Where have I been?

At the doctor mostly...but all things considered we're doing just fine.


Baby E will be 9 months old this week and it's gone much faster than it did with C.  After getting through the first 3 months of her life, things settled quickly. It's amazing how a new bottle, and no tubes and monitors really does the trick?!!


We are gearing up for some big doctor appointments here this month where they'll decide when her surgery takes place. I'm a nervous wreck thinking about it, but it's got to happen.  Little E is growing so well and she's a joy to be around. So far we haven't seen any development delays which is what I'm most afraid of with her PRS. She crawling a ton right now and even thinks she can walk on most days. 


I love this stage - 6 months to 18 months is magical. Baby snuggles, longer stretches of sleep and new discoveries around the corner. I feel blessed every day.


Hoping you all are well.

ZZZZZZZZZZZZZZZZZZ

I really wanted to continue my past post...but I'm sooo exhausted. Little E is not a great sleeper. She wakes up about 10 times between the hours of 3am-5am. I give her her paci back and she'll sleep, but then she's up again 20-30 mins later. I'm dying.  C was not like this.

Reflections

Here, sitting at work on the most mundane Tuesday ever and LOVING IT!  You know why, because today is one of the good days.  The days when you can't get out of bed you're so tired because your 4-month old isn't sleeping through the night, when your 3 year old has a meltdown at daycare drop off and wants his matchbox cars, when it's pouring rain outside and uber cold, when you have too much office work to do and a co-worker is rude. Yes, yes - these are the good days. I looked back at my few short blog posts while baby E was in the hospital and I am so sure that today is a good day.   


I thought about going back to fix the 100s of typos I made throughout those posts, but they speak to my stress, lack of sleep and utter state of survival. That's what it was, mere survival.  We have crossed over and seem to be living now...really living.  The good, the bad, the ugly but living it.


I can't even begin to describe how far we've come in 4.5 months but I will try.  Those first 2 weeks were pure hell.  Leaving the hospital without baby E was excruciating.  The unknown, the hospital, the commuting, recovery, taking care of a toddler.  Just so incredibly awful, but thankful for great doctors, my mom, my strong little E and my hubby E.  We have made it pretty far. 


Baby E had a feeding tube until the first week of December. Those weeks with the tube were terrible but it was the only thing keeping our gal from major surgery and going back to the hospital so we kept up the routine of bottle feeding, feeding tube, pumping breast milk, washing bottles and pump parts...doctor's appointments...around the clock for weeks on end. 


I had to mourn breastfeeding - now I was an exclusive pumper. It made me so sad not to be able to feed her at the breast like I did her brother. I had so badly wanted this and ahead of her birth I was really looking forward to this bonding time.  You'd think this would be the least of my worries, but when feeding is your LIFE and you have a child with physical challenges to feeding, simple things are complicated.  Learning new feeding techniques wasn't on the agenda.  Providing food for your child is the most basic of parental activities and our new way of feeding so truly foreign to us.  I felt like a new mom all over again. Unsure of myself and living in a fog.  Yes, there was mourning, but then there was acceptance, learning, success and celebration with each feed.


The feeding tube and pump was like an unwanted member of our family.  None of us wanted to deal with it, but it was a necessity. Inevitably, the tube came out in the middle of the night and I had to put it back in. Screaming baby, 4am and mommy got that sucker in there like a pro. I am still so proud of myself for this.  Her face tape had to be replaced almost daily, baby E screamed and thrashed, but it had to be done.  Her weekly weigh-ins were so nerve-wracking. When one we she only gained an ounce, the docs ordered a sleep study and a swallow study. Yikes, those were complicated and maybe I'll write about them soon. 


Baby E was a champ though; she was doing so well with her bottle and still gaining weight, the docs let us take her feeding tube out. We opened a very expensive bottle of wine that night as it was the first time since the moments she was born that we could see our gal's little face clearly.  Something so simple as seeing her face clearly and it made us so joyful.  No tube, no tape, no rash...just our little E.  She looked like a normal baby, aside from her small chin. I didn't have to explain to people "what was wrong with her" anymore. Not that anyone ever said it like that thankfully, but there were questions...I had to explain...it was hard sometimes but we persevered.  


TO BE CONTINUED....

I'm here

Soo sorry. I'm alive. We are doing well-aside from a sickness I can't seem to shake. I'm back at work and little ine just started daycare. Life is crazy right now but in a much better way than we were 4 months ago. I promise to write more later. 

Thankful

For my daughter and son- words I truly thought I might never write. And here are a few more things I never thought I'd be thankful for:

A relatively short NICU/hospital stay

Dr. Brown's specialty bottles

A hospital grade breast pump

Passing the swallow study

Mitten cuff pjs

Only using an NG tube/feeding pump infrequently now

A husband who attended the sleep study

Life Is hard these days...really really hard, but we're chugging thru!

Home

Going to be a quick one...likely full of typos again, sorry guys. 

We have been home a week. They discharged us after Baby E looked to be gaining a little weight and making progress with her new bottle. Frankly, we were gonna break her out anyway because E and I were managing her care essentially at that point not the docs/nurses. We only needed their equipment. 

So we came home with new equipment...and a nurse that comes once a week. At yesterday's weigh in, baby E had gained more than an ounce a day!!!! Which is incredible. So we aredoing  something right.

So much to manage between her health, taking care of mine...our very active bug C. Geting through this one feed at a time.

Still at the Hospital

We are doing better but still in the hospital. Baby E is learning to eat with a specialized bottle that takes time and energy to learn- fo her and for us. She needs to do most of her eating with this new bottle before we can go home. Also, she needs to gain weight. This is the one we're struggling with right now. She's expensing so much energy learning to eat. 

We are iht of the NICU which has its pros and cons of course. Being in a regular ward makes us feel more human- amazing what a window and a private room will do for your spirits. 

E and I have been alrernating nights here at hospital. Whoever stays gets about 3-4 hours of sleep that might between the feedings, a newborn baby, all the beeps that  go off constantly and oh, the annoying people who take citals every 4 hours. 

I beleive we'll be able to avoid makor surgery till she's 10-12 months ild which is great, but we have a ways to go before discharge. 

I'm functioning on so little aleep these days and processing so much important info, I cant believe my brain is actually working. 

8 days old and our gal hates her diaper changes, but she's our lone ranger- our fighter and with a lot of learning, new care techniques, love and FOOD, she will be just fine. 

E and I will be learning how to feees her at home with a nasal feeding tube. Seems so daunting right, but I memtioned that bith my kids were concieved via IVF amd our nirse said, ummm if you can inject yourself with multiple shots, eapecially IM ones, this will be a piece of cake. We can wndure this and as a fav mommy nlogher of mine notes- we can do hatd things. I'm doing it every day.