tag:blogger.com,1999:blog-16540006903813332482024-03-13T07:25:11.550-04:00My Amazing EllaMicroPreemie Mom, Single Mom by Choice, Infertility survivor (CCRM Success). Ella born at 25 weeks! It's been a wild ride! BBhttp://www.blogger.com/profile/14837140513071674102noreply@blogger.comBlogger191125tag:blogger.com,1999:blog-1654000690381333248.post-30614716129989542362017-04-11T21:47:00.001-04:002017-04-11T21:47:24.948-04:00Surprise! 5th Birthday
It has been years since I have updated here. For anyone still checking in or receiving notices I wanted to again thank you for your prayers and support during our difficult first year. I have writer's block that I can't fully explain. Part of it is because it's Ella's story, not mine. I'm sure I have a few mental blocks from our experiences as well. Time is always BBhttp://www.blogger.com/profile/14837140513071674102noreply@blogger.com14tag:blogger.com,1999:blog-1654000690381333248.post-43644020028247883882014-03-04T21:50:00.000-05:002014-03-04T21:50:01.180-05:00Perplexed
We saw Ella's Developmental Pediatrician (DP) a couple of weeks ago. Based on that visit, along with my list of questions for the doctor, we have a laundry list of action items over the next several weeks. I'll skip the various debacle of clarifying orders and scheduling only to tell you to have a clear understanding of the tests the doctor wants before leaving her presence and BBhttp://www.blogger.com/profile/14837140513071674102noreply@blogger.com17tag:blogger.com,1999:blog-1654000690381333248.post-1113179949161081522014-02-11T22:56:00.000-05:002014-02-11T22:56:23.998-05:00My Tubie's Tube - A Love/Hate RelationshipIt is Feeding Tube Awareness Week.
I have missed posting on so many different Awareness Week's that we are impacted by in recent months. So many other very important Awareness Days & Weeks. Honestly, for this post, the timing just worked out, between my thoughts and a little bit of time to jot them down.
***
I HATE Ella's G-tube. I hate that she needs a feeding BBhttp://www.blogger.com/profile/14837140513071674102noreply@blogger.com6tag:blogger.com,1999:blog-1654000690381333248.post-41320622498551649382014-01-16T21:27:00.001-05:002014-01-16T21:27:46.708-05:00Happy New Year!I've been wanting to knock out a post before the craziness of tax and consignment sale preparation take hold. Actually, I still need to write Christmas thank you notes...
So a blog post it is!
Now that it is 2014 I am able to say it out-loud (or in writing):
WE STAYED OUT OF THE HOSPITAL (ADMISSIONS) IN 2013!
Can I get a Whoop! Whoop!?
We may have to lead a boring, BBhttp://www.blogger.com/profile/14837140513071674102noreply@blogger.com13tag:blogger.com,1999:blog-1654000690381333248.post-64586295649034088752013-10-30T21:18:00.000-04:002013-10-30T21:18:43.101-04:00SuperGirl!Nanny L and I held a little pre-Halloween photo shoot of SuperGirl. I am holding off on sharing the photos until tomorrow... except here.
A full view of her Super Girl costume. She is wearing boot covers, notice how huge the feet are.
Location 1: Front porch.
Note the awesome carving job on the pumpkin in the background! Go Mommy!
I'm not so sure about this costume...
BBhttp://www.blogger.com/profile/14837140513071674102noreply@blogger.com15tag:blogger.com,1999:blog-1654000690381333248.post-14267179685127386112013-10-02T22:03:00.000-04:002013-10-02T22:03:03.835-04:00Order
I have some very happy news to share! There is a new nanny in the household. Let's call her Nanny L. She is long-term (intended) nanny who is fabulous with Ella. This is her 4th week with us and we have O-R-D-E-R in my household!
At Brunch with Grandma & Grandpa. Her T-shirt says "My Mom is a Rock Star'
Nanny L is young, like all of our previous caregivers. &BBhttp://www.blogger.com/profile/14837140513071674102noreply@blogger.com16tag:blogger.com,1999:blog-1654000690381333248.post-1671734521786465302013-09-18T21:22:00.000-04:002013-09-18T21:22:04.006-04:00One Year at Home!Wow! It has been a long time since I posted. I've posted frequently in my head... those posts just never make it to publish.
Tomorrow will mark Ella's 1 year anniversary of her discharge from NICU and finally coming HOME! A year ago tonight was our her last night in NICU.
164 days.
That's 2 weeks shy of SIX MONTHS.
With the exception of those 2 weeks over Christmas last year, weBBhttp://www.blogger.com/profile/14837140513071674102noreply@blogger.com16tag:blogger.com,1999:blog-1654000690381333248.post-62116761350725007932013-07-24T22:32:00.001-04:002013-07-24T22:32:17.369-04:00Brief Snippets of our Current State
I'm having blogging withdrawals. I don't know what will come between the beginning and end of this post, but I need to post. I miss having the ability to spend time writing and editing... this will be another quick & dirty post.
First 'normal' illness
Ella and I ended up with a respiratory virus a couple of weeks ago. The only source I can nail down is Nanny J. BBhttp://www.blogger.com/profile/14837140513071674102noreply@blogger.com9tag:blogger.com,1999:blog-1654000690381333248.post-84612821796781962902013-06-28T22:46:00.001-04:002013-06-28T22:46:05.123-04:00Childcare - Ugh!Childcare (Ugh!)
I could have also titled this post "Thank God this week is OVER!".
As I considered becoming a SMC I thought a lot about childcare and my support system. I had originally planned on daycare but knew there would still be tough moments since my family does not live nearby. While struggling with infertility, when I allowed myself to think about having my baby I BBhttp://www.blogger.com/profile/14837140513071674102noreply@blogger.com22tag:blogger.com,1999:blog-1654000690381333248.post-8859052101127077362013-06-18T21:49:00.001-04:002013-06-18T21:49:31.150-04:00Summer Bucket List (aka Ella & Mommy's Summer of Fun)
About a month ago I saw the 'summer bucket list' blog posts crop up in various blogs I follow. At first I dismissed it, thinking that it didn't apply to Ella and me given her age and her developmental delays. BUT... the more I thought about it, the more I realized that it is PERFECT for us!! I signed right up and started making a list.
We have our own 'rules'..BBhttp://www.blogger.com/profile/14837140513071674102noreply@blogger.com10tag:blogger.com,1999:blog-1654000690381333248.post-49184811448356004652013-06-06T21:20:00.001-04:002013-06-06T22:00:01.285-04:00Goals (and Omegaven on Rock Center Friday)A couple of weeks before Ella was discharged from NICU the Early Childhood Intervention (ECI) Coordinator met me at Ella's bedside to assess her and to discuss/write goals. Ironically when she first assessed Ella back in September she said she didn't qualify for Physical or Occupational Therapy because she had not missed her developmental milestones (yet).
Given that Ella was at BBhttp://www.blogger.com/profile/14837140513071674102noreply@blogger.com16tag:blogger.com,1999:blog-1654000690381333248.post-62823842383639918582013-05-30T21:39:00.000-04:002013-05-30T21:39:15.207-04:00Sleep DeamonsNight & Day.
Ella can distinguish night & day.
Ella sleeps at night.
She goes to bed around 7pm. She generally sleeps until 7am, waking once during the night* and on most (lucky) nights, settling back down fairly easily.
*I'm in & out of Ella's room a couple times at night to set up and remove her overnight feed. Because of her overnight feed (and her short gut) she BBhttp://www.blogger.com/profile/14837140513071674102noreply@blogger.com11tag:blogger.com,1999:blog-1654000690381333248.post-59433554912225611312013-05-29T22:44:00.000-04:002013-05-29T22:44:57.472-04:00Memorial Day Road TripWe did it! We had our first road trip! Years in the making and at 13 1/2 months old (actual).
I had mixed feelings about travel for a long time.
So much to pack for a micropreemie with medical needs... (I added another dozen items that are not on the list below.
<!--StartFragment-->
Outings/Day Trips
Item to Bring
Notes
DIAPERING
BBhttp://www.blogger.com/profile/14837140513071674102noreply@blogger.com4tag:blogger.com,1999:blog-1654000690381333248.post-65280096026778044212013-05-17T13:07:00.000-04:002013-05-17T13:07:17.647-04:00Developmental Pediatrician IntakeIt's not unusual for a micro preemie to follow-up with a Developmental Pediatrician, actually I'm surprised it's taken so long for us to get connected/referred to one.
I received the intake forms last week and couldn't believe the THREE packets of forms that have to be filled out.
Packet 1:
13 pages of forms and 2 letters to the parent(s)
Packet 2:
2 pages of forms
Packet 3:
15 pages of BBhttp://www.blogger.com/profile/14837140513071674102noreply@blogger.com9tag:blogger.com,1999:blog-1654000690381333248.post-6699863164692140072013-05-16T22:39:00.000-04:002013-05-16T22:39:29.316-04:00GI 2nd Opinion and MoreWednesday I took Ella for a second opinion at the other Pediatric Gastroentronolgy clinic in town. I had asked around about the doctors at the "other" clinic to learn about them and find out who might not treat Ella as a "textbook" SBS case.
Dr. C came into the exam room, we discussed her history at length and then he started discussing her feeding issues/oral aversion. While she BBhttp://www.blogger.com/profile/14837140513071674102noreply@blogger.com3tag:blogger.com,1999:blog-1654000690381333248.post-89535337770581306492013-05-09T22:34:00.000-04:002013-05-09T22:34:46.377-04:00I couldn't do it.I have a half written post about Ella's NEC terror on this day last year. I started it several days ago and wrote the background but I can't bring myself to write the detail of those days.
And that's okay.
As much as I would like to document the details (and know I will one day), I can't push it.
I took today (and the next two days for other reasons) off work because I knew it would be BBhttp://www.blogger.com/profile/14837140513071674102noreply@blogger.com3tag:blogger.com,1999:blog-1654000690381333248.post-86933510826572974122013-05-02T21:39:00.001-04:002013-05-02T21:39:31.063-04:00Another BIG DEAL!Ella had her first (Stage 1) veggies yesterday!
Yum! She looks Sweet Potato drunk, doesn't she?
This is a BIG DEAL!
For those that don't remember her background... I'm working on (okay, thinking about) a post for our upcoming terriversary, her NEC battle. That story next week, I hope I can do it justice.
Ella had a portion of her small intestine removed with the NEC battle thatBBhttp://www.blogger.com/profile/14837140513071674102noreply@blogger.com15tag:blogger.com,1999:blog-1654000690381333248.post-35381302407198019002013-04-09T22:51:00.000-04:002013-04-09T22:51:00.042-04:00Your First Birthday
My sweet Ella.
You are ONE year old today!
I have so many mixed feelings about this milestone of yours, but the overwhelming feelings are love, pride and gratitude. Because you had to come earlier than anyone expected, it was actually a very scary time when you were born, and for the months thereafter. BUT, this day is not about mommy or that fear, it is about celebrating YOUBBhttp://www.blogger.com/profile/14837140513071674102noreply@blogger.com16tag:blogger.com,1999:blog-1654000690381333248.post-67034536606804226502013-04-07T22:21:00.001-04:002013-04-07T22:21:56.459-04:00A Year Ago...I'm using this phrase a lot lately.
A year ago tonight I was up all night, trying to sleep in the recliner in my parents basement in the mountains, so miserable. Crying.
The next morning was Easter and I decided I should go to the hospital because I couldn't take the pain/misery any more. I thought I wasn't tough enough... It was just pregnancy, right? It didn't take too long for me to BBhttp://www.blogger.com/profile/14837140513071674102noreply@blogger.com5tag:blogger.com,1999:blog-1654000690381333248.post-19796382158218149992013-03-31T10:32:00.000-04:002013-03-31T10:32:55.994-04:00Easter... a year laterI started to write a detailed post on Easter earlier in the week. Due to time and a bit of an intentional mind-block, that's a post that not going to be finished... not for a while. Maybe next year. Here is a quick Easter post with some wonderful photos.
Easter.
The day everything changed.
The most traumatic day of my life (up until then)... leading to months of anxiety BBhttp://www.blogger.com/profile/14837140513071674102noreply@blogger.com17tag:blogger.com,1999:blog-1654000690381333248.post-16487876041597587442013-03-19T21:12:00.002-04:002013-03-19T21:12:43.252-04:00Therapy GuiltI have 50 other things I need to be doing but I really feel like writing a blog post... to you mom's who can take care of your kid(s), work full time and manage to blog regularly, my hat's off to you!!
Just to put it out there, I'm a good mom! I'm a really good mom! It may sound cocky or something like that, but when people say "BB, you are a good mom"... I thank them for BBhttp://www.blogger.com/profile/14837140513071674102noreply@blogger.com9tag:blogger.com,1999:blog-1654000690381333248.post-53602497915144890822013-03-07T22:21:00.001-05:002013-03-07T22:21:58.515-05:00RebrandingI hate that I have been MIA - from both here and CaringBridge, but especially here, my blog. I think about blogging frequently but when the end of the day comes I never get around to it. I want to get back to blogging because it has been such a good outlet for me for may years, and it satisfies my "inner writer".
I expect it will be a slow come-back... between the usual busy BBhttp://www.blogger.com/profile/14837140513071674102noreply@blogger.com21tag:blogger.com,1999:blog-1654000690381333248.post-50629452004755573782013-01-02T20:37:00.002-05:002013-01-02T20:37:28.358-05:00Home Again!!From CaringBridge.
We are HOME! Ella has no line!!
As planned, we made it home Monday afternoon, New Years Eve! Her last dose of antibiotics was at noon (started 30 minutes early for the nurse), then they had to weigh her and remove her PICC line. They had us wait another 45 minutes to check the PICC site to make sure it was clotting up before letting us go.
What aBBhttp://www.blogger.com/profile/14837140513071674102noreply@blogger.com15tag:blogger.com,1999:blog-1654000690381333248.post-85557659243118389682012-12-28T15:27:00.002-05:002012-12-28T15:27:52.394-05:00Count Down to New Years EveAnother CaringBridge Post...
It has been a very frustrating stay at the hospital. How quickly I had forgotten that the plan changes with each doctor you talk to and the execution differs with each nurse assigned. Add in the fact that it's the holidays and things are running on short staff...
Where did I leave off in my last update?
Ah, they removed her central line lastBBhttp://www.blogger.com/profile/14837140513071674102noreply@blogger.com14tag:blogger.com,1999:blog-1654000690381333248.post-63735230042363819562012-12-21T10:54:00.002-05:002012-12-21T10:54:19.277-05:00Central Line is GoneFrom CaringBridge...
I have to say that I was thankful to be in the hospital around midnight Wednesday morning. I had noticed a wet spot on Ella's clothes on her chest and a short while later the wet spot was bigger. It was just under where her dressing for her central line was. I called the nurse and it turns out that there was leakage from that area, although we couldn't BBhttp://www.blogger.com/profile/14837140513071674102noreply@blogger.com9