Count Down to New Years Eve

Another 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 last Thursday and although it was a surgical procedure it was very minor and simple.  She's been off TPN since last Friday.

Monday, on Christmas Eve, she had a PICC line placed.  They wheeled Ella and me down to Radiology on a gurney that morning (Ella really enjoyed the ride) for what I understood to be another quick, minor procedure of putting a PICC line in her arm.  This would allow for better infusion of the IV antibiotics and if needed, TPN.  It also allows for blood draws without sticking her.  

I waited in the surgical waiting room.  After about 90 minutes I was wondering what was taking so long?  The receptionist called down for me and informed me that they had trouble finding a vein so they put it in her leg.  That's all I was told.  I was very disappointed to hear this as it was not discussed as an option with me.  Meanwhile, the receptionist asks me to answer the phone as she had to run out "for a minute". Really???   I think she was gone an hour!  

Finally I go to recovery to find a cold, unhappy Ella.  The PICC line was not really "in her leg", it's in her groin.  I was seriously upset.  Think about it... a line that must stay sterile/clean in a baby's groin... a baby who has a condition that makes for frequent, loose poops.  What were they thinking?  We are in the hospital due to a line infection and a new line is placed in the dirtiest place on a baby?

Apparently they had no other option, she had bloody marks on both arms for where they tried to put the line in there.  Apparently she's too chubby... ironic since her GI doctor is obsessed with her ability to gain weight.  

So she is getting her antibiotics through the PICC in her groin to treat her central line infection and we are praying that the treatment doesn't lead to another infection.  

Seriously, if I didn't know better I'd think I was making this stuff up... 

Needless to say Christmas Eve and Christmas day were hard.  The PICC dressing had to be changed twice on Christmas day.  It's been changed daily since then. Dressing changes are not fun or easy on Ella (or mommy). And every nurse does it differently... I have to remind them that they have to account for her chubby folds in her diaper area (the dressing will pull up as she moves around).  We are changing diapers every hour or so, trying to keep the area clean; basically changing her every time we think she's peed/poo'd.  

We were going to have a small Christmas in the hospital room but I was still very upset about the PICC line.  When it came time I was just too weepy and my family promptly sent me home to sleep for a few hours.  I felt very much like the Grinch who stole Christmas...  We have decided to reschedule Christmas for once Ella is home.

Ella is scheduled to finish her antibiotics on the 31st.  The Infectious Disease doctor is checking to see what time her last dose is that day, it will be either 6am, noon or 6pm.  We will have the PICC line removed once the last of the antibiotics are done and go home!  ...if the PICC line had been in her arm as planned we would have been able to go home and complete the 10 days of antibiotics at home.

There's more...

She is getting her 8 bottles a day, rather than 7.  We are now using her g-tube.  She is taking about 75% of her feeds by mouth but is uninterested in some bottles/finishing some bottles.  In order to keep her off TPN we are tubing the volume she is not drinking.  I have a fear that using the tube will create an oral aversion, but the nutritionist said today she may be uninterested as an effect from the antibiotics or even just being at the hospital as opposed to home.  I sure hope so!  Too often I feel like we are trading one problem for another...

I get to sleep in 2 hour increments, in-between feeding, tubing, changing and getting Ella back to sleep (plus the antibiotics/pump alarm going off nightly over the 12am hour).  At home, mom & I would split up the night.  That's not so easy in the hospital.  I will say that I go to bed around 8 or 9pm and we sleep until 6-8am.  

Ella's weight gain has slowed while in the hospital, but she's not losing as a pattern.  The doctors are watching her weight daily very closely.  This is difficult since she has been NPO (not allowed to eat) twice in preparation for her surgeries.  It usually takes 2 days after being NPO for a loss to appear on the scale, then she will gain again.  As of today, the GI doctor wants to put her back on TPN at night for the remainder of her hospital stay to maximize her calories.  I don't agree but I don't have a strong enough argument to fight her.  We are increasing her calories in her formula today as well.  

My Dad was here over Christmas.  He came to see Ella several times and was very helpful around the house and taking Natalie to do some things she needed to get done.  Mom did not head home with him as originally planned after Christmas.  Hopefully we can send her home in a couple of weeks.  Natalie and Ella are becoming good buddies.  It's been an unusual situation since we were admitted just a few days after she arrived.  She's been rolling with it very well.  I still can't wait to get home and get us all settled in to our new normal together.

Natalie has a dinner with her Au Pair group on Saturday night and I have made plans to have dinner in that part of town with a couple of good friends.  It's been a long time since I've been so excited about a dinner out!  Grandma is going to do a night shift at the hospital with Ella that night... she's been offering but I've not taken her up on it until I came up with this plan (since dinner is about 25 minutes outside of town, it saves on multiple trips to that part of town, or sending Grandma off to an area of Charlotte she doesn't know).  

For now, we are planning to Celebrate Christmas on New Years Day!  At home.  With NO lines. No dressing. No TPN.  And Ella should be able to have her first REAL bath (not a sponge bath) that week!

Central Line is Gone

From 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 see the source of the leak.  Her TPN was halted and they did a quick dressing change.

They took her to the procedure room to place an IV in her hand and restarted her TPN and antibiotic.  

The bad news is that the TPN is really hard on veins - so through an IV, the IV doesn't last long.  

The other bad news is that the antibiotic is really hard on veins - so through an IV, the IV doesn't last long.  

Now put the TPN & antibiotic through the same IV... see where I'm going with this?  Her first IV lasted 25 hours.  The second lasted 29 hours.  They have not placed the third just yet.

Back to the central line.  It was easily decided on Wednesday that the line needed to come out.  The doctor suggested that if there was a crack/leak in the line below the skin that would explain her infection.  Because of Ella's age she had to be taken in to the operating room to remove the line (the surgeon says he can talk older kids through being still enough for the procedure), so she had minor surgery on Thursday.  It went very well.

After surgery the surgeon told me that it appeared she had outgrown her line.  I said that made sense given it was placed when she was still less than 2lbs, she's now about 15lbs.

The doctors have worked hard on putting a plan in place so we don't have to replace the line.  The original plan was to place a PICC line in her arm (which should last 2 months or so) after her infection clears up and send her home using that for antibiotics & TPN.  

A more creative plan was proposed which will require we stay at the hospital longer, for the full 10 day course of antibiotics.  She will need multiple IV's placed to support the antibiotics and TPN while she is here (not to mention daily blood draws too).  But we will also increase the calories in her formula so we can get her off the TPN next week, for good.    She's currently at 89ml/3hr.  The nutritionist at the hospital says that when we go to 92ml on Monday with the extra calories we should be able to stop the TPN.

We have opted for the longer hospital stay with the goal of getting her off TPN, even though it will be hard on Ella (and me, and my support).  

That's where things stand.  

The Peds unit is VERY different than NICU.  There is NO baby care by the nurses in Peds, they do only medical care.  This is why I am thankful that we have Grandma and Natalie to help during the day, giving mama a little break.  

We fix our own bottles here whereas in NICU they made up bottles for the baby.  But it also takes FOREVER to get her "as needed" medicine, like her drops for gas pain.  I will ask for it because she is having pain and it could take 90 minutes to 2 hours before they actually bring it.  At home, when she needs her medicine I give it to her.  Right or wrong, I just had mom bring her gas medicine from home so I can control when she gets it.  

They don't seem to do baby-care on a schedule like they do in NICU (every 3 hours)... so I don't know when they are coming to do vitals or other care and it doesn't seem to matter if I finally got her to sleep a few minutes before.

BUT... we do have walls, a door, a bed for me, drawers for clothes and a TV.  These are all things I would have given anything for during NICU days.  

I've actually run into a couple of staff from NICU since being here, they are so sweet!

Plan C: The doctor just came in and said they will stop the TPN today.  She doesn't need it enough for how tough it is on her veins.  She also said that our GI doctor said not to increase calories in her formula (after Grandma and I just trudged through the calculations on how to mix the revised formula, but that's okay).  But this doesn't change our plan to get off the TPN permanently.

I'm struggling with the doctors/nutritionists about their "calories per kilo daily calculation requirement" (it's a complicated formula based on Ella's weight, how much she has to take in each day).  My biggest struggle is that Ella doesn't want 8 bottles a day and the doctors order that she takes 8 bottles a day (she is 8 months old; 5 months adjusted today).  

Since she has been sick she has been eating less and we have NOT supplemented through her g-tube and she is still gaining significant weight (she put on 10oz in 9 days last week taking 7 bottles daily). 

I'm in "trouble" for allowing her only 7 bottles daily but what I am doing is listening to what Ella wants.  She doesn't have an oral aversion (which is the first thing these people think when I say she doesn't want her bottle)... at midnight she is telling me "mommy, I'm not hungry, why are you trying to force me to eat?"   I'm challenging the docs/nutritionist to look at her WEEKLY WEIGHT GAIN in addition to their daily kilo calorie requirement.  If she were losing weight or gaining really slowly that would be one thing.  But she is bigger than many term babies.  

This is one of the frustrating parts of having a "medically fragile" child... the balance between listening to the experts who are following the standard, and listening to my daughter (and my own instincts as her mother).  They absolutely know what they are talking about, but I'm with Ella day & night and I know her.  I think I'm making a little headway trying to get them to compromise... but I have a feeling it just depends on which of the many experts I talk to at any given time.

Anyway, that's our story.  So now I'm hoping we will be released before New Years.  And I can toss out all of the TPN supplies that are taking up a corner of my kitchen.  We may just have to burn her backpack & IV pole!

Admitted

Written on Tuesday, December 18 on CaringBridge... unable to cross-post via phone.  Finally have my computer for a few minutes.  Unfortunately I can't add the photo right now.

Tomorrow marks 3 months since Ella came home. It's been a good run without being readmitted... 

Ella still has not kicked her crud she's been fighting since December 1. We had a few days last week she seemed to be without a fever... But when she didn't feel like she had a fever, I didn't take her temp...

Fever increased again on Friday and through the weekend. I took her back to the pediatrician yesterday and then for her usual bloodwork (plus an added blood culture). 

The culture came back positive today and we were told to pack a bag and head to the hospital. 

So here we are. I've been teary eyed the last couple of days, feeling so helpless to get Ella feeling better. At least we have a diagnosis and are starting treatment. Docs are still waiting to see exactly what type of infection she is fighting and will fine tune her treatment based on that information. 

Doc set the expectation that we would need 3 negative cultures before we are discharged... So IF that starts tomorrow the earliest we will be home is Sunday. There is a fairly good chance we could still be here for Christmas.... I guess it's a good thing that my sister decided this morning that she and her family won't come for Christmas... It's a 12 hr trip and they are starting to see a cold crop up in their house... Sadly, we just can't have Ella exposed. This will be the first Christmas my family isn't all together... Thank goodness for Skype!

Our Au Pair, Natalie, arrived Thursday evening! She is really sweet and is really good with Ella... Even though she has only met Ella's fussy side so far. I can tell already that Natalie & Ella are going to be best buddies. 

We did get an unexpected bonus today... Santa was at the hospital when we got here! Ella wasn't going to get to meet Santa this year due to contact restriction... But she met him today! Disregard her mess of a mom in the picture... I had been crying earlier when I learned we had to be admitted.

Another CaringBridge post... I swear I have one I want to write specifically for this blog, when I can find the time and energy.

Ella and Grandma this afternoon after a bath.  Ella is wearing a dress that my mom made for my sister (and I later wore) 44 years ago.

It was bound to happen, I just didn't think it would happen this soon... especially under the umbrella of isolation we live in.  Ella spiked a fever.  It was Saturday, December 1.  She was fine that morning.  We all went for a drive so I could run some errands, Grandma & Ella stay in the car.  On our way home Ella started screaming bloody murder.  When we got home I took her out of her car seat and she was burning up.  Long story short, our pediatrician (love her) sent us to the Pediatric ER.  We spent 5 1/2 hours there and had a horrible blood draw experience, but we confirmed that Ella did not have a line infection.

We spent the week giving Ella Tylenol & Advil to combat her fever that went up and down.  By Friday her temp was in the 99 range (highest during her illness was 103.7).  But it is still up and down, not nearly as bad as the beginning.  She's also not been as interested in her bottles while being sick.  When we weighed her on Friday she had lost 4 oz!  I'm happy to report that since then she has put 2.5oz back on, so going back in the right direction.  Because of this we have kept Ella at her 77ml/3hrs and not advanced her in a week, we will advance her again when she is consistently taking her full bottles.

Saturday night, I noticed my throat had that dry feeling... I woke up Sunday with a sore throat and through the day ended up with a fever.  Grandma Carol worked the entire night shift with Ella so I could sleep (I went to bed at 6pm), thankfully Ella had a pretty good night.  LOVE my mom! I was planning on taking over at midnight but she texted me that Ella was sleeping well and I should just stay in bed.  I'm feeling 'better' today, it's turned into a head cold but the fever is basically gone.  I just hope Grandma doesn't come down with it next...

Last week, Grandma & Grandpa were able to fly home to Florida for 2 nights to go to my sister's nursing school graduation ceremony (Way to go Ginger!).  Grandma had a really hard time leaving, especially since Ella was sick and not eating well.  I assured her that I had help lined up, we would be fine and she needed to go.  We survived, but the second night was rough... not much sleep.  I was glad she was able to go and glad to see her back.

Our Au Pair arrived in the US today!  She traveled 30+ hours since Sunday and landed in NJ this afternoon for orientation.  She comes to Charlotte Thursday evening, we are looking forward to bringing her home, having her get settled and watching her and Ella get to know each other.  If I were her I would be exhausted... but then I remember how things were in my early 20's and know she will be just fine.

First time in her exersaucer without a meltdown

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.

Trick-or-Treat!

Ella dressed up in her Bumble Bee outfit for our trip to see her GI doctor this morning.  It was short-lived as the nurse needed her weight & measurement (naked baby) and we didn't bother putting her costume back on over her PJ's.  

After her afternoon nap we tried it again for a photo opportunity.  She doesn't really care about dressing up.  She is NOT a camera ham as of yet.  Usually when a camera is pulled out, she looks the other way or starts squirming/fussing.

Last Halloween I was in Colorado on bed rest as I had my embryo transfer (resulting in Ella) that day. That makes Halloween a special day for me!  Tonight she is asleep in her crib!

The GI doctor was thrilled with her lab results!  For those who know what it means, her Direct Bili is now 0.2 (normal), Total Bili 0.4!  At it's highest her Direct Bili was 11+. Her Bili is the reason we were on the Omegaven, and waiting for the FDA approval to use it at home... that never came.  Instead, since she was eating enough orally we were able to take her off Lipids (what the Omegaven replaces) completely.  

After 3 weeks at 50ml/3hr we increased to 53ml today.  Starting next week we are to increase by 3ml every Monday & Thursday.  This should take us places!  The doctor said that she would consider another TPN reduction in 2 weeks.  

I had a good interview with a potential part time nanny today and have another scheduled for tomorrow.  I'm feeling better, pending references & background checks, that I'll have the proper help in place to return to work in 2 weeks!  And even though this/these caregivers will be short-term, they will also be able to fill in as-needed after our Au Pair gets here too.  

We are almost through 350 pieces of candy tonight, giving 2 out to each child.  Grandma & I did have a few pieces/set some aside.  

Progress

Another CaringBridge post.

We have made a lot of progress since my last post!  

Ella

Ella's TPN was finally reduced by 25% last Wednesday!  We did not get a reduction in hours, she is still getting her fluids for 20 hours but at a lesser volume.  Our fluid bag is a lot smaller too! This means her backpack is lighter!  Not that her backpack is heavy... but when you are carrying a 12lb baby (yes, she is now 12lb 2.5oz) and have to carry a backpack with fluid and a pump, you can tell the difference when they cut back by 150ml.

We are enjoying 1 doctor appointment a week (this week we see the GI doctor on Halloween) and our PT/OT at home each week.  Nurse J comes every Sunday afternoon to change Ella's central line dressing.  Unfortunately after PT tomorrow morning we have to go to the hospital for labs.

Child Care

I am so excited that I found an excellent Au Pair!  When I first went down the path of considering an Au Pair I had a 'wish list' in my head of everything I wanted in someone who would come live in my home and take care of Ella.  I was sure I would have to compromise and settle for 'good enough'.  We are classified as 'Special Needs' with the agency which means only prospective Au Pairs who indicate they are comfortable working with Special Needs children can be available for us to interview/hire.  This is a tiny pool of candidates.  Over about 3 weeks of looking I saw less than 5 profiles!

I had poor interview with a candidate from Brazil on Wednesday afternoon, due to technology issues (international interviews via Skype are tricky).  The next day the profile for N shows up as a candidate and I couldn't believe what I saw!

N (I will wait to share her name once she gets here and gives me permission) is from South Africa.  Her native language is English (this is a huge plus, very hard to come by)!  She is in her early 20's and graduating from college next month.  She has years of childcare experience/training, including infants and special needs.  She is mature and responsible.  She still lives at home with her family and wants to have an adventure, gain independence, before going home and working on her Masters degree. I found someone who meets my 'wish list'.  She said that she immediately connected with us and knew we were the right match for her (she was interviewing with another family as well). As long as all of the paperwork (Visa) is processed timely she will be here mid December.  We are so excited to have her come spend a year with us!

This week I have in-person interviews for Part Time Nanny support to help us out until N arrives and settles in.

Nursing

Hanging Ella's fluids every night is still going really well.  I can still get it done in less than 30 minutes now that I have figured out the technique that works consistently to prime the line.  

I just realized that the next set of bottles need to be filled before our 9pm feeding.  Must go!

One Month at Home

Friday marked ONE month at HOME for Ella!  

We continue to stay busy, every day.  I thought it might quiet down with fewer doctors appointments but not really.  I've actually spent much of the week on the phone with the doctors office (or trying to get them on the phone).  Let's just say that some doctors are juggling a lot of patients.  I leave messages that go unreturned.  I have to call the receptionist and insist she doesn't transfer me into voicemail (AGAIN).  I've also learned that I get results MUCH faster when I call the doctor-on-call on a Saturday than when I try to get a hold of the nurse during the week.

ELLA

Ella is doing great!  She's actually growing a little too fast at this point.  Her TPN is supposed to be reduced by 25%!!!   Of course there was a mix up in communication between the doctors office and infusion company so this change hasn't happened yet (because I wasn't involved trying to get it facilitated).  I had to talk to the on-call doctor today for another reason and it happened to be OUR doctor so I mentioned that Ella's TPN hadn't been adjusted yet - so she should have that handled (administratively) Monday.

For nearly a week her fussiness improved because her gassiness improved.  We started her on daily Immodium which helped a lot (for a while).  We were able to put her down during the day more frequently!  Grandma even said we had a 'different baby'.  When I mentioned not being able to put her down in my last post I had a lot of feedback about gadgets that might help.  We have the vibrating bouncy seat, the swing, the Ergo carrier, etc... we use all of that! With the exception of the carrier I consider being able to put her down in the bouncy seat, swing or anything where we are not holding/attached to Ella as successfully putting her down.

She did start getting gassy again mid-week.  Ella will have chronic problems with gassiness caused by a condition called Bacterial Overgrowth (BO).  This is due to Ella missing the valve between her colon and small intestine.  Bad bacteria in the colon are not supposed to make their way back into the small intestine but due to the missing valve (from her surgeries) the bacteria move into her small intestine and multiply causing gassiness, more frequent/looser/mucousy stools. 

I first called the doctors office when the symptoms started on Monday.  I talked to them Wednesday (after multiple calls) but it was focused on another necessary issue, getting Ella's bloodwork, we didn't get any feedback on her BO. By Thursday afternoon Ella was really fussy due to the BO.   Friday morning I called the doctor again.  It took 3 calls to finally get a call back(before the weekend and before the compounding pharmacy closed at 5pm for the weekend - the compounding pharmacy has to mix her antibiotic).  

ADMITTED

Wednesday we were admitted back to the hospital for the afternoon.  We needed bloodwork.  Her broviac (the line that is used to administer her TPN) also allows for blood to be drawn from it, it no longer was allowing blood draws.  It actually took about a week for me to get instruction from the doctors as to what to do to get blood drawn.  Wednesday morning it took over an hour of (MULTIPLE) phone calls with the doctors office & labs to TRY to track down our orders before I would take Ella to the hospital for bloodwork (we are on contact restriction, I didn't want to take her only to find out that the lab didn't have orders).  

Of course when we got to the hospital they didn't have our orders (after I was reassured by the doctors office that they just talked to them and they had the orders).  Thankfully by then I had a copy of the orders emailed to me so I was able to resolve that quickly.  

The Children's hospital area of the hospital attempted the draw through the line unsuccessfully.  We had to be admitted in order for the line team to work on her line.  It wasn't bad because they put us in a private room in the PICU and Ella slept for most of the day.  They tried several attempts using an anti-clotting medicine in her line but they were not successful.  This is not uncommon.  Apparently there can be a small flap that develops on the end of the line where pushing fluids through (such as her TPN) works fine but drawing blood out the 'flap' blocks the line.  

Since she can still get her TPN through the line I absolutely will not consider going back into the operating room to replace the line (and the surgeon agrees).  Unfortunately that means that for her bloodwork every 2 weeks we will have to go back to the Children's Hospital and she has to get STUCK.  This hurts mommy & Ella.

We got to the hospital before 11am Wednesday and got home just before 7pm... just trying to get a blood draw.  It was a long day.  BUT... it was ONLY for the day!!  

NURSING

I'm way behind updating you on our nursing adventures.  The home health company did confirm that I have coverage for over 100 nursing visits so I FINALLY had a nurse coming out nightly without the daily battle (and many more unreturned phone calls) to make that happen.  

Because of many frustrations with my nursing experience with our home health company, my pediatrician referred (at my request) me to another home health company.  I visited them on Monday to get a preview of their pump/priming process and ask some questions.  I liked them a lot but did not like their pump for various reasons (much less user friendly).  I was disappointed because I was hoping that making a change might solve my problems.  

I left that appointment thinking - why wasn't anyone from our infusion/home health company concerned about why I was having such a hard time learning to administer Ella's TPN.  Shouldn't they want to try and figure out the problem and resolve it?  Could it have anything to do with how I was trained?   On the way home I called our infusion company asking them to send out one of THEIR nurses (they subcontract nursing so my nurse works for a different agency) to REteach me how to administer Ella's TPN.  The fact that I had such problems priming the line - I had to be missing something, a simple trick...  

I also spent some time over the next day or so researching pumps, youtube videos of priming the line and asked my SBS Facebook group for tips & tricks.  Between my research, the new nurse and my sister (visiting) on Thursday we finally figured out the 'trick' to priming the line without aggravation or anxiety. The infusion company nurse did see first hand the problem I continued to have and I think, had I not received a lot of feedback from my research, would not have been able to help me resolve the issue.  

But we figured out that it is the angle you hold the filter during priming and the need to immediately clamp the line as soon as the line is filled (as not to allow the fluid to empty and air to backfill the line).   I'm amazed that this isn't taught first hand.  But I am happy to report that we have tested this theory Friday and Saturday nights with success (and without a nurse here to do it for me).  Tonight, from start to finish it was 25 minutes!!  That's all.  With no anxiety!  

So finally I am able to administer her TPN myself without problem and I can call off the daily nurse visits (that I had to fight to get).

OTHER

My sister flew in Thursday and my dad also came for the weekend.  We tackled a somewhat big project.  We swapped out my Living Room and Family Room.  

The Family Room was a very small space but were we seemed to spend most of our time.  The Living Room is a much larger space that was rarely used and has recently ended up a storage space for lots of baby gear.  I arranged for an A/V company to move the TV (mounted to the wall).  We moved the rugs & furniture and took the opportunity to CLEAN, especially all of those spots that are impossible to get to normally.  It was a much bigger project than I anticipated.  All of the big stuff is done now but the little stuff is still not back in place.  

My sister has helped a lot with the nursing aspects of Ella's care this weekend; she's graduating from Nursing School in December!  She has helped with the resolution of the TPN administration and also helped me change out Ella's Mickey (g-tube) button for the first time (again, thanks to youtube education).  

I still have a lot left to do and less than 4 weeks left of my leave.  I know I won't get to all of the "nice to have" projects but I still have a few "must have" projects that must be done. This week's priority is (MUST BE) preparing/scheduling interviews for part time nanny help for when I start work again.

Fly By Post

From CaringBridge

It's been too long but there is really no time to get online, let alone write up a post.  We are still working on Ella's need to be held during the day (all day).  We are able to get her down on her own for an hour or two every day, but other than that either Grandma or I are holding her, playing with her, trying to calm her.  This is NOT a bad problem to have... given EVERYTHING we have been through in the last six months.  Like I said in my last post, it just makes it hard to do anything other than the essentials.

ELLA

Ella is doing really well. As of Thursday she is 10lb 9 oz!! We moved to SIZE 2 diapers! She's a JOY!  She isn't perfect though... with the holding all of the time, late day/night fussiness she keeps us on our toes.  We admit that she is completely calling the shots in the house!  She is still (THANKFULLY) sleeping well at night.  It's just never fun to have to wake a finally sleeping, previously fussy baby every 3 hours around the clock.  Thankfully at night she tends to go right back to sleep!!  Let's keep it that way!!  If she's going to fuss, keep it during daylight hours!

Starting next week it looks like we are going into a phase of ONE doctor appointment a week!  We had 3 this week: eye doctor, pediatrician, GI doctor. Everyone is pleased with her progress!  We have graduated to seeing the eye doctor every-other week now!!  I asked the GI doctor how long Ella would have to be on the TPN (IV fluids), knowing that she can't give me a definite timeline.  She did say that based on how well Ella is doing that she would be off "sooner than you (I) expect"!  I still don't know what that means, but it made me happy!  

DAY TIME HELP

It's time to start interviewing help.  I do have an ad posted but have not had a chance to go through resumes and prepare myself for how I want to structure interviews.  Mom plans to stick around after I go to work but I told her that we will still need part-time help.  Given we have to feed Ella every 3 hours around the clock AND she needs to be held all day, that's too much for Grandma to do along with me working.  

For longer term help I am back to seriously considering an Au Pair program due to the cost savings compared to a full time Nanny.  An Au Pair is usually a young woman from another country who comes and lives with the family (us) and for a small salary provides 45 hours a week of child care.  Since the cheapest I believe I can get a full time Nanny would be TWICE what I budgeted for Day Care, the Au Pair comes in a good bit less than a domestic Nanny.  

ISOLATION

We are getting by on "Contact Restriction".  I do wake up every day and WISH we could get out and see friends, go places and do things with Ella.  BUT... it's not worth it!  For a baby as premature as Ella it takes the body/lungs/immune system up to TWO years to mature vs. a full term baby.  Germs people carry that they never know about, never make them ill, could send Ella back to the hospital - or worse.  Being home with Ella in isolation is a trillion times better than the alternative!  

We are taking walks, going on drives and trying to maintain contact with the outside world.  I have occasional appointments outside the house and mom had brunch with a friend who was in town this week.  My sister and father are coming to visit this weekend.  Besides the WELCOME extra hands it will also give Grandma and me an opportunity to get out.  I have my Supper Club on Thursday night, if all works out (we have some other things in the works) then hopefully I can meet my girlfriends out for a while.  I plan to send the family out one night over the weekend to give mom some time off.  

There's more to write about, but I need to relive Grandma from a fussy girl, this will have to do for now.  (Right now her fussiness is because she is gassy, which is unfortunately common for an SBS baby).

TWO Weeks at Home!

From CaringBridge.

Today marks TWO weeks at home!! Ella turned 25 weeks old on Monday (she's as old as I was pregnant when she was born)!  Saturday she will be 11 weeks adjusted.  Next Tuesday she will be 6 MONTHS OLD!!!  (I'm telling you this now because who knows when I'll get a chance to post again).  As of yesterday Ella is 9lb 10oz!!  Dr. R increased her feedings a whole 3ml yesterday, she's now eating 45ml/3hr.

We are still loving every minute of being home... well, almost every minute (I'll get to that shortly in the section titled NURSING).  

We stay busy with our doctor and therapy appointments.  We actually only saw the eye doctor this week; hopefully after next week we will get to push our appointments to every other week with the eye doctor.  We are seeing our GI doctor every 2 weeks although I call and report in to her office a couple of times a week on the state of Ella's poo.  We will visit the surgeon for a check-up on the 15th.  We see the pediatrician again next week.  We don't see the Neurologist until next year!

We have Physical Therapy (PT) and Occupational Therapy (OT) each once a week.  Yesterday the CBRS (Childhood Behavioral Rehabilitative Specialist) showed up while PT was here.  The ECI (Early Childhood Intervention) coordinator never confirmed the day/time with me.  Today OT was supposed to come at 8am, we were ready and she called to reschedule (under the weather).  We also had the Infusion Company Nutritionist visit today.  Friday the ECI Nutritionist is coming (do I need both, probably not but I have to meet them to figure out what they do to determine what we do and don't need).  Don't worry if you can't follow what I'm talking about... I am still trying to figure out who all of these people are and what their role is in Ella's development.

It's kind of ironic that we are on contact restriction with all of these caregivers, right?  I'll get it streamlined, it just takes a little time.

Tomorrow we are having our first professional photos taken!  The dilemma... what will Ella wear!?!?

Ella just rolls with it all.  She cares about eating every three hours, taking things in for a while and sleeping.  If PT shows up and she isn't in the mood... well, she's just not in the mood.  Thankfully, PT & OT are skilled with calming babies as well as assessing and exercising them.  We have lots of homework exercises too.

We have been taking her out in the stroller for walks as well as her Ergo carrier (we use that for walks & around the house).  We did take our first INTENTIONAL car ride earlier this week, the sole purpose was to calm a fussy girl.  

She is still sleeping really well.  We still have night help coming in two nights a week.  Ella has recently started to get a 'fussy time of day' late afternoon/early evening until bedtime.  She doesn't fuss the entire time but she is notably fussy.  It was hard to leave her with our night help last night and listen to her cry, fighting sleep, and not go out to hold her.  Thankfully she calmed before I turned my own lights out.

She continues to give us the greatest smiles!  Her coo's and noises are so fun to hear!  She seems to be starting to mimic when we make a noise to her she repeats it, and so on.  We are still waiting on a laugh...  But she's absolutely adorable when she sneezes... she will sneeze and then act like she's going to sneeze again, you hear "ah.... ah..." (in that tiny baby voice) and then NOTHING. No second sneeze.  She cracks us up!!

NURSING

Last week I learned that out of the four SBS babies that the Infusion Company supports who recently were discharged, we are the ONLY ones who came home without private duty nursing in place!!  I'm a little astounded that whatever needed to happen didn't happen to get us set up, but I've been working on it since then.  I went down to DSS on Friday to figure out our Medicade coverage.  According to them we are still covered and we are eligible for private nursing; the nursing company just has to do an assessment and file the paperwork.  

Sounds simple.

It's been a lot more involved and every step involves "hurry up & wait".  The current nursing company got the paperwork submitted today.  I have a different nursing company, specialized in pediatrics, coming out to do an assessment tomorrow.  I hope that we will have private nursing in place very soon which will at the very least cover hanging Ella's TPN every night... anything else would just be a bonus.

Last Friday I cried "Uncle".  No more hanging Ella's TPN for Mommy!  The stress and aggravation it causes me just takes away my JOY of having Ella home.  I told the Home Health company that I wanted someone to come in to hang her fluids every night until we get the private nursing in place.  

Of course, this request is complicated too.  

Last night was the first night since then that I did it on my own again... and had problems with priming the line again... and ended up calling the on-call nurse to send our nurse out after all.  I have become the Infusion Company/Home Health's "problem child", in the sense that I refuse to do the nursing care myself anymore.  

Even though Insurance provides us with 120 Home Health visits annually (includes all of the therapists, etc), the Infusion Company is telling me that I can only use so many a month in nursing...  I said I don't care what we have to do to have someone out here every night, we need to work something out.  I'm on the phone with these various people a lot every day.  For now, I have to call the Infusion Company every day and explain this same thing every day in order to convince them to authorize a nurse to come out each evening.  It makes me feel like a PITA but it's worth the peace of mind it gives me in the end. 

That's the battle... 

But the nights we have had someone here to hang her fluids, where I could be Mom, not Nurse... those nights have been wonderful!  While I'll always worry a little bit about the technical nursing parts of Ella's care, I don't have to "own" it.  The first night, Friday... Grandma and I were able to have dinner and then I was able to sit on the couch and hold Ella while Grandma and I enjoyed a glass of wine!  It was a perfect evening.  

I don't expect every evening to be perfect but I do plan to have a NURSE here every evening to hang Ella's fluids.  If I have to be a PITA to make that happen, so be it.