Losing it

There have been several times in my life where I lost my temper. Anybody who knows me knows I have a mouth and I know how to run it. I tend to have a flair for creating new words and they are words that when typed are censored with fancy symbols like this: !@#$%^&*!
Last night, AR slept in the bed with me and she did pretty good. [[[[I NEVER let her sleep in our bed when she was newborn because I was too scared she would suffocate and I myself never could sleep from the worry....she would sleep in her nap nanny next to me]]]] But since we have been admitted here she either slept in my arms or on me or she hasn't really slept. So she cried a whole lot less last night. And you know how hospitals are, they are in every hour to do some check or beep something so you never really sleep anyways.
Well, this morning, they were in at 4:26am to check her vitals{{which is totally redic taking her blood pressure every 4 hours but thats another story}}and I was like well I have one more nap then we will have a steady stream of people in and so I better go back to sleep, well i was woken again and looked at my iPhone and it was 4:07am....WTF? I thought I must've been delirious earlier but about 30mins later the phlebotomists came in and I knew my phone must be wrong. So that irritated me. Then, the stream of nurses getting vitals, starting meds, and doctors come in until 8:30a. So finally we all climb back in bed and decide to try to catch one more nap for the morning, it was cloudy outside, clean diapers, a fairly quiet hall and we all fall asleep, probably about 9am.... 9:31am some female{not a lady} comes in and starts changing the trash bags, yes the trash bags. there are three, none of which are 1/10th full and they are NOISY. and it was RIDICULOUSLY loud and obnoxious and completely unnecessary. So, I guess you could say I woke up on the wrong side of the bed. I have never wanted to stab somebody so bad in my life.
Until 12:36pm.
Michael was in a conference call with a guy about his practice and my dad was here and he suggested I go out for a walk to get out of the room for a bit. So I didn't make it far and my dad called me saying they wanted to take AR for a X-ray to recheck the placement of her feeding tube. They took one after they placed it and said the line was a little coiled in the stomach and wasn't as far as they liked in the jejunum but that they thought it would straighten out. Did they want to take this X-ray before starting the feeds- nah, that was not necessary. For whatever reason, they wanted it now....2 hours of drama and no changes later we still have the same tube and a mamma with some high blood pressure. Appearantly as long as she is not throwing up the feeding tube is fine. WHATEVS.
After that, my dad and I drove to my house where I haven't been since Sunday afternoon. And I got some of her button front sleepers and a few other things for me. Then, we picked up some take out from Tazikis....omg...so deeelish and came back to the hospital.
Michael's mom {Debbie} has a friend {Stormy} that has made several dresses and rompers and she made AR a hospital gown. ITS SOOO CUTE. So she modeled that and smiled a ton. Then was a little fussy but she's snoring as I type this. Hopefully, I can catch some z's pretty soon. Here are some of my pics from today:

This is actually from last night right before they took her IV out of her arm...her don't mess with my Mamma face...

Such a smiley girl :0)

Then these are from today::

Playing with PaPa and mini Carter

Too cute homemade card we got today

Modeling her new handsmocked gown with lace trim and ribbon tie back...

Practicing her pitiful face for the doctors

her blue steel

balloon attached to mug of flowers

All in all today was a good day, but I really wanted to drop kick about 5 people and didn't. Part if me wishes I would have and part of me realizes that I need to bite my tongue, watch my mouth and calm down. Thanks for the prayers. You will never know how much I appreciate the kind words and prayers. 

Good night, 

Dannis

New Day

Yesterday was probably the most stressful day of my life. Thank you so much for all the prayers.
We are going to have to wait to hear back from the cultures and the biopsy but the GI doctor (Dr. Devoid) said from the EGD scope the areas of her digestive tract (duodenum) that were supposed to be smooth were rough/injured and the areas that were supposed to be corrugated and bumpy (intestines)were slick/injured. She is getting the Total Nutrition thru her Central line (in chest- delivers fluids into blood stream). After the surgery, they moved us from a tiny closet room into a big nice suite with a crib, a hospital bed AND a couch bed. So fancy. It really is amazing how much better you feel in a bigger room. We were a nervous wreck yesterday and all camped out in this tiny room being a big ball of stress. Then it was like a weight lifted off my shoulder when we went back up to recovery and picked her up. She was a little fussy last night and had a slight temperature but she has been resting and doing good. Michael did good holding her and snuggling her and helping the nurses get her vitals and medicines going last night. I will try to keep updating as things change. They have not started any feeding yet but making sure she reacts well to the TPN before adding anything else.
Here is pic of our old room and then new room:

and here is a picture of our little angel and Daddy this morning:

More soon:)
Dannis

Trying to rest

Thanks for your prayers. Today was a roller coaster. I'm going to rest now but wanted to let you know surgery went great and she is resting and recovering in the room with us tonight. More tomorrow!!
XOXO
Dannis







- Posted using BlogPress from my iPhone

Thankful

First off let me say thank you so much for all the prayers, vibes, words and support. It is truly amazing to know how many friends, loved ones and even strangers have given so much support and we thank you from the bottom of our hearts.
She did very good all day yesterday, the GI said she could try a bottle because "the intractables" usually have a very high volume of output and she wasn't displaying that before 4pm. But, when we FINALLY got her bottle from the pharmacy at 8:45 she took the bottle great but by then from 4:30 until later in the day she had already pooped too much, lost too many ounces of weight and her albumin count went down.
This morning, the GI dr. ordered a blood culture because a lot of times the stool can get into the bloodstream and cause a bacterial infection of the blood, so we are praying that culture does not produce anything. He said he wants to go ahead and do the central line and make sure we get this under control because she is not as bad as most intractable cases but she is not getting better, she is getting worse.
She has had a temperature since we got here on Sunday so that would normally be a concern when placing a central (PIC) line but because her white blood cells are a good number we will still have it placed tonight. When they put her under to do the line they are also going to scope her GI tract and do a biopsy of some places of her intestines. They will also place an nj tube from her nose into her small intestines to give food. SO. All that should give her the nutrients she needs.
We just appreciate the love, prayers and concerns. You cannot imagine how much I love you all and thank you so much. We know our little angel is tough and she will be fine but its still so hard to see such a little body have this pain and not be able to just do something to take it away. We are thankful to be here and have such good people taking care of us.
Side note:
Please support the Ronald McDonald Houses in your area. It really is unbelievable how nice it is to get away from a drab by hospital room the size of a closet for just 10mins and have a cup of coffee and a snack.
Thanks for you prayers. Keep 'em coming!!
Love, Dannis, Michael and AdaReece
Some beautiful flowers and bear from one of my best friends.... I have never met in person. We love you sugar and Liza Kate!

no words

There are no words to describe the range of emotions i have felt for the past 48 hours...or 4 months...or past year.
When I found out I was pregnant with AdaReece, I was overjoyed and ecstatic. With a little hint of dread, fear and despair that I may not be able to keep her, because I had a miscarriage in December prior to getting pregnant with her in March. As the pregnancy continued, I heard stories of friends and acquaintances losing their babies and I would worry myself sick over my little bun in the oven. I thought that was bad. I would hear of babies being sick or having a disease and think oh no, i could never handle that. Michael would gently tell me I worry too much and I need to relax. I understand that is what I should do and it would be so easy if i actually could do that.
I know God has a plan and that everything large and small happens in His time. I truly see evidence of that everyday. and i'm thankful for that. But there is no way to describe the anxiety that started in me when I held her for the first time, the first time she cried in one of her "screamfests," the first time she pooped on me. When I took her in and they told me she had Milk Soy Protein Intolerance, I had a pit in my stomach bigger than any fear I had ever felt and mix that with overwhelming guilt and a little more anxiety and you might get a smidge of what my feelings were at that time. Everyone told me at least you know why she's fussy, at least you can cut the dairy out or give her formula but there is some sort of responsibility and guilt and sadness I feel like some of the fault/blame must be mine.
Fast forward 2 months and we have a sick little girl. She has never had "normal" poop so I really can't say when the diarrhea started but I know she got a little worse on Friday the 13th. and then a little worse on Saturday and then her appetite decreased more each day as well and Sunday it was bad enough for us to take her to the pediatric emergency room at Erlanger. They admitted us from there and we are here now. The pediatrician and the GI docs are telling me that her intestines are inflamed and not absorbing nutrients and its a downward spiral because she needs the nutrients to heal but the body is pushing them out. Pushing out her albumin and other essential proteins and nutrients. The GI doctor describe it to me to think of her intestines as injured, like a 2nd degree burn that is fat and shiny and oozes clear liquid. Her intestines are supposed to be lined with villa that absorb the nutrients and crips are supposed to secrete stuff but she has no villas and the crips are squirting all her liquids out. {very dumbed down version of the process i'm sure} So right now she is on a nutritious feed IV, sometimes called TPN but hers is called PPN because its delivered on her periphery vein{dumb version} and if she poops a lot today she will have to go into surgery and have a central line placed to get her nutrients, if she doesn't poop too bad today she will get an ng tube place down her nose to her small intestine and they will give her that way.
Anyways, we are needing lots of healing and lots of faith. Please keep us in your prayers.
Thanks, Dannis
Here are some pics since we've been here.














And a video from last night:

Quote

Motherhood is about raising and celebrating the child you have, not the child you thought you would have. It’s about understanding that he is exactly the person he is supposed to be. And that, if you’re lucky, he just might be the teacher who turns you into the person you are supposed to be.” – Joan Ryan

I copied this quote from another blog i read in all my "spare time" i have so many things that i want to do these days but tend to browse stuff on my phone instead...top things i need to do: update blog...check:) also need to upload and order photos, i take a ton on my phone and occasionally on my awesome camera...i will post some in a minute. update AR's baby book- why is this such a beast?!? clean out my piles...never ending stashes of things i cannot bare to part with or stand in my line of vision...

I try so hard not to compare AdaReece to other babies and myself to other moms but lately i have a lot of doubt in myself and my attitude on the inside, toward myself is bad. I have great days but really dark moments.

But right this second as i sit on my couch with my laptop on the boppy pillow, Cash laying beside me, Carter under the couch, AR upstairs snoring in her crib and Michael on a guys wrestling trip in St. Louis, I just want to make a post that being a mom is the hardest and most draining job I could ever imagine.{I am unbelievably tired right now but cannot sleep}
Being a mom is not physically hard, but i sweat almost every time she cries, i sweat at night in my bed and wake myself up in the middle of the 3-4 total hours of sleep i do get per night...but i'm ok with that. Its not mentally hard but parenting drains all sense from my brain. I can't make rational decisions because my brain is clouded with fear, doubt, exhaustion, stress. Its not that i don't thank God several times a day for her, she is a wonderful, bright, beautiful baby girl. But, I worry about what I'm doing wrong, what i don't know, what might happen... I guess this worry about her is only the beginning...

Monday we had our follow up with the GI doctor, Dr. Devoid. I really like him, he's very thorough and patient with all my questions. She is doing good on the Nutramagin formula she has been on for 5 weeks but still has traces of blood in her stool. He says that it can take up to 6 weeks for that to clear up so we keep testing her stool...ok. She was clinically doing better so we won't change her formula again. gotcha. He also prescribed some magic diaper rash powder to mix with desitin and  crystalize the poop juice that comes out of her. Reflux: 3 weeks ago he took her off Zantac because he said she probably didn't need it. This week he put her back on it. because she spits up 2+ hours after eating and she spits up in her sleep. Deep Breath....VSD murmur: he detected 3 weeks ago is still there and he was going to discuss with our pediatrician....trying so hard not to totally freak out. (VSD is a most of the time something small and causes no problems, usually a tiny hole in the septal wall of the heart that closes on its own). He talked to me about her for a good while and we go back in May. We go to pediatrician in April(3 weeks) so i'm going to have a list ready to talk to her about all of these things again...Honestly, I don't want to complain because AR is generally healthy and 95% of the time she is happy as a lark BUT that 5% of the time she is hurting/screaming KILLS ME!! to the core. I die!!! "how do people do it?" "what do normal people do?" these are two questions I ask myself every time something happens (like diaper rash, screamfests, etc.) I can tell it is getting easier for me to handle the stress of motherhood but i just wanted to say I never imagined it would be this overwhelming.

NOW. Let me show off this perfect angel face baby girl:

 We took those 3 month shots ON HER ACTUAL 3 Month birthday!!! and the mirror shots are from today, she was so cute laughing at herself it was cracking me up. She is the best, really. I'll post some awesome videos soon, she is grabbing stuff on her playmate and squealing and laughing and cooing. Growing up so fast...
XOXO, Dannis

Fun at the park

We met a friend today at the park and had the best time!

- Posted using BlogPress from my iPhone