My Little Princess

Everly is 3 months old today.  Matt and I both agree that the past 3 months have felt like the longest, most stressful 3 months of our lives.  During that time we had a baby, moved, remodeled our new home, traveled to and from the hospital to visit Everly in the NICU for almost 7 weeks, hosted family for Everly's baby blessing, celebrated 2 birthdays and Thanksgiving, and have tried our best to fall into a new "normal".  Life is very different than I had expected it to be at this point.  I knew I would be busy with three small children four and under, but this is taking it to a whole new level.  This kind of life is a challenge for a person like myself.  I like to be prepared. I like to feel in control and to know what to expect.  I like a loose routine and so do my kids. This experience has been humbling.  The Lord has taught me how to rely on Him and his faithful servants.  To ask for help repeatedly and to accept help when all I wanted was to be made capable of doing it all on my own.  I've seen true charity first hand and most importantly I've been taught how to be more charitable, compassionate, and sympathetic.  The purpose of this "challenge", although I'd rather see it as a blessing, is beginning to unveil itself and will continue to over time.  I'm more aware and grateful for the good in my life. I'm grateful for my little princess who came a little early and a little sick. She is thriving and growing.  I can't wait to watch Everly grow, meet milestones, and get stronger and healthier over time. Today she was awake and pleasant for 6 hours straight (longer than she normally is awake all day by a long shot) , made good eye contact, and showered me with lots of smiles.  It was a tender mercy that filled my heart with joy.  I love my little princess.

An Anthro Inspired Baby Shower

My amazing friend Molly is the biggest Anthro (as in Anthropologie the store) enthusiast I know and quite possibly the most creatively talented person I know as well.  I am lucky enough to not only be her friend, but to also benefit from her talents.  She insisted on throwing me a baby shower the moment she heard we were having a girl.  I know it seems silly to have a baby shower for a third baby, but when Molly insists you throw your hands up and say yes please!  This shower was like no other I've been to.  Everly's name and nursery colors (fuscia, rust orange, and baby blue) was all she needed to create the most beautiful and fun shower you could imagine.  Take a look at this creative genius at work and check out her blog entries!  I think you'll be wishing she were you're friend the next time you have a baby.  Thanks Molly!

http://anthromollogies.com/2013/12/02/paint-pantone-themed-baby-shower/

http://anthromollogies.com/2013/12/06/paint-and-pantone-themed-baby-shower-part-deux/

Surgery Day

We have entered into the final phase of Everly's NICU stay with her surgery now behind us.
Today she had the gastrointestinal tube (or gtube) put in place and the Nissen Wrap. The Nissen Wrap is supposed to stop reflux by preventing the baby from being able to throw up. This is accomplished by wrapping a portion of the upper stomach around the base of the esophagus. It is common for surgeons to accompany a Nissan Wrap with the gtube because a gtube typically increases reflux. In Everly's case she was already very irritable from moderate reflux. We hope that this prayerful decision to do the Nissen was the right one. Another update from this past week is that Everly has received ear molds to help mold them into a pretty shape and placement. Her ears were not terribly malformed, but the plastic surgeon noticed that one was "cupping" while the other was very "flat". Both stuck out more than what's considered normal and would continue to stick out more as she grows. The good news is that in the first 4 weeks of birth the ears are so maleable that the dr can mold them into a nicer shape. Everly barely made the cut by having the molds done at just over 4 weeks of age. The molds are a great non surgical option and they are also covered by insurance. That's a rarity for insurance to cover 100% of anything so of course we were on board. I will say that she looks pretty cute with those ear muffs. She's my darling little Princess Leia. Now looking forward we can expect Everly to start her recovery and head home by the first week of November. We are getting close!

 Pre-surgery

If you turn up the volume on this video, you can hear baby girl snoring.  I'd say she was quite comfortable after her surgery. 

1 Month

Everly is 1 month old today and weighs in at a whopping 9lbs and 20.5 inches!  When I realized the possible extend of her NICU stay, i toted all her newborn clothes to the hospital so she could get her use out of them. The nurses are having fun dressing up my baby doll in her pink, polka dots, and bows.  Here are some 1 month old pictures and an updated status on Everly.

• Everly will be on the insulin regulating medicine, Diazoxide, for up to 1 year.  We will check her glucose levels at home. The only side effect to this medicine is "unsightly amounts" of body hair.  Whoa!  Matt and I had a good laugh about that, but we may not be laughing in a few months when our baby looks more like a little monkey.  
• The second genetic test, micro array, came back normal!  We are so happy to finally know that our baby girl doesn't have a genetic disorder.  
• She was put on Prilosec to control her reflux.  Since being on the medicine, Everly has been a different baby. She is much happier and has been able to catch up on her sleep.  
• Tomorrow she will have an Upper GI.
• Everly continues to have a difficult time eating and no progress has been made with the bottle.  If the upper GI looks good, Everly will be scheduled to have g (gastrointestinal) tube put in place.  This will allow us to feed her directly to the stomach. We will continue to practice bottle feeding at home. In the meantime, the g tube allows her to get full feedings, proper nutrition and sugars for her growth and development.  This will take the stress out of feedings for us. 

3 week update

I never expected that Everly would still be in NICU 3 weeks after being born. I guess I was a bit oblivious, or maybe just hopeful, that her condition wasn't so serious.  But the good news is that Everly is doing much better than her first week in NICU and is making strides each day. Since coming off of ivs and oxygen, we can tell that Everly feels more comfortable. Her tone, color, and manner has drastically improved.  This past week we got confirmation that Everly has congenital pseudoarthrosis of the clavicle. We can opt to do surgery or just let it be. The condition is not painful nor does it giver her much physical limitations, unless she is very active. If she is anything like me and loves to be active and play sports than we will most likely do the surgery. Feedings continue to be a challenge. Speech therapy attempts to bottle feed her once per day. Everly has become quite content with tube feedings and does not like the idea of having to work for her food. In fact, she purely despises the milk the instant it hits her tongue. She has maxed out at 10mls through the bottle and her feedings are 75mls so there is a lot of work to do before she can come home. Regular feedings (both with frequency and volume) are critical to maintaining Everly's blood sugars so we have temporarily ommitted breast feeding until she is more stable.  I am glad she still gets my breast milk through the tube feedings though. The endocrinologist saw Everly on Wednesday and placed her on diazoxide, which is a temporary 3 week dose of medicine, that is intended to regulate insulin production. Everly cannot come home until she completes her dose. Although we are very anxious to have her home and to get into a regular routine we are ok with whatever time she needs in the NICU to be healthy. I don't want to have any scares when we have her home.

Prayers in Action

Everly made excellent progress yesterday and today we received the biggest piece of news yet.  The chromosome test that we've been waiting on for 7 days came back NORMAL!  This is a huge relief!  Matt and I both needed to hear some good news.  Our prayers are being answered.  Dr.'s are drawing additional labs today to rule out more specific chromosome disorders, but Matt and I both feel optimistic that Everly does not have any chromosome disorder.  Baby girl is also completely off of all iv's (including her glucose) and her lungs look nice and clear so she is being weaned off of her oxygen as well.  Everly does continue to get glucose testing every 6 hours, rather than every 3, just to make sure her levels are maintained where they should be.  Dr's will monitor her sugars for the duration of her stay.  The last hurdle is getting her to eat from breast or bottle without problems for 48 consecutive hours.  We are so pleased with Everly's progress and are grateful for all the prayers, love, and support that we have received on her behalf.  We have truly seen charity in action.

Not Just Another Rainy Day

Both of my babies were born on rainy days.  So when I saw the forecast for rain in the coming week I had a hunch that baby girl might be making her big appearance.  And sure enough I was right.  Let me tell you how it all went down.

Last Sunday I woke up feeling a bit off.  Not good, not bad, just off.  I knew my body well enough to know that this was probably the brewing of labor.  We went about our day as normal.  Went to church, came home and ate lunch, hung out, and then I took a little snooze to try and rest up.  I woke up to some bleeding so I put a call into the dr. to get assurance that this was ok and nothing to be concerned about.  The on call dr. confirmed that I was probably in the early stages of labor.  She said I could start walking to speed up the process or rest and drink water to prolong it.  Matt had one of the busiest work days he's ever had scheduled for that Monday morning, so we rested up to try and push off the labor process just one more day.  But I knew our plan wouldn't work.  We went to family dinner, came home and put the kids to bed, and got some bags packed just in case tonight was the night.  By 11pm I was having regular contractions about 5 minutes apart and the bleeding was increasing.  I decided to try and sleep through it and went to bed.  At 2:30 the contractions awoke me from sleep. What a better time than now to get a few things done right?  I unloaded the dishwasher, finished some laundry, and did a little Primary work.  At 4am I rolled myself back into bed to try and sleep just one last time, but there was no way Matt would let me go to bed.  He told me to just go the hospital because "We are not going to have this baby at home."  This is one of Matt's greatest fears.  I agreed and drove to the hospital.  The nurses quickly got me settled into the room, checked my progress (I was dilated to a 4), admitted me, got my epidural around 6am, and broke my water at 7am.  Matt  came to the hospital shortly following and by 10am I was dilated to a 10 and ready to push.  My dr came in and two pushes later baby girl came flying out in a gush of green amniotic fluid (meconium) that sprayed my obstetrician as if she was sitting in the front row of the Shamu show.  She was covered in poopy green amniotic fluid!  It was hilarious! Matt and I were literally on the verge of a laughing attack.  My dr. just stood in shock holding our baby girl.  Her face was priceless.  She will never forget that delivery thats for dang sure.  Thankfully my dr. had a great sense of humor and could laugh it off. My labor and delivery could not have gone more smoothly.  Baby girl was cleaned off, wrapped up, and handed over to me for a brief time (maybe 10 minutes in all) before the nurses decided to take her to the nursery to warm her up.  That was the last I saw of Everly for several hours.

The NICU dr. came to my room about an hour after delivery to tell me that my baby had been taken to the NICU for a couple reasons: low oxygen saturation levels, undetectably low blood sugars, and low tone.  I wasn't too concerned at the time but I realize that I was probably a little disoriented, which maybe was a good thing.  I was taken to a postpartum room and settled in for awhile until I could start to move my legs again (thanks to the lovely epidural that takes away all your pains but also leaves you bedridden for a few hours).  In the meantime Matt went down to check on Everly.  He got quite the scare when he walked in to see 4 nurses crowded around our baby trying to get her to breathe.  They were successful in getting her oxygen but Matt returned to my room quite shaken by the whole thing.  A couple hours later I was able to see her.  She had a breathing tube through her nose and was still gasping for air.  It was a sad moment but I knew that she was in good hands and had peace about that.  I returned to my room to recover while Matt and his dad gave Everly a blessing.  The following morning I awoke to my OBGYN sitting on my bed.  She had visited Everly in the NICU and had reviewed my charts to see if she could piece anything together in regards to her sugar levels.  At that time she also brought up other concerns about Everly.  The drs. noticed that she had a few physical features that could be telling of a chromosome disorder: low set ears, extra skin or webbing on her neck, and short fingers.  Once again I was a bit disoriented/tired and accepted the news with minimal concern.  Little did I realize what this could mean until later.

Fast forward a week and here we are.  Everly has made some strides in the past week, but progress is slow. There is a lot going so allow me to bullet point what's happening.

• Low Saturation Levels- her chest is "wet" or "cloudy" so she is back on oxygen and will be weaned off of it over the next 4 days
• Low Blood Sugars- she is on an extremely high concentration of glucose (17.5%) given through a central line in the belly button.  This is 3-4 times higher concentration than most babies born to mothers with gestational diabetes.  They are currently weaning her off of it but its a slow process because they don't want her sugars to drop too low.  Glucose blood tests are taken every 3 hours and as long as her levels are in a normal range (55-90) they can reduce her rate of intake.  If her levels fall below 50 they will take more labs to test all parts of the endocrine system.  This should give us some answers as to why she is hypoglycemic.  She has to be completely off of glucose and iv's and stable for 48 hours before she can go home.  
• Skin tag on right ear- Apparently the ears and kidneys develop at the same time.  Any physical differences in the ear is an automatic red flag to test the kidneys for potential problems.  She has something called a "duplex" kidney.  The kidney has one area where the bile filters into and Everly has two areas where the bile filters to.  This is not a major concern but she will need to see another dr. concerning that down the line.  
• Unfused or broken clavicle- Today we found out that Everly's clavicle was possibly broken during delivery (which is very common and painless) but most likely did not fuse together at all. We are not sure what the next step is with this. 
• Low set ears, short fingers, extra tissue around her neck- all of these physical features are a red flag of a potential chromosome disorder.  Keryotype testing was done last Wednesday and we should have the results back sometime later this week.  The geneticist performed a physical evaluation of Everly today confirmed the physical differences that the neonatologist noticed.  If the keryotype labs come back positive then she will be diagnosed at that time with whatever chromosome disorder she may have.  If it comes back negative, then further chromosome testing will be done to test for more specific chromosome disorders.  The Keryotype labs only test for the overall chromosome X.  
• Tachycardia- Everly has had an elevated heart rate for 2 days.  Dr.s took two heart echoes and thankfully they came back normal.  Her elevated heart rate is suspected to be caused by elevated amounts of glucose and fluids so they have reduced the fluids to help.  
• Feedings- Everly is currently getting regular breast milk + formula feedings through a feeding tube.  She breast fed well for 3 feedings but has been too stressed to do it regularly.  She needs to either be breast or bottle fed (or both) for 48 hours before she can go home.   

Now we just wait and pray that she makes improvements each day so she can come home a healthy baby. She is receiving excellent care from NICU doctors and nurses and we are at peace with whatever challenges our baby girl may have to face down the road.  We love her so much!