Day 13 Update

Bottle feeding went well for Chloe today!  She took 37 and 35 ml without difficulty.  Her mom was quite proud, but did admit that some of it leaked out the side of Chloe's mouth.   Chloe is gaining a little weight each day and is almost her birth weight.

The speech therapist told us that one half of all the cleft palate babies who have surgery like Chloe will have, never need any speech therapy.  The outcome of the other half who have therapy is quite good.

I just looked back through the blog and realized I never explained some of her problems.  Her chart shows " cleft palate, micrognathia, and Arthrogryposis."  The micrognathia refers to an abnormally small jawbone and is also related to Pierre Robin Syndrome.   She has a recessed jaw and chin where her tongue is back and slants upward.  One theory is the tongue filled the area where the palate should have formed.  The jaw and chin should grow and catch up possibly in a year.  This just makes the feeding more difficult.

Comments from Dad

Hello Everyone,

I would just like to thank everyone in our time of both need and joy.  Although there have been many up and downs, the steady stream of prayers and well wishes for our family has been very up lifting.  So far so good, on all reports coming from ACH, so we stay optimistic but cautious with the unknown down the road.  Chloe will need the same support in the coming years, but with surgery and therapy she should make a full recovery.  For anyone who has not been to the Arkansas Children's Hospital it is an amazing place.  Everyday we find out about services they offer or children being sent home when they were never given hope.  We feel blessed to have such a wonderful facility in our state.

I would also like to thank Becky for putting together and maintaining Chloe's blog.  It has been a fantastic communication device, and has allowed us more time to spend with Chloe and less time explaining the same events to multiple followers.  I am still questioning how Chloe already has more friends than I do.  Hopefully the trend doesn't continue and  stress her dad out when she gets to high school.

Adam

 

Day 12

This image shows the portion of the bottle that has to be squeezed so Chloe will get the right amount.  The bottle does not allow for Chloe's sucking to draw out the milk.

This morning, the speech therapist said Mom was 'a natural' and had the confidence to continue to attempt bottle feedings without the presence of a therapist.  She can attempt once more today and twice tomorrow.  The therapist will be back on Monday.  Mom has to master this completely before Dad can begin his training.  So for now he washes out the bottle.

Chloe's doctor reported that she was continuing to gain weight and was doing very well.

Comments from Mom

Thank you so much for all of the prayers, support, and concern for Chloe.  We are touched by everyone's kindness and look forward to sleepless nights and dirty diapers in our own home! 

Chloe does get mad

I decided it was time to show the other side of our sweet angel.  This is what happens when the nurses put the splints on her.  She does stop crying as soon as they are finished.

Today's bottle feedings were 23 ml and 20 ml and Mom is learning to feed her.  It is difficult because she has to squeeze just the right amount for Chloe.   Apparently there is no measurement marker, so it is a trial and error process.  One squeeze was too much and Chloe choked a little so Mom got nervous.  

I failed to mention that two days ago that Chloe passed her hearing test.

Day 11

This is how I found Chloe at 8:30 this morning. She was snoozing! Look close and you can see where she has wiggled her hand free of the velcro and has a good tight fist in spite of the splint!

Moving on Up!

Tonight Chloe was moved to a different NICU.  It contains only ten babies.  Some are older and none of them are as critical as the ones where Chloe has been.  She is in the same bed with same monitors, just in a different room.  

Day 10

Today the bottle feeding went much better.  She had 27 ml in the morning and 36 in the afternoon.  Progress!  Chloe's other grandmother visited today.  Dad and Mom are both learning how to care for Chloe and are getting anxious to take her home.  I should have a picture later to post from today. 

Closer look at the hand splints

I've had several questions about the splints so here is a close up.  There is a white hard piece that fits on the inside of her hand.  The pink and blue velcro hold her fingers in place.  The thumbs are secured to a separate piece of the molding.  It looks like a natural position, but is a little painful for Chloe.   Sometimes it looks like she has two boxing gloves slipping out from her blanket.  During the three hours that she doesn't have to wear them, her hands are back in her favorite positions.  The right one is clenched with the thumb out and pointed up (just like a "thumbs up") and the left one is clenched with her little finger curved and sticking up.  Both are above her shoulders next to her head.

Day 9

Today Chloe didn't have a good bottle feeding in the morning, so another type of nipple was tried in the afternoon.  She took 30 ML which is her best to date.  She is not fond of the splints and  gets quite fussy when they put them on her.  The oxygen was removed so she has only the feed tube in her nose.

The obvious question of how much longer will she have to stay in the NICU has not been answered.   The staff will not even give us a guess.  We know of course the feeding tube has to be removed and Chloe must be getting at least 50 ML eight times a day from a bottle.   Just knowing that she will get better is a blessing, so having patience for healing time is easy.  

Mom is feeling much better!  Dad is still taking care of everyone.  Friends and family brighten their days with love and support.

Hypertension gone!

The hypertension is gone, but they will leave the oxygen in until after she learns to feed.  She will start with a pediatrician tomorrow and this is a step down from seeing a neonatal specialist.   Apparently now, only the feeding issue is keeping her here.  YEA! 

The second bottle feeding was a bust.  She was so tired that she only took 6 ML.  Hope tomorrow goes better for her.

Splints

This image shows the splints that were made just for Chloe.  She wears them for three hours and then rests for three hours.  Her clenched fists, Arthrogryposis (I think this is it?), need physical therapy to stretch or loosen the tendons.  The physical therapist was pleased with the progress made by Mom and Dad over the last two days.  They were periodically rolling out Chloe's fingers.  

Day 8

Chloe started the day with an echocardiogram (ECG) and it will be this afternoon before we get the results.  She was rewarded with a bottle feed and new splints for her hands - Oh Boy!

Will update in awhile when we find out about the splints.

Memorial Day

Chloe celebrated Memorial Day with a bottle feed of 20 ML!  This was double what she took on the last bottle feed two days ago.  This was another quiet and restful day even though Great Grandparents and other friends and family gave Chloe a visit.  Mom's begun to feel better and is getting stronger.  

Again, thanks for all your prayers and sweet messages!

Hands-on Mom

Mom checks Chloe's temp which was normal.

Day Six

Today has been a restful one for Chloe. They've increased the amount of milk she gets and that full tummy puts her to sleep.

Bath Time

Today, they put her back on oxygen to help dilate the blood vessels going from heart to lungs.  She has very mild PPHN (Persistent Pulmonary Hypertension of Newborn.)  The doctor stressed that is was very mild (YEA!)  They will check  her heart flow again on Tuesday.  

The speech path fed Chloe by bottle for one feeding and she took more than she did yesterday.   They'll try a bottle feed again on Monday.

Mom got to bathe Chloe who was quite content to have her head rubbed while they washed her hair.   That was the only part of the bath that she enjoyed.  Afterwards they moved the feed tube to her nose and added an Oxygen tube. This wasn't much fun and gave her a chance to show off her lungs.  After a good cry, warm clean clothes, and feeding, she took a nice long nap.

She is keeping her body temp up and is not under a heater.  She no longer requires an IV.  They have moved her into a bassinet and we are able to hold her more often.  Mom, Dad, and grandparents can be with Chloe an any time except when they close the unit for the shift change of nurses.  There can only be two family members with her at any time and only Mom or Dad can accompany anyone else to see her.  She has a nurse assigned to her for each 12 hour shift and this nurse cares for only one other baby.  The staff are simply phenomenal explaining everything with patience and expertise.

Mom has been recovering at night with her parents, and Adam stays with Chloe.     They are suppose to see a genetic specialist today and maybe test results next week (?)  No one has mentioned how long her stay will be.  I hope this answers some of the questions I've been asked.   God bless you all for your interest, concern, and prayers. 

Day Five AM

Amazing Dad

Dad is totally taking care of Mom and Chloe!  His calm strength is a blessing to all of us.

Day Four 2

Day Four

Chloe began her day with the Speech Path checking her ability to suck.  It was much better than yesterday!  She is getting worked over by a physical therapist at the moment (noon).  A doctor has cleared her for bottle feeding attempts so I guess they will begin with it today(?)

How do you like the off shoulder look - this is about as fashionable as she can be in NICU!  A little humor helps us and so do all the prayers.

Chloe Day Three Update

So far we know...

Chloe will go through tests for two days and then we'll have some decisions about treatments and feeding procedures.  Her doctor said brain, heart, kidney and spine tests were good.  Right now we know she has the cleft palate, clinched fists, and the feeding issues.  She'll have the first surgery for the cleft palate when she is 10-12 months old and the recessed jawbone and chin should grow.  Hopefully her clenched fists can be treated with physical therapy.  We don't know what they will do about the feeding.  Our hope is that nothing else is added to the list.  It is hard to report on these issues as I want to be accurate, and it is all new.  

Right now she has a feeding tube and an IV.  She lays on her side and loves to have those fists near her face.

Mom is doing well but needs some rest so she is staying with me tonight while Dad stays at the hospital.  They are glad to have Chloe at ACH.  The calls and comments from family and friends are so encouraging.  Chloe is one of 76 babies in the NICU-it is amazing.  One grandmother in the waiting room described  it as a "room full of nothing but little angels."

It was a good afternoon-no bad news or tears!   Thanks for all the prayers.

Chloe is in the air!

Chloe's trip to LR was not urgent so she could have made the road trip, but was lucky to catch a ride back to Children's in the helicopter. Dad is half way to LR so should be there to greet her. Mom just watched her take off (approx. 11:30) and will travel with me down there. So it will be this evening before we really have an update. The pediatrician was confident that the speech therapist specialist would be able to help with the feeding and suggested that they might do a little surgery for a feeding tube in her side. He was also hopeful that some of the other concerns would get attention quicker. I'm passing on the kind messages that I'm receiving, and please know that we are all appreciative.

Chloe Day Three - Going to Children's Hospital

Chloe is going to Little Rock today to stay at Children's Hospital for awhile.  Her doctor believes their staff may be better qualified and experienced to help with the feeding issues.    I'll post information as I get it.

Chloe Day Two PM

Chloe was moved to the NIC unit tonight.  We are hoping  the feeding tube will help her to get stronger while she learns to breathe and take a bottle at the same time.  Mom and Dad can visit and hold her at any time.  Before the move she spent several hours in her mom's arms quite content.

I want to mention that Dad is wonderful to both Mom and Chloe!  He changed the first diaper!

Thanks for all the calls, texts, and emails.  Since we don't have good phone reception in the hospital, it is hard to reply to everyone.  We are very grateful for the concern and prayers!  

Chloe Day Two

Natalie is feeling better but has a way to go!  At least she has made it out of bed and had a meal!

Chloe is no longer connected to oxygen and had some good test results today.

At the moment, the two of them are snuggled together in bed :-)

She is here!

Chloe was born at 1:32 PM and weighed in at 5 pounds 10 ounces.  She is 18 inches tall.

She's beautiful!!!  Her mother has had a tough day but was last seen with a smile on her face finally getting to hold Chloe.  There were no picture ops until tonight so not many pictures to post.  I'll try to get some more tomorrow.

Unfortunately, Chloe's roof of her mouth did not develop so she is faced with some struggles.  Please keep Chloe in your prayers.  I promise an update when we know more.

Count Down

Chloe is expected at 1 PM on Tuesday, May 19th !

Chloe will share her birthday with Natalie's Aunt Jenny and other famous folks born on this day:  http://www.historyorb.com/birthdays/may/19 

Chloe is coming!

It is almost time to welcome Chloe into our lives!  Just as she needs space at home, she also needs space online.  Hopefully all friends and family can meet here to celebrate her birth and life. Dad isn't included in many of these pictures, but we all know he's the one who had the real 'fun' - giving up his man room, moving the furniture, putting  together the bed, hanging pictures, curtains etc... bh