Sunday, July 28, 2013

Day 58 NICU - Going home!

On Friday, July 26, Clarity finally came home at the age of 8 weeks, 2 days. She's still on 1/8 liter of O2 and wears a pulse oximeter. She gets 68ml of 22 calorie fortified breastmilk through her g-tube every 3 hours along with a dose of sildenafil every 8 hours. She'll be done with her ativan  and  methadone weans in a few days.

It's not like bringing a regular newborn home.  Between the constant alarms from her pulse ox and g-tube feedings that last one hour out of every three, we got almost no sleep on her first night home.  The second one went better after we tweaked the oxygen up a bit and she's keeping in her narrow allowed range (95-99%) more consistently. She seems to like 5/32 liter (which is not on the scale but 1/8 sats a little low and 3/16 ends up satting 100% a bit too much). Mom's going to start helping me out on Monday and I'll get to skip one feeding during the afternoon and get one consolidated sleep period (longer than 1 1/2 hours) each day.
Headed out of the NICU (Clarity is in my wagon, her feet visible covered by a blue blanket.
 The girls strapped in for their first ride together.

Clarity's first meal at home

Our first family meal
Cousin Cullan's birthday party at the park, the day after we got home.
Clarity's stroller is visible in the upper right.

Her first follow up visit to her regular pediatrician is on Monday morning. It will be interesting to see what they feel comfortable handling and what we'll need to follow up with the specialists at Children's through the years.

Thursday, July 18, 2013

Day 50 NICU Yum!

Little Ms. Claire Bear has started working pretty hard learning how to breastfeed over the last two days. The occupational therapist was impressed that she managed to get a few good sucks and swallows on her first attempt yesterday. We repeated the feat today with more confidence.  She's doing a fantastic job. She's at full feeds now (20ml/hr) through the g-tube and just today they started condensing them so they are no longer continuous. She has been receiving 60ml over 2 1/2 hours today then having 1/2 hour off. Tomorrow it will go to 60ml over 2 hours with an hour of rest and so on until she's getting her whole 2 oz. feed every three hours over the course of 30-45 minutes. Soon, we'll be starting that time by putting her to breast and then putting however much more she needs through the tube afterwards. (We'll determine how much she ate at the breast by weighing her before and after.)

She had her first thorough sponge bath since birth a couple days ago. She seemed to enjoy it and even fell asleep as I was massaging her scalp to get some of the cradle cap off. The shampoo plus letting it partially dry before I brushed it has left her with a pretty crazy fluffy hairstyle.

 Since we stopped continuous feeds today, this was the first time we've removed the feeding extension from her button. Here she is with it all closed up. It and her oxygen cannula are the last things she needs. Through her g-tube she still receives methadone and atavan (continuing to wean on those), sildenafil (for her pulmonary hypertension), and vitamin D. The last IV came out yesterday and everything else is just for monitoring.

When she's being played with and talked to, she rewards nurses and family members with a huge grin. I still haven't managed to catch a photo of it. Needless to say though, it wins her lots of friends.

Tuesday, July 16, 2013

Summer Garden

I finally have a garden to post pictures of again.  Everything is growing fairly well. There are lots of green tomatoes and tiny beginnings of peppers. The squash at the far side seem to have something gnawing on them. I need to plant another route of nasturtiums  and other flowers next year so the bugs can get sated on them before they get to my food plants. I think we'll get some squash and cucumbers anyway.

Sunday morning, I noticed that I no longer saw any blossoms on the peas. Realizing that I'd actually been admiring them several days ago, it dawned on me that they may have become peas. ( Doh!  Time flies.)  Sure enough, I got a pretty good harvest.  Last night Daddy taught Wil how to pop them out of the shell and they did enough for dinner.  Wil would have kept going by herself forever, I  think.  Bedtime intervened.

 Her love of work delights me. I  know it's a toddler phase but hopefully we can make it habit during these early days and she keeps it up.  She loves setting and clearing the table, one fork or napkin at a time, back and forth.  When I'm cooking,  she sweeps the kitchen and "empties"  the dust pan into the trash.  If only she ever got anything into it.  At the park, her favorite activity is gathering up discarded water bottles and bits of trash and putting them in the trash can.  She's getting pretty good at stacking up her little "mouth mops" when we fold laundry but she hasn't quite mastered spreading something bigger out flat and folding it yet.  This shortcoming frustrates her so I'm sure she'll get it mastered soon with as hard as she works. Keep up the good work, big girl!

Sunday, July 14, 2013

Day 44/45 NICU Post-op

Pre-op family photo

Immediately post-op
I was telling the nurse the other day that a tiny silver lining of Clarity's circumstances is that she is getting way more photos taken of her and much better documentation of her early life than many second born children.

We have been thrilled with how Clarity has done after her surgery. She came back up to her room for recovery and she was already back on her nasal cannula at that point. She's had a few doses of morphine but they're weaning her back off of that pretty quickly.

While she was under, they did a bronchoscopy to check on her lungs and suctioned out quite a bit of mucusy secretions but there was no sign of infection. It looks like the aspirant just mildly irritated her lungs and now the output they produced to deal with it has been cleared. Her lungs showed no signs of "floppiness", which suggests that the tissue is healthy and functioning properly. All of this was good news. Poor girl seems to have a bit of an irritated throat after all that though. She's been drooling a lot again as though she's avoiding swallowing and there has been a tiny amount of bloody tinge a couple of times.

They started tiny "trophic" feeds into her tube (1 ml/hr continuous) on the day after surgery and started increasing them by 1 ml/hr every 6 hours on Saturday at 12p. Assuming she continues tolerating them we'll be back up at full feeds by midweek and then they can start working on making them non-continuous.

I got to learn how to change the g-tube dressing on the day after surgery, easy but precise and careful work. The more carefully the site is protected from irritation, the less likely she is to have complications like granuloma. We'll have a more thorough class soon on how to care for it as one of our steps toward getting home. I'm still hoping we won't have to have it for very long after we get home but we'll see. Oral feeding trials will start as soon as she's feeling better from the surgery.

I got to hold her for a nice long time on Saturday and she spent a long time in the quiet alert state, taking it all in. I'm so looking forward to bringing her home. I'm not sure if feeding or O2 requirements will be our more time consuming factor for getting home. I think that once she's on full stomach feeds through the g-tube she can be released. I haven't been able to get a good handle on how close she is regarding O2. Apparently she can go home on 25-50cc but can't find a good way to translate between that and her current 40% at 1l flow. I think it will be easier to estimate when they put her back on the wall (100%) and decrease flow, since I believe we will then be working at the same scale that home O2 works. My fear of having her home with O2 and feeding needs like that is gradually getting overcome by a desire to just get out of the NICU to let her start leading a more normal life. As she's becoming more awake and starting to hit places for developmental milestones, I'm more and more struck by how hospital life, no matter how carefully done, can not compare to the healthy stimulation of home life. Let's hope that the g-tube was the answer and she'll rapidly continue to improve now.

Tuesday, July 9, 2013

Day 41 NICU - Photobomb and Getting Ready for Another Surgery

Look Mom, no IVs! And I now weigh 6 1/2 lbs.!

No IVs = ability to wear sleeves; not that her arms stay in anyway

Lower doses of methadone and atavan mean we get to see her awake a lot more.

"Auntie" Sarah (and husband Chris) visited from Wisconsin
over the 4th of July weekend. We're so lucky these dear friends
were able to come and stay.

So awake for Daddy

Grandpa got to hold Clarity for the first time on June 28.
Willow wanted to share his lap too.

After my last post at the beginning of last week, Clarity was continuing to have fast breathing and heart rate with increased need for respiratory support. Her blood work indicated she was low on hematocrit so she got a blood transfusion on Tuesday, July 2, followed by a dose of Lasix because her fluid output had decreased a little. This made her very happy; her heart rate and breathing decreased and her saturations have been holding more steady again.

Several days of chest x-rays, however, suggested that a little cloudy something in her right lung was likely aspirated reflux. She hasn't been spitting up but she's been refluxing high enough to be "silently" aspirating some of her feeds. The slight decrease in lung function on an already compromised respiratory system is causing her to need the additional O2 and it would only continue to get worse if we continued full feeds into her stomach and didn't fix it. The short term solution was to place her nasogastric (NG, nose to stomach) feeding tube farther down so it's delivering milk directly to the beginning of her small intestines.

GERD (gastroesophageal reflux disease) is extremely common in CDH kids, especially ones like Clarity who have their stomach in their chest at birth. The point where the top of her stomach meets the esophagus is too wide and allows stomach contents to escape. The fix is a Nissen fundoplication (described here). The surgery allows food to go down but nothing can come back up. Due to this side effect, babies always have a g-tube placed in conjunction with the Nissen so they can be "burped" by venting the tube. She will also start receiving her milk this way in the beginning as we continue the work of teaching her how to feed orally. 

Ideally, we will manage to get her to start taking all of her calories by mouth, the g-tube will be used only for venting, and it won't have to stay in very long. Fingers crossed. At this point though, the Nissen is necessary for her to continue getting better so if we have to continue feeding her through the tube for an extended period of time, it's a small price to pay. Many children, for a variety of reasons, have g-tubes for several years. If she's just got a g-tube and is on minimal oxygen (or none!) we'll be able to take her home - which is an event that I'm really kind of getting antsy for. Being patient is becoming more difficult as we've been stuck for the last couple of weeks with tiny steps backwards and no forward progress.

Surgery is theoretically scheduled for late this week. It's going to be harder this time to see her afterwards with another line, heavily sedated, and on a ventilator again for a few days now that we've seen her looking so "healthy" (everything is relative, right?) Oh well, she's a tough girl and she's already made it through one major surgery in her short life. Our job is just to support her and advocate for her best interest as she takes whatever journey she's meant to take. It's pretty amazing to think about her path already - she'll be 6 weeks old tomorrow (July 10)!

Poor Willow got her very first stomach bug on Sunday afternoon and spent all of Monday at home with Mama, sleeping and feeling lousy. She was truly pathetic but that didn't stop me from enjoying all of the cuddles from my usually super-energized girl.

Tuesday, July 2, 2013

Day 34 NICU

 There's not a lot to report but just wanted to say hi!  We really appreciate all the family and friends who are keeping up with our beloved girl's progress.

Clarity has not had any problems with her stomach since they pulled the tubes.  She's got a  nasogastric tube  that runs directly to her stomach now (instead of her intestines)  and she's  getting 6 ml/hour of milk currently,  increasing by 1 ml/hr  every 12  hours until we get to 16 or 17.  We got to try a little bottle feeding over the weekend but it seemed like it was really tiring her out and causing stress so we've pulled back.  She's just over 6lbs.  now, so we know she's getting what she needs.  So funny that she still  weighs les than our little Wil did when she was born (6lb 10oz).

 Yesterday  she started having some tachypnea (fast breathing)  and  minor tachycardia (fast heartrate)  so they're keeping a close eye on her today.  Her lungs are nice and clear (chest x-ray)  so they're just doing everything to let her rest.  We're skipping the methadone step down that was due today and that's also why we went back to continuous feeds.  Her O2  had been at .4l  from the 100%  at the wall and they put her back up to 1l  flow at 40%  on the wall to give her a little extra support as she figures this out.  If it isn't one thing it's another.

 We had our first visit from  physical therapy (PT) yesterday.  It was near to see how they work with these little ones to release the muscle tension that results from her extra work of breathing and lying in her bed so much.  We're going to also start having visits from  occupational  therapy (OT)  as we start bottle feeding (known as "nippling"  around here).

 All that said,  she's spending more  time awake and watching us.  She's also started this adorable smiling thing. I  don't care what people say,  little ones do smile when they're happy (unless she only gets gas when she's looking at one of us).  Five weeks old tomorrow!