MRI

Hey annabeth I am have a nervous breakdown out here on the floor in the waiting room just so you know. I was going to take a shower to kill time but I just can't and that coming from me is totally weird just so you know because I'm a shower freak I don't like to be icky. So this morning at 0655 you pulled out your iv you didn't bleed they don't know why you should have been bleeding they are concerned. We walked down to the MRI floor they took you from me screaming they said I could wait till you were asleep and give you kisses but they didn't let me. They said they had to put a breathing tube down your throat and give you oxygen and put in another iv then put you under the anesthesia. But you were in anesthesia for a really long time the board says 0737-0852 it should not have taken that long in anesthesia I'm freaking out that something happened. I can't get a hold of your dad either. Please be ok in there baby girl your sisters daddy and I need you. I can't stop crying my heart is pounding and I want to scream and yell. I love you baby Moon!!!!

Anesthesiologist

Ok so it's been a few days sorry but we seem to stay pretty busy in hospital. So so far you had some blood work, ultra sound on your organs, a cat scan, and an endoscopy. They had to put you to sleep and now I will have that vision in my head for the rest of my life. One minute you were squirming and moving and as they slowly added the medicine to your iv your body stopped moving and your eyes stayed open looking straight ahead as if you were dead I freaked out and started bawling. They sent me out of the room. I paced the hallway and it seemed like hours but it was probably only fifteen twenty minutes. The doctor came and told me your belly is completely filled with puss and that you have gastritis. They quickly prescribed prevacide and a super hypoallergenic formula. You seemed to do better but then today you seem not all there in the head. So I'm not sure what's going on. In the morning at 7 they are coming to get you and take you downstairs and putting you asleep again to do an MRI that procedure will be about an hour long. The cat scan revealed your ventricles were in fact extremely enlarged with a ton of fluid on the brain. So tomorrow we will find out if you need brain surgery. I am totally freaking out and I just want to take you home all better already. Lorelei is lost without us home. Lorelei I love you so much you know you are mommys best friend. I will be home soon with baby sister I promise. I miss you so much and I miss isabella. I can't wait to come home and I know annabeth wants to sleep on her own pillow. We want to sleep in our bed all five of us. I am gonna get to bed we have a long day ahead of us. I love you Lorelei Moon Isabella Moon and Annabeth Moon you are my lifeline.

Ambulance ride

So I missed yesterday's blog because we were at Barton hospital all night. So here is what happened yesterday. 11am was your pediatric appointment and right before we got there you puke a ton of milk and bright red blood. Dr ehmann said she wasn't ok with that so she was going to try and get a hold of the upper gi doctor and the gastronomic doctor and she would call me later with a plan. So after we left there we went to Costco and got food and you and your sisters those dresser things with baskets for drawers. Then we went to get your dads eye surgery. After his surgery we went to Reno we needed formula and other stuff but about 530 dr ehmann called and said we needed to go back to Tahoe and go to Barton er and get checked out then be sent to sutter or uc Davis hospital. So we rushed and got what we needed drove home and packed. All the while I'm crying and your sisters and daddy. Ms.chris and mr Jim came and got us at home at 8pm and drove us to Barton they stayed there with us. The nurses took almost two hours to find a vein to hook you up to iv's I was bawling and in hysterics. They wouldn't let me feed you. You were screaming and there was nothing I could do. You cried for hours your daddy was at home panicking. Then the time came at 3am they put us in an ambulance and drove us to sutter memorial hospital in Sacramento California. Now we are here. I finally got to feed you I should be sleeping but I can't I'm in a unfamiliar place really far away from home. I'm scared and want to go home. I miss your daddy and your sisters. We have to share a room with strangers I don't do well with strangers. So now we wait till a doctor gets here and starts doing tests more stuff not fun. I wish your daddy was here, but ms Chris and Jim are downstairs they will be up soon :) I love you Annabeth and pray the doctor finds the problem quickly and fixes it quickly and sends us home quickly. I want to go home and I know you do to!!!!

Good Day

Well today we didnt have to go anywhere it was amazing :D.  Lorelei you were not so nice to Isabella today. You kicked her in her back pushed her down and even took her toys from her. STOP IT! Your sister loves you and wants to be just like you so please be nice to her. Annabeth you did fantastic all night with no vomiting and just one spell this afternoon with just a speck of blood. That speech therapist at Barton in Tahoe really knows her stuff I did all of her suggestions and she is really helping. I am glad she felt that the crazy lady from Easter seals wanting to put in a feeding tube was wrong well at least just grasping at straws when she had not had any tests done or tried anything new. That Easter seals lady too did not even want me to see the speech therapist in Tahoe she said she doesnt deal with Barton and they dont know anything about children and are not qualified to treat you. Well that was all a bunch of bull. The speech lady (Susanne) even called me today to check on you what an amazing doctor. I love Barton hospital I wish we lived in Tahoe so we could be close to all of the doctors that truly care and not treat you like and experiment. So anyway today was fabulous you girls. Thank you for helping with the chores and thank you Lorelei for always being my friend and my amazing daughter you always help me when I need it most. Tomorrow we go see the pediatrician in Tahoe for Isabella's  year check up and shots and Annabeths check up then your dad gets eye surgery. Its going to be a long day so I will make sure to pack you lots of snacks and crayons and paper. I love you Moon babies I love you so much everyday you make me love being a mommy more and more. Hopefully I can buy a nice camera soon so we can go and shoot the Moon and that will be our girl thing we do just as mother and daughters together photographing the Moon with each other. Maybe even one day we can put a book together of the Moon girls photographing the Moon :D I love you babies goodnight

Hope

So we went to Tahoe at 7am this morning for your swallow study and your upper GI test. Your xrays looked good no crazy deformations in your throat or stomach. I was pretty excited. No aspiration into your lungs either which is super rare for children with your disease. So I was even more excited. You were a true solider during all of the tests and not being able to eat for like 6 hours. You did so well I was so proud of you I wish I could be more like you. The speech therapist who did your swallow test said whatever doctor suggested a feeding tube was really rushing the gun without any proof other then vomiting. So we have a game plan of how to feed you and when to feed you and just monitor it and see if you start packing on the pounds. I do have to say that you have not even vomited once today just by listening to her suggestions. All in all it was a pretty good day for you. I do wonder now why you have a chronic cough I hope its not like pnemonia or anything. Thursday we go see your pediatrician so we will collaberate and see what she says. I love that you have the most amazing pediatrician in the world I would not trust my children with any other doctor. She always does her research before making a descion and realizes all children are different especially you Annabeth :D Tomorrow you and I are jsut hang out with your sisters and do some baking and floding mounds of laundry its almost a dream that we actually do not have to leave the house lol. Have I told you how much I love you and how much you have proven every doctor wrong. You are a rare Trisomy case and proving all the logical answers fro Trisomy 9 inaccurate that they really do not know anything about it. I am sure God has his hand in there somewhere :D he and I have had some serious yelling matches :D I hope he doesnt reprimand me for it lol. Today was a day of true hope and made me smile and take a moment and laugh today which isnt something I have done in a long time. You make our family perfect Annabeth, your sisters adore you. Thank you for letting me be your mother I truely am blessed. Hugs and kisses to my Moon babies, Love mommy

Another doctors opinion

Wow I don't know how much more I can take. Today we saw yet another doctor. This one wants to put in a feeding tube! So now we have three doctors that want to put you asleep and you are only three months old. One to do a cat scan, one to put tubes in your years, and now a feeding tube. I'm not ok with any of this! On our way home from the appt today I had to drive erratically and speed fifty miles an hour through a residential just to find a place to pull over because you quit breathing because you were vomiting profusely and with much blood. It went on for about five minutes. I literally peeled out and slid into an office buildings parking lot blocking the entire road. Tomorrow we leave at 645am to go to south lake for your swallow study and upper GI test. I'm tired I'm so tired. I have to take you to appts everyday literally every day, clean, cook, laundry, pay bills, find money to pay bills, take care of your sisters, all the animals, stay up all night because either you or your sisters are up crying through the night, all the while holding you because you need me so much and that's ok that you need me I love that you need me, I'm just tired and stressed out. I love you Annabeth I love your sisters and I love being a mommy. I just want it to get easier. Goodnight my Moon babies I'm going to try and get about an hour of sleep before I get up at 5am xoxoxo

I love you

Oh Annabeth what a horrible day today has been you have been so unhappy and you puked a lot with blood. I'm frightened. Please don't leave me. Your sisters your father and I need you! Friday my good friend Ana Beth whom I named you after lost her baby at 20 weeks pregnant and my new friend in Carson lost her baby Friday too she was 5 months old. I'm sad I'm heart broken and I'm terrified. I love you baby so much. You and your sisters are my everything. Please fight please stay please!!!

lazy day

Hi girls today was pretty uneventful. Just a day of Annabeth being fussy and not letting anyone put her down she vomited a little blood not much and you two wow could you girls be nice to each other geez. Lorelei you are always just so mean to your sister quit bossing her around. I love you girls with all my heart I love being your mommy. goodnight my Moons