Thanksgiving Update

Another post from CaringBridge.

We had a nice, small Thanksgiving at my house last week.  Grandpa came to town on Tuesday and I was able to get out that night to my Supper Club, it was nice to have a night out!  We had Thanksgiving dinner on the back patio but it was shady and breezy so it was just a bit cool.  Aunt Ginger surprised us with a sweet video reminding us how far Ella has come and that we have so much to be thankful for this year!  http://youtu.be/Dbum-pshW3U 

Ella is doing well.  She is 13lb 10.5oz as of yesterday.  We should get a height measurement at the doctor on Wednesday.  We are still enjoying the extra time off TPN every day!  

We finally got her medicine on Friday of that week (my last post).  It took several days for her symptoms to calm but she's doing a lot better now.  

We had another eye doctor appointment last week.  This time Ella had her first comprehensive eye exam.  The great news is that Ella does not need glasses (at this point)!!  That was really exciting!

We go back to the GI doctor on Wednesday.  I will talk with her about our terrible experience and discuss options for communication as well as a proactive Rx for cycling her antibiotics so we do not run into issues like we experienced again.  There was absolutely no need for Ella's symptoms to get so bad before she got relief.

I spoke with the Nutritionist from the infusion company today.  She is very impressed with how well Ella is doing.  She's now eating 71ml/3h (I held back advancing her last week due to her bacterial overgrowth problems), as of today.  I didn't realize this but was told that Ella is now only getting 25% of her calories from the TPN (her fluids), she is getting 75% of her nutrition from her feedings!  The Nutritionist said that if this continues she may recommend taking Ella off TPN completely in a few weeks!  I was floored at that statement.  

I'm trying not to get my hopes up, but it's hard not to daydream what it would be like to be off TPN.  Even if she is off TPN, she may still need fluids (hydrating fluids, not TPN) a couple of times a week.  They wouldn't remove her central line right away...  we have to be sure she's done rather than have to go back into the operating room to replace the line because she was taken off prematurely.

I debated whether I would even share anything about that comment from the Nutritionist, but it's on the top of my mind right now so I'm sharing.

Keep up the good work Ella!!

World Prematurity Day - Dear NICU Mom

In honor of World Prematurity Day I am sharing a post from a fellow NICU mom (who actually lives locally) that moved me to tears, it was so heartfelt and relatable.

Dear new NICU mom,

It’s a place you likely didn’t expect- sitting in the NICU, watching your tiny baby fight for it’s life. It’s a place you wouldn’t choose. And if you’re like me, you had every intention and dream of holding a healthy, plump baby on your chest shortly after delivery. A dream of leaving the hospital, baby in tow. And now, here you sit, watching your fragile baby through a plastic box.

I wish there were magical words that I could write to make this situation better, but I know from experience that there are no words to do that. What I can do is share with you from one NICU mom to another, some words of encouragement.

When our son was born at just 23 weeks gestation, we were terrified. We knew babies were born premature, but never knew they could be born and survive this premature. We had no idea what we were facing.

You’re likely going to be bombarded with folks who care about you dearly. Folks who want to help you. Folks who want to fix the situation and take away your pain. Occasionally they’ll say things to you that will hit a nerve. They may be under the assumption that your baby is just in the NICU because he/she needs to grow a little more (not knowing the battle your child is in). They may demand you stop grieving and ask you to be glad that your baby is still alive. Some may go as far as to say to you horrible things such as, “At least you didn’t have to go to the end of your pregnancy and be miserable” (True story.)

But the truth is, unless they’ve been there, unless they’ve walked this, they won’t know that your heart is broken. They won’t understand that you’d do anything, go through anything if it meant you could just carry your child to term and save them this pain. And they won’t understand that in an instant, your dreams have been shattered and you’re questioning how you’ll ever pick up the pieces, glue them together and start again. You don’t need someone to remind you to be thankful-- you are. It will take some getting used to, but often times you’ll juggle being thankful for your child’s life while being scared to death for their future. That’s ok.

You see, some of us have been there. Some of us are still there. And we want to tell you one thing: all those feelings, those conflicting and sometimes awful feelings, they’re normal. Yep, totally normal. And no, you don’t need to explain them to us. We get them. We’ve had them. We’re still having them.

Plain and simple: the NICU is traumatic. All of the uncertainties, the obstacles your child faces, the pain, the statistics--- it all takes it’s toll. But you will emerge. You will find a hidden strength that you never knew you had. And you’ll see the strength of your child. You’ll grow amazed and proud of them as you watch them win their battles.

As you navigate these new waters...

...Don’t be afraid to speak up and speak out.  Find your voice and share your feelings and concerns.

...Allow yourself the opportunity to correct others who may misjudge your fears of the future as an inability to appreciate the miracle of your child.

...Grieve. Lots of things have been lost along the way- a normal pregnancy, a normal birth, a normal departure from the hospital... the list goes on and on. Grieve it all. You’re experiencing loss, a huge, unimaginable loss.

...Know that you can’t prepare yourself for the future (after all, no one can predict it) and force yourself to stay in the present. Deal with the hurdles of the day.

...But when your mind does start to ask the “what ifs” about the future (and it will), when you start to doubt the path you’re on, don’t beat yourself up for it. Face those “what ifs” with courage and know that the strength you’re discovering will emerge as you face each and every new trial.

...Remember that your child, not statistics will determine his/her course (these stubborn NICU babies rarely follow the predicted path).

...And finally, know that you’re not alone. Some of the most therapeutic times are found in the NICU when moms begin to connect. Share stories with each other. As you begin talking, you’ll likely find that these women who you thought were so different from you, have now become the only ones who understand your heart. Don’t be afraid to talk to them. Chances are, they’ll appreciate knowing that they’re not the only ones feeling this way either.

This journey that you’re on, it’s a battle. It’s likely to take some turns. You’ll make advances and retreats. Sometimes it will feel like you haven’t left the trenches in weeks. But you will emerge. You will make it. The battle will end. And one day, you’ll look back on this time and it will be a blur. A new normal will emerge, you’ll begin to find happiness and good times again and you’ll look on your scars knowing that each one represents something you have conquered.

With Love,

A former NICU mom

16 Hours!

Another CaringBridge post (the last one was too... I just forgot to label it)

16 Hours!

Practicing sitting up

We did it!!  Well, Ella did it!!  She's doing so well going up on her feeds and with her labs that her TPN infusion has been reduced from 20hrs/day to 16hrs/day! They are also decreasing the calories/protein in the fluid by 25% (but not reducing the volume).  

This change means that she'll be off her fluids/unattached to her backpack from 10am - 6pm daily!  Freedom!

This will make it easier for the Nanny and also the Au Pair when she arrives, not having to worry about her line/the backpack for most of the day.  Of course, Grandma Carol and I are pretty excited about it too!

The return to work has been pretty good.  I'm not too busy yet, but I expect that to change quickly.  While it's hard, I'm doing better than I expected NOT intervening when I hear Ella screaming (because she wants her mommy, not the new nanny who is a stranger still).  I was sitting in my office today wondering how long I should let it go on... but then the crying subsided (a bit).  

I am (again) super-frustrated with the GI doctors office.  

Monday - 10am - I called and left a message requesting a Rx for Ella due to increased gassiness/fussiness/symptoms of Bacterial Overgrowth

No response

Tuesday - 1pm - I called again and left a message

No response

Wednesday 7:30am - I called the on-call doctor.  While the doctor didn't call me back, I did get a call back telling me that a new antibiotic was called to the CVS pharmacy down the street.  I questioned the nurse whether it should have gone to the compounding pharmacy (as her previous antibiotics all did) and she didn't really know.  She said it could be transferred if that was the case.

Wednesday 9am - I called CVS pharmacy to confirm whether they could fulfill the Rx.  They can, but only in tablet form.  My 7 month old can't take tablets...  CVS advised that the compounding pharmacy can call them to initiate a transfer of the Rx.

I called the compounding pharmacy and gave them the information so they could initiate the transfer.

Wednesday 1pm - I called the compounding pharmacy again to confirm they had what they needed and could fill the Rx.  They said that they called the doctors office due to clarifications they needed before they could fulfill the Rx.

Wednesday 2:30pm - I run down the street to the doctors office, unannounced and ask to speak to the doctor, nurse or office manager.  The Practice Manager took me back to her office.  This is where I can see why they have such a broken process/communication loop in the office as she proceeds to tell me that she & the nurses are only message takers, they can't do anything more than pass the messages on to the doctors.  She said that they always let the patients know that the message has been passed on... I told her that I have NEVER been called back with a status.  ...remember, this is not the first time I've had trouble communicating with this office.

Bottom line, she told me, the doctor would see the message to contact the pharmacy once she got out of clinicals around 4:30pm.  So for Ella that means that she would go yet another day without the start of relief.

By Wednesday night, Ella is waking from a deep sleep screaming & crying due to gas pain (rather than the "simple" discomfort she had when I started this process Monday).

Thursday 8:45am - The RN from the doctors office calls (I think my visit helped - I got a call), she informed me that the doctor approved the proposed TPN changes (this was something else I mentioned when talking to the Practice Manager, since the last time changes were proposed it took a week for the approval to be communicated back to the infusion company).

I asked about Ella's Rx and the RN didn't know anything about it... she couldn't find anything in the computer about it...  I know it exists because the pharmacy has the Rx and the Practice Manager said the doctor would get the message to call the pharmacy yesterday...  Long story slightly shorter, RN assures me she is sending a High Priority message to the doctor AND to the assistant with the doctor today to have her call the pharmacy.

Thursday - 2pm - Talked to pharmacist, he still hadn't heard from doctor

Thursday 4pm - I decided to give Ella left over Flagyl from her last antibiotic Rx, even though that's not the antibiotic the doc was trying to prescribe this week... it is for the same purpose, she was just planning to 'cycle' different types of antibiotics.  I left the RN a message letting her know I made this decision because SOMETHING is better than nothing for Ella at this point.  The doctor can decide what she wants to do about that because we don't have enough of the left over antibiotic to get us through the weekend... so we're not done with this.

Thursday 5:15pm - Pharmacist calls me to let me know he left another message for doctor.  I told him what I did, he seemed to think it was a prudent move.

Friday 7:30am - I will call the doctor on-call AGAIN and tell them I need to speak with the DOCTOR about Ella's Bacterial Overgrowth - it has to be resolved before the weekend (the compounding pharmacy is open 9 - 5, M - F)

Really.

I'm at a bit of a loss.  I REALLY like the doctor but obviously have issues with the overall practice.  But it's not like Pediatric GI Specialists is a competitive industry in town where I can shop around for the best customer service...

7 Months Old!

Grandma Carol captures a self portrait!

Ella turned 7 months old yesterday!  As of today she is 12lb 14.5oz!  Just over a week ago she measured 23" long at the doctors office.  According to a conversation with the Nutritionist from the Infusion company the other day she is at the 50th percentile (on the growth chart) for her adjusted age (i.e. How old she would be if she were born on her due date 7/21/12).  The nutritionist believes that based on Ella's growth she shouldn't have any height issues (which was a concern).  The Nutritionist actually said she will soon start charting Ella's growth on her ACTUAL age chart rather than her Adjusted age!  

We are still waiting for a laugh from my girl.  Grandma and I have at various times thought we heard a 'start' of a laugh but it's just not quite there yet.  She continues to develop new skills.  She LOVES to sit on my knee and be bounced!  She has started rocking herself in this position too.  She stands (has been for quite a while) while holding her.  She has started rocking while standing too.  Now she is rocking side to side too!  She loves movement!  She loves the outdoors (and thankfully it's been pretty outside this week)!  She still doesn't like tummy time but she tolerates it for a while on the ball (an exercise ball).  She's doing better with time on her back.  She is much more interested in people than she is in her toys, but she is grabbing/reaching for some toys and bringing them to her mouth.  

We continue to try things like the swing, jumparoo and activity center without much success.  Yesterday, after a really great nap, we put her in her big swing.  She tolerated it for a few minutes and then all Hell broke loose!  She screamed bloody murder!  And the trauma continues long after you finally remove her from the swing. She looks at me as she is still whimpering, the look saying 'Why Mommy, why?  I trusted you!'.   Ella knows that she wants to be held.  I may have mentioned it before, but my theory is that for the 5 1/2 months she was in NICU whenever I put her down, I LEFT (to go to work/bed). So Ella could associate being put down (not being held) to abandonment/mommy going away?  I have no idea if there is any truth to my theory but you have to admit, it sounds good!

We caught a smile!

She is also having periods of "I want mommy and ONLY mommy".  There are certain times when she can't have mommy (and more to come when I go back to work next week).  I feel bad for Ella and Grandma when this happens, as it did tonight.  When I prepare her fluids I can't attend to Ella, I'm gloved, working with syringes, needles and keeping things sterile (and I'm very particular about keeping things sterile, as I HAVE to be).  Grandma handles it so well, and I think right now, part of it is increased gas on Ella's part.  

Grandma Carol had a birthday this week!  Since we couldn't go out and celebrate, we ordered dinner in!  Unfortunately I had stayed up FAR too late watching election coverage the night before... so I was dragging much of the day (admittedly my own fault).  You see, our corner grocery store is CLOSED for renovation (it's being rebuilt) which makes getting to the store a destination trip.  I didn't have the chance to get away to get to the store and pick up a cake.  Had my head been working correctly I would have realized that I could have walked to the corner bakery for cupcakes...  Instead, we had cupcakes the next night!  And they were delicious!  And the next night, we had a glass of wine!  So Grandma Carol's birthday celebration has been extended throughout the week!

Nanny S came over Friday to meet Ella.  Ella seemed to take to her and smiled and took her in (she has a head full of a lot of red hair, fun to focus on).  Then it was close to nap time so Ella got fussy.  S will start working on Wednesday (my first day back), with Grandma Carol showing her the ropes.  I've written up a "Care Plan" for Ella that outlines her day and nuances... it's nearly 4 pages (although a good portion of that explains her pump, backpack, maneuvering her line and what any pump alarms could mean)!  

So I start back to work on Wednesday.  This start date was intentional to give me a short week back, then the next week is Thanksgiving, another shorter week.  Part of me is looking forward to getting back to work as productivity has looked very different than I'm used to at home with Ella full time.  It will be an adjustment though.  I've worked from home full time since 2010 and it's worked out well, but it's always just been the dogs and me at home.  Now my house is full!  My biggest concern is being able to hear what is happening with Ella (when she gets fussy) and NOT to respond.  It's very instinctive for me to jump up and take her when she gets fussy.  It will be a new challenge to let go and let Nanny S or Grandma take care of it without intervening.  

I know I would have much more anxiety about going back to work if Ella were going to daycare!  I'm thankful that I work from home!  I also have no idea how I would handle it if I didn't work from home??  Ella's infusion (IV fluids) completes at around 2pm.  I will have to take the 5 - 10 minutes to unhook her line/fluids and flush the line every day, even though I am working.  If I were in the office I have no idea how I would handle this, given we don't qualify for private nursing?  

Unhooking/Hooking Ella up to her fluids daily is a 2 person job... one to hold/handle Ella and one to do the gloved/sterile work.  I've already figured out that once Grandma leaves and it's just me and N (our Au Pair) I will have to be very scheduled with hooking up Ella's fluids - before N goes off duty for the day - otherwise it wont work.  I still have not quite figured out how to handle it on N's days off...  I may just have to have Home Health come in those days because, as I said, it is a two person job (if Ella were a mellow baby who could be put down without a problem that would be another story).

Grandma Carol is staying until after Christmas, so we have a while until we get there.  We will have a 'test run' in early December when Grandma Carol flies home for a couple of days for my sister's nursing school graduation/pinning (I insisted my parents go, I have plenty of lead time to coordinate the support I need for those days)!!  We are all really excited for my sister as she has found (and worked VERY HARD for) her passion and she has done such a fabulous job in nursing school! Did I ever mention that she had her OB/Peds class at the same time as when Ella was born?  I still remember Ginger quizzing me about my pregnancy on the phone on my drive to the mountains that weekend, she told me she had more interest in the class than she originally did since I was going through it at the time (at an "Advanced Maternal Age")... little did we know that 3 days later Ella would be here!  Ginger was always several steps ahead of us as she had learned about all of this and we were trying to figure things out.

November is Prematurity Awareness Month... over the next couple of weeks I may share some posts from moms of micro preemies that have hit close to home.