Day 8 - Remembering Lilly - February 2011

This is my 8th post in a 17 post series summarizing each of Lilly's 17 months of life.  To learn more details about Lilly's daily life, just click the appropriate month and year of my Blog Archive on the right side.

February 4, 2011 - March 3, 2011

 Lilly turned 7 months old at the hospital, still recovering from the virus.

While there, she had a swallow study to see if she aspirated when she swallowed.  (That can be common for T-18 children.)  Lilly wasn't drinking or eating much by mouth, but I had hoped she would be one day.  So I was very glad to have the test done.  It can back good - Lilly swallowed normally.

So we could keep giving her milk or water by syringe or dropper.

Finally it was almost time for Lilly to be released.  YAY!

Lilly cheering

There was talk among the hospital doctors that Lilly may have sleep apnea so she came home with oxygen for the nights.  I also set up an appointment for a sleep study for her.

One new thing Lilly did this month was to grab on to my finger when my hand was by hers.  It was sweet.  We also began working with a special bottle called a Habermann feeder to try and get Lilly to take her milk that way.  But she never got the hang of it.  She just chewed on it rather than sucking it.

Lilly was our sweetheart for Valentines Day:

At the end of the month, Lilly had a sleep study.  While waiting for it, I took this "famous" picture of her:

The fun and games soon ended though as she had a bunch of wires hooked to her scalp.  I don't know how she managed to sleep but she did some after crying for quite awhile:

In the middle of the night, the tech came in and hooked her up to oxygen.  But they wouldn't tell me what was happening.  They said I had to wait to discuss results with our doctor another time.

Back home I found, much to my delight, that Lilly liked coconut oil.  A wonderful healthy fat to help add weight to our girl!

 

Notice Lilly's arms in this picture.  She kept trying to pull her NG tube out!  Poor baby's cheek looked so irritated from the tape.

"He gives strength to the weary and increases the power of the weak."- Isaiah 40:29

Day 7 - Remembering Lilly - January 2011

This is my 7th post in a 17 post series summarizing each of Lilly's 17 months of life.  To learn more details about Lilly's daily life, just click the appropriate month and year of my Blog Archive on the right side.

January 4, 2011 - February 3, 2011

Making it to 6 months old is another huge milestone in the world of Trisomy 18!  Lilly continued to gain weight and made it to 8 pounds that month.  She measured at 22 inches long.  It was exciting to move her up from the preemie sized diapers to newborn sizes.  (I used cloth diapers on her during the day and disposables at night.)

I began trying different tapes on Lilly's face to hold the NG tube, as they were irritating her.  (I don't remember which one we ended up with.)

One of Lilly's "quirks" was sleeping with her eyes cracked open.  She did not always do this, but it was pretty regular.  I learned that was a "normal" Trisomy 18 thing.  (Some older T-18 children end up needing to get a procedure done on their eyes after sleeping like this for years.)

Since Lilly had all her feeds go directly to her tummy, we figured her mouth got dry at times.  So several times a day, we would soak a "sponge on a stick" with water and she would lick and chew it.  One day I discovered she really liked drinking through a syringe.  That made us both happy!

Most of January went well for Lilly though she did start getting a lot of congestion towards the end of the month.

Then one morning I woke up in the wee hours of dawn and realized Lilly's breathing didn't sound right at all.  We ended up in the emergency room.  (It was my first trip ever to one.)  I remember holding her and trying to explain to the doctor on call about what was wrong but he just kept staring at me and Lilly.  Then when I stopped speaking, he said "Are you sure she has Trisomy 18?"  and then "She's 6 month's old?!" then finally "Has anyone ever told you the prognosis of that disorder?"  Duh.  I remember feeling frustration mixed with triumph. Yes my daughter had full Trisomy 18 and WAS ALIVE!  But I was scared she wouldn't be for long if he didn't do something!

They finally got Lilly started on oxygen but the smallest mask they had was a too big so I had to hold it against her face.  Shortly after she was transferred to a hospital with a PICU.  (Special children's unit.)  Lilly and I traveled by ambulance.  I was terrified but admit I thought it was rather disappointing the driver didn't put on the siren as we traveled to the other hospital.

Lilly had a C-Pap mask on to get oxygen.  It helped immensely.  I called it her "fighter pilot" mask.

Through x-rays and tests we learned that Lilly most likely had some sort of virus.  Her heart and lungs had a lot of extra fluid in them and her heart had enlarged to a very large size.

Earlier today, as I was reading back through my blog posts from that time, I was very interested to read something I had forgotten about.  One doctor (not a cardiologist) at that hospital had told us that even if Lilly did get her VSD in her heart repaired, she could still die of heart failure.  Today I sat and thought about this.  We still don't know for sure why Lilly died.  (And she had had her VSD repaired by then.)  Frank personally thinks her heart just gave out.  Perhaps what this doctor had predicted did happen. 

To the all the doctors and nurses surprise, Lilly fought hard!  There were ups and downs but as she recovered, she even began to play Sneaky Lilly:

 

Lilly wound down her 6th month, still in the hospital.

Now that's a surprised look!

 "For he will command his angels concerning you to guard you in all your ways;" - Psalm 91:11

Day 6 - Remembering Lilly - December 2010

This is my 6th post in a 17 post series summarizing each of Lilly's 17 months of life.  To learn more details about Lilly's daily life, just click the appropriate month and year of my Blog Archive on the right side.

December 4, 2010 - January 3, 2011

 Lilly celebrated her 5th month anniversary by getting to see snow for the first time!  You can't see it in this picture well, but there were big snowflakes falling for a little while.

Another biggie this month was when Lilly finally hit 7 pounds!  And I finally got to pack away the newborn sized clothing and start dressing her in the 0-3 month size.

Lilly began pulling out her NG tube more - which was one trick I did not like!  But I certainly didn't blame her.  I'm sure I would have wanted to do the same thing.

Lilly's apple hat and mary janes were knitted by Mrs. L - the owner of the goats we are caring for

 It was exciting to take Lilly to the Christmas Tree farm that we go to every year to cut a tree.  It was a cold yucky day, but she was bundled up warmly.

Our Lilly tree topper

Lilly's bouncy seat sat on top of our kitchen table.  I would put her in it when I was preparing meals and when we were eating.  This month she really began to enjoy being in the seat and whenever I put her in it, she would smile at the animals hanging down.  It was exciting to see the recognition in her eyes.

 

Speaking of Lilly's eyes - sometimes when she looked at something her gaze would "bounce."  I learned this was pretty common for these babies.  I printed shooting targets out and hung them for her to look at to practice focusing.  (Eventually the "bouncing eyes" went away.)

Our best Christmas present this year was having Lilly with us.  (It turned out to be the only Christmas we had with her.)  She spent a lot of the day napping!

Shortly after Christmas we had a good snow.  It was awfully bright out for Lilly (her eyes were sensitive to the sun) but we had to take her out for a few minutes to let her experience it.

As I'm selecting pictures over these last few days to post, it has really struck me how much of a difference a couple pounds made for Lilly.  Not only did she feel better but she looked better.

And how fun.  Lilly learned the fine art of blowing spit bubbles!

"For no matter how many promises God has made, they are “Yes” in Christ. And so through him the “Amen” is spoken by us to the glory of God." - 2 Corinthians 1:20

Day 5 - Remembering Lilly - November 2010

This is my 5th post in a 17 post series summarizing each of Lilly's 17 months of life.  To learn more details about Lilly's daily life, just click the appropriate month and year of my Blog Archive on the right side.

November 4, 2010 - December 3, 2010

 
Lilly turned 4 months old on Nov. 4, 2010.  We were thrilled every new month she reached.  It was a time of celebration!

During this month, I began to get in contact with a lot more of the Trisomy 18 community online.  (I previously was in contact with two T-18 mom's.)  Talking by phone and email I tried to learn as much as I could.  There are a number of Trisomy 18 blogs out there which were exciting to find.

Children with Trisomy 18 are delayed in most things it seems.  But this month was exciting because Lilly finally started doing a bunch of younger baby things.

The most glorious was when she began to smile!

Lilly also began to put her knuckles into her mouth.  Because her hands were still clenched, it was her knuckle that went into her mouth, instead of a finger.

She discovered her tongue and enjoyed sticking it out.

 

She loved the word "boo" and whenever we'd say it she would react with a noise.

For Lilly's first Thanksgiving, I traced her hand for a turkey hand print.  That clenched little hand made an interesting little turkey:

Finally, Lilly began to get quite chatty.  She could go on for awhile doing her baby babbling.  She liked "talking" the most at night, once Tabby and Hunter were in bed.  I guess she felt like she didn't have to compete with the other chatterboxes in the house!

bundled up soft and snugly for an outing

So all in all, it was an exciting month for new things!

"Because of the Lord’s great love we are not consumed, for his compassions never fail.  They are new every morning; great is your faithfulness." - Lamentations 3:22-23

Day 4: Remembering Lilly - October 2010

This is my 4th post in a 17 post series summarizing each of Lilly's 17 months of life.  To learn more details about Lilly's daily life, just click the appropriate month and year of my Blog Archive on the right side.

October 4, 2010 - November 3, 2010

 Not long after Lilly turned 3 months old, we returned to North Carolina from the hospital in Florida.  Part of the new "getting back to normal" was to learn to carry Lilly around places along with her Kangaroo Joey feeding pump.  She was on "continuous feed" which meant she got milk 24/7.  (It was at a very slow rate.)  The pump was hooked onto a tall pole with wheels.  Or when we went outside or somewhere, we put the pump into a little backpack.

But our main concern was to maneuver Lilly safely around without catching her feeding tube on anything.  I also had to start to change her feeding tube weekly.  Sometimes it went smoothly, other times we would both be in tears.

Then one day, Lilly got a new nickname:  "Sneaky Lilly."  She developed a knack for kicking off one sock without anyone ever seeing her do it.  It made us laugh - often in amazement - and to this day when we see a child with only one sock on we think "Sneaky Lilly."

Lilly must have been playing possum here!

We were happy to be able to take her with us to the pumpkin patch:

Here Lilly is wearing a beautiful pink smocked dress with matching bonnet.  Those of you reading this that work with my husband might think it sweet to know that the dress was given to her from J.M., the Latin teacher, that sadly passed away earlier this year.

 

Lilly got her first cold this month but pulled through it well.  She also made it to 6 pounds by the end of the month - that was so exciting!

Hello up there!

"I lift up my eyes to the mountains— where does my help come from? My help comes from the Lord, the Maker of heaven and earth." - Psalm 121:1-2

Day 3: Remembering Lilly - September 2010

This is my 3rd post in a 17 post series summarizing each of Lilly's 17 months of life.  To learn more details about Lilly's daily life, just click the appropriate month and year of my Blog Archive on the right side.

September 4, 2010 - October 3, 2010

On Labor Day weekend, we took Lilly with us to visit Frank's family at their river house in eastern N.C.  Lilly's weight was slowly dropping and she was having to work harder to eat.  (Her heart was to blame for this.)  She was hurting more and cried a lot of the night, making me cry too.

She finally fell into a restless sleep towards morning.  She looked so sweet sleeping on the couch she shared with me:

 
Once home, our search for the heart surgeon became more intense.  My aunt helped out by calling hospitals around the country.  Then lo and behold - she found a hospital that said "yes" and it was a hospital less than 30 minutes from her home!  Wolfson's Children's Hospital in Jacksonville, Florida.

We sent Lilly's records and I talked with the head cardiologist on the phone.  He was not afraid of Trisomy 18!  And he said they had helped other children with Trisomy 18.  Six days later we were in Florida and Lilly was checked into Wolfson's!

The doctors were very concerned about Lilly's low weight so they first worked to stabilize it and then get some ounces back on her.  The bottle was just not working as she was burning too many calories drinking little amounts.

So she had to get an NG feeding tube.  She did not like it!  (And can you blame her?  The feeding tube went through her nose, down her throat, and down into her stomach.)

having a bad nose AND bad hair day

The NG tube worked!  Lilly quickly began to feel better and start putting weight back on.  She had a bunch of ups and downs in the hospital, which you can read about in my September and October 2010 posts.  But still, she made steady improvement and was finally strong enough to have surgery to have a pulmonary artery band placed in her heart.  (She just wasn't strong enough for the complete heart repair surgery she needed.)

The PAB placement surgery went smoothly and the doctors were very pleased with how quickly Lilly recovered!

Not too long after the surgery, Lilly was discharged from the hospital and we were headed back to North Carolina, where she was to stay under the care of Dr. R, her local cardiologist.  He would monitor her and alert the Wolfson's doctors when he thought she was ready for the heart repair surgery.  Our job was to continue to try and get weight on her!

Two non-hospital good things from this month were: Lilly was not clenching her hands as hard anymore and ... she had learned to coo!

Getting ready to leave the hospital

Going back home to N.C.

"Sustain me, my God, according to your promise, and I will live; do not let my hopes be dashed." - Psalm 119:116

Day 2: Remembering Lilly - August 2010

This is my 2nd post in a 17 post series summarizing each of Lilly's 17 months of life.  To learn more details about Lilly's daily life, just click the appropriate month and year of my Blog Archive on the right side.

August 4, 2010 - September 3, 2010

Lilly wearing a dress from one of Tabby's dolls

Lilly turned one month old on August 4 and within days, we had cancelled hospice.  Yay!

We also started the search for a heart surgeon to repair her VSD.  (She had a large hole in her heart, and a 2nd smaller hole.)  Even though we live near several excellent hospitals, she was denied heart repair surgery because of her Trisomy 18.  (The team claimed it was "unethical" to repair her heart since she was going to die soon.)  We were not surprised though, as we had been warned it could be hard to find help.

We did however, find an excellent cardiologist that was local.  Dr. R was kind but seemed a bit hesitant in working with us at first.  But as Lilly continued to survive month after month, Dr. R became one of her biggest supporters and always greeted her with a big smile.  After examining her heart the first time, Dr. R prescribed Lasix for her.  She remained on that drug until after her second heart surgery.

I began adding in formula to the breastmilk Lilly was drinking to try and get more calories into her, as her weight was slowly dropping.  That stabilized her for a bit.

She was still tiny but alert.  Tabby and I said she was like having a living baby doll and we loved dressing her.  She wore preemie sizes for awhile, my only baby to ever do so.

Through our Now I Lay Me Down To Sleep photographer, we found out about Focus on the Family looking for pictures to use in a new booklet they were publishing called Gift of a Lifetime by Tammy Tate.  (The purpose of the booklet is to give information and resources to expectant parents that receive the news that their baby may not survive birth.)  We agreed that our photographer could submit some of the pictures he took of us with Lilly.  Amazingly a couple of our photos were selected!  It was really special to receive several of the booklets from Focus on the Family and see the photos and know that many many other people were seeing Lilly too!

Towards the end of the month, Lilly's weight began dropping again.  (A few ounces can make a big difference!)  I could tell she wasn't always feeling comfortable either.  Sometimes at night, she was only able to fall asleep laying on me.  We knew her heart needed help soon!

 

"My help comes from the Lord, who made heaven and earth." - Psalm 121:2