brielles thumb. She said it definately is tight. But after hearing about the twin boys I was taking this with more of a grain of salt. My child is going to be ok. My child has a great future ahead of her. My child will overcome this hurdle! Im not so sure those boys have the same opportunity Brielle has. We have worked thru 9 months of hurdles. And we will keep running and leaping with everything we have! We have an amazing little miracle on our hands. Everyday she flashes me that smile and giggles at the quarky things we do Im just in Awe. 9 months ago I didnt know if we would even be leaving with a baby. Let alone a miracle like this one! She is rolling over and cutting a tooth I believe! Lots and lots of drool!!! She started sleeping thru the night about 2 weeks ago! How sweet that is!! She goes down anywhere between 6:30 and 7 and wakes between 4:30-5 for a bottle and goes back down til about 6:15-7:30. We have it pretty rough!!

Break Downs

Sorry I havent been blogging lately. I have stuff to blog about but I just couldnt. Wasnt in the right state of mind. So here we go.........

Brielle had the hernia surgery Feb 9 and came home SICK. It angered me ALOT since we shelter her as much as humanly possible so she doesnt get sick and miss out on holidays etc. and she needs to have a procedure and comes out of it sick. But whatever, life moves on Right?? I took her to the doctor after a week and they said its just a cold and if it doesnt improve within 10-14 days bring her back. Thursday was 14 days so I brought her in on Friday. Turns out she has her first ear infection. But Dr Kranik said his boy had 4 ear infections by the time he was Brielles age so shes doing pretty good. I didnt even think she had an ear infection because she showed no signs. I did mention it earlier in the week but that was it. He said shes a rockstar! We know! hehe

Now to my mental breakdown.....Tuesday we had speech therapy come in the morning and do a feeding on Brielle and she said her tongue was loosening great and flattening out like it should. GREAT! Then we had Occupational therapy come 2 hours later. Before they came I was cleaning and dumb me decided to spray that can air into my TV back to get all the dust I cant stand out! NOT A GOOD IDEA FYI! My TV threw a fireball out at me. I was so angry with myself for not thinking and I had Brielle in my arms which freaked me out the worst! Anyways move on!!! 10 min later OT showed up and started doing their evaluation on Brielle. Usually she focuses on Bri rolling over and sitting etc. Tuesday she was stuck on handing Brielle toys. She asked me if I noticed Brielle not using her left thumb. I said Uh No??? She said yes when she reaches with her right hand she hooks her thumb around the toy like she should be. When she reaches with her left hand she tucks the thumb under the toy and doesnt use it. GREAT was my first reaction. I immediately asked her if it had anything to do with her PVL lesions on her right side of her brain. The thing that we have been monitoring her for all along...Cerebal palsy. :( The words I didnt want to hear "YES" They watch her left side of her body so much because the lesions are on the right side of the brain which controls the left side of the body. I just couldnt take it. Im sure it was the whole TV thing and then the dreaded CP words but I couldnt handle it and spent the whole day bawling. I know and I tried to convince myself that she has it mildly and noone is even going to notice it unless I point it out but STILL! I dont want my child to be labeled as anything. And I shouldnt get too worked up because being a 24 weeker I KNEW from the start that there are potential problems. And my little miracle has overcome what alot of 24 weekers have not. I am on a board with other micro mamas and their little ones have feeding tubes and hearing aids and glasses and still on oxygen and we dont have any of that. I NEED TO COUNT MY BLESSINGS! Im done crying about it. It is what it is. I took one day off from being a strong mom and now Im back to reality. She is having us massage the fatty part below her thumb in hopes it will loosen up. If it doesnt she will be in a thumb splint. I guess if thats the worst thing that can happen then so be it! But I get very upset when people tell me that! I know its the truth but damnit Im a mom and I have the RIGHT to worry and be upset that my little girl has any sort of problem!

Okay Vent over...........!!

On a brighter (maybe sader) note....Brielle will be 9 months old Tuesday.......OMG!!

P.S. Brielle is 14.4lbs!!!!

Hernia Surgery

Brielle had her inguinal hernia repair surgery yesterday morning. Her surgery was at 7:15am and we had to be there at 6am. The poor girl couldnt eat anything past 12am. So I woke her at 11:35 and fed her a bottle and at 4:20am she was screaming in hunger! I felt sooooo bad as a mother!!! Bri doesnt understand that she cant have her bottle!!! I just couldnt wait til it was time to go. Daddy tried to soothe her but she wasnt having it!! So I decided it was time to head downstairs and PLAY! It worked!!!! Totally distracted her. She would start to whimper but then we would "change the subject." As soon as we knew it, it was 5:30 and ready to head to the hospital!! Of Course, she fell asleep in the car! We got there and was promptly taken back to prep her. Surgery started on time. and by 7:45am Dr Burkett was telling us she did amazing! He said there was a good size hernia sack so it was good we repaired it. They were now going to slowly wake her up. In 15-20 min we could see her. OKay so that was 7:47am when he left me. By 8:15 I was still WAITING! I was going insane!! All I could think of was that she wasnt waking up. I got up to look at the board thingy that tells you where her surgery progression is. Hers said PACU??? What ever the hell that means?!!? I was just going to go ask someone and the cellphone they give you RANG! Hallelujah! The magical words! "Shes ready for you to come back, shes just waking up." I quickly gathered up our stuff and dad and grandma Cindy and I ran back to our little peanut. One of the nurses was rocking her in their arms with some blow by oxygen but when she handed her to me they took it off her. She was starving so I fed her a bottle right away. She took the bottle, made alittle fuss, so we gave her some tylenol from the diaper bag and in 10 minutes she was back to HERSELF. She was smiling and giggling and talking up a storm!!!!!!!!!! I dont think this girl got the memo that she just had surgery!!! Needless to say (not that I need to say it, I think you get the drift) I WAS THRILLED!!! It was OVER! She did AMAZING! We were going HOME! My baby didnt even REMEMBER she had SURGERY! She was SMILING! She was TALKING to us!

We were supposed to be discharged and hour after her surgery, but that ended up being 3 hours. The Drs. one hour surgery turned into a 3 hour surgery. But you cant be mad at him!! They were SUPER nice about it!!! They gave us a $20 gift card to Target for waiting!! How cool is that!!??!!??

Today I went to work since its Valentines day and Im a florist. My mom watched Bri and said she was full of smiles!!! Back to her good ol' self! She is still pretty hoarse due to having to be intubated for the surgery as a precaution. But it should go away in time. She is currently sitting on dads lap getting a breathing treatment and SLEEPING! lol If only you could see it!!!!!

8 months old!

Brielle is 8 months old today (4mo 2wks adjusted)She weighs 13.4 pounds!! She is getting so fun!! I know I say that all the time but seriously I just love the time I spend with her!!She is developing such a personality its hilarious! She learned she can scream, and she uses it to her full advantage (aka get mom to do what Brielle wants her too). She is in her jumperoo right now and learning to use her legs to jump. Yesterday I looked at her and told her to say "mama" well she thought that was hilarious! She giggled and giggled it was sooo cute! She also started baby food! They had me start Oatmeal and/or rice cereal 2 weeks ago and told me to start baby food in a month but she got sick of the oatmeal too quick! I even added prune juice and oatmeal with apple or banana and nada. So I gave her some squash and she chowed about a half jar! She is doing so well with the feedings!

At our nephew, Fishers, Birthday party last weekend he had a balloon bouquet with a packer balloon, bday, and a solid gold star. Josh wrapped his present and had all red stars for him me and Brielle and a gold star for Ayden. At Christmas Fisher asked why Aydens name wasnt on his gifts. Hes 8. So Fisher took his gold star balloon and had everyone at the party write a message to Ayden and let it go. It was sooo very sweet for an 8 year old to have that kind of mind set! He was very emotional as well. Even my 4 year old nephew talks to him and knows Ayden lives in the sky. It just amazes me how we dont let his spirt die. Its been 8 months and I still remember the day like yesterday. I often look at my life and wonder what it would be like to have Ayden here. What would he look like? How would he be doing? Would he be a fighter like his sister? Have an attitude like little Miss? How would our lives be? I still find myself looking at the boy clothes in stores. Something just draws me over there. Im not quite sure what thats all about.

Brielle is grasping onto things like crazy!! She loves to pull my glasses off my face, she will grab my necklace and even sleep holding onto it! She LOVES when we hand her toys and they automatically go in the mouth! She has just started to like frozen teethers! She is trying hard to sit up but doesnt care to roll over. Im starting to wonder if she will ever roll over?