Off the O's and Outside

This past weekend was beautiful.  Luckily, Adeline came off of the oxygen which allowed us to spend much of our time outdoors.  I am not sure it was her favorite place to be but the rest of us truly enjoyed it.  Ever since Adeline has been sick, her sensory issues have been on the rise.  It is amazing how she just turned into a different kid, the kid we had over a year ago.  She can't stand the sound of cars and, especially, lawn mowers.  Every time we take her outside she crawls up our leg growling until we hold her.  Then she says in her meek voice, "Lawn mower not get me."   She doesn't enjoy her out door toys either.  This has decreased her independence tremendously - I am back to holding her every second we are outside.  She has also demonstrated increased sensory issues in the house.  All of the sudden she hates sitting on the stools at the island and requests to be place in her highchair (she still eats in one for the support of a 90-90-90 degree position which is hard for her to maintain when eating due to her low tone).  She screams, "Lila not fall," when she sees Lila squirming around on the stool.  I don't know what do about it since she has been fine with all of the above activities for quite some time.  It seems like one day she woke up with a lung infection and and super intense sensory issues at the same time.  It is very FRUSTRATING!


Back to the more positive side of this weekend. . . time outdoor with friends, downtime in the house as a family unit, and cupcakes galore.  

The Never Ending Lung Infection

This has been a tough month for Adeline.  Earlier this week when I was putting her to bed, she threw a huge fit because I wouldn't put the pulse ox on her.  She doesn't typically sleep with it and I just assumed she was trying to buy time.  Fed up, I gave in and wouldn't you know it. . . she was 88!  That's well below a saturation of 95.  I was dumbfounded.  Did she know she needed oxygen?  Was she trying to tell me?  I don't know, but, in either case, the oxgen was pulled out and she has been hooked up ever since.

I took her to her pulmonologist on Wednesday and it looks like her lung infection was never resolved.  Her x-ray was clearly worse.  I asked why she is going back and forth with the oxygen when she has been off of it for over a year.  He believes Adeline has low reserve.  We knew this when she was younger as it always took her longer to bounce back from any illness.  Now that she is bigger, she is typically able to fight an illness.  This lung infection is unique and demonstrates her lower reserve.  She has not only been hit by the infection but is also fighting the virus that caused the croup and a double ear infection.  When she initially got the lung infection, she had been fighting a cold on and off for a month.  She hasn't been extremely sick this winter (until now) but hasn't been exceptionally well either.  Eventually, her reserve was depleted and she succumbed to this infection.  Maybe this is why April is ALWAYS our worst month.  Maybe, fighting viruses all winter leaves Miss Adeline with nothing left to fight with come the end of the winter.   And for this family, the end of the winter is always when we are slammed with viruses.

Sayings around the House

Adeline. . .

Me:  What makes milk?

A:  Cows

Me:  What do bees make?

A:  Honey


Me:  What makes eggs?


A:  Easter Bunny Rabbit



As I was putting her sock on to keep her Pulse Ox probe in place Adeline said, "That's my pulse sock."  (meaning the sock)


When Dr.  Chidekel was listening to her lungs from the back. . . "Dr. Chidekel, rub my back."




Lila. . .


Me:  Look Lila, that is Daddy's Daddy.


L:  No, giggle giggle


Me:  That is Daddy's Mommy.


L:  No way! giggle giggle




When going to the bathroom and experiencing some diarrhea. . .

L:  Mommy, come here.  I need hugs!


M:  No, Lila.  You can go poop by yourself.


L:  But I scared of my poop Mommy.

Officially Easter Morning

This year we got to do a double Easter. The Easter Bunny has always come to Durham on Saturday morning and the kids haven't questioned it. This year, it was necessary to explain that the Bunny visits Durham on Saturday and doesn't get to the Philadelphia region until Sunday. We find the Saturday visit convenient because we leave Durham on Saturday evening in order to miss the holiday traffic. Thus, we are able to have "Easter" with the Banks family on Saturday.

We traveled home Saturday afternoon this year. We weren't able to visit the Duke gardens or get all three girls in their dresses. We were more focused on getting everyone in their own beds, especially Adeline. After a long car ride, we arrived at 9:30 p.m. and were thrilled to be out of the car. The girls were very good but after being the same space for 8 hours, even the best behavior becomes annoying.

Sunday morning rolled around and we came down stairs to look the blossoms that emerged while were away. In doing so, we found a few more treats from the Easter Bunny. He left the little girls bikes (Adeline's was a giraffe stationary bike) and Savannah a beanbag. They were thrilled to see that the Easter Bunny made a double visit this year.

We have decided that Lila Grace is speed demon on her new bike. She has to get used to the brakes because her old bike didn't have any - a dangerous feature for a girl who pedals as fast as she can.


After getting everyone dressed, we made it to church. There wasn't a sunday school for the girls so they got to sit with us in a packed service. They were pretty good but I was ready to leave by the end of it.


We raced home because I had a special date with Lila. We are trying to have find special one on one time with the girls and Lila's time was a trip to see an Ernie/Elmo show live. We had a great time. She was all smiles and waves for her Ernie. She blew him plenty of kisses too. Her only complaint was that he didn't come up to her seat so that she could give him a hug. She seemed to get over that fact quickly and sat like such a big girl and enjoyed the show. It was a treat to spend time with Miss Grace. She is really growing into a kind and sweet girl!

Easter Morning

Easter morning without The Belle was disappointing but still fun for the other kids. Savannah and Lila were very cute when they came down to look at their baskets. Adeline emerged last minute during the egg hunt which allowed her the opportunity to hunt for eggs. After one egg, she was done and ready to go back in.

Easter in the Hospital - Again

Adeline started her Easter off in the ER of the University of North Carolina (much to Daddy's chagrin). Adeline was pretty fussy during our stay in North Carolina but I figured it was just her sensory system being overloaded by the heat, lots of outdoor play, and a new envrinment.  I was wrong.  The night before Easter we put her down to bed and had no inclination that she was sick.  I checked on her at midnight and she was fine.  Alex checked on her an hour or so later and noticed that she was restless.  He was sharing a room with her and observed her begin to cry and work harder and harder to breath.  Eventually, he woke me up.  I was pretty alarmed with what I saw.  Adeline was retracting between her ribs, something I haven't seen in years, and making a terrible noise during inspiration.  We tried to hook her up to the pulse ox but discovered we forgot the probe for her toe.  I knew right then, we were headed to the ER.

Upon arrival, they whisked us back to acute care, bypassing triage.  I told them she needed oxygen and a pulse ox reading ASAP.  A nurse mentioned she had croup.  I thought to myself, "What does she know.  She doesn't know her history and I am sure that changes things."  Well, I was wrong.  Preemie or not, croup is croup.  You bark like a dog and sound  like a train when breathing.  The doctor was somewhat alarmed because her airway was so tight.  He asked again and again if she had something lodged in her throat.  Confidently, I told him there was no chance my little girl swallowed a toy because she is orally adverse to such things.  At that point, he ordered an inhaled vasocontrictor which was magical.  It constricted those blood vessels which took the airway swelling down.   The noise stopped and Adeline could finally get a full breath of air.  They also put her on some hefty 72 hour steroid which saw us through the rest of our trip.  Adeline had to wait around for a few more hours to rule out a relapse and once she proved herself, she was discharged at 6:00 a.m.  Happy Easter to her!

I let Alex and Adeline sleep in while I got the other two girls dressed and ready for the big day.  It wasn't exactly how we had it planned but I soon changed my expectations and was thankful that Adeline wasn't admitted.  This family has been in the hospital EVERY April since the twins were born.  It just isn't our month.

Gearing up for the Bunny

While at the Banks house in North Carolina, the kids geared up for some good old fashion egg dyeing.  They were so anxious they could barely contain themselves.  We got everyone around the table, no room for any more children, and instructed that there will be no banging of eggs or grabbing of colors.  Adeline proceeded to  say, "I bang my eggs on table."  Once we got that under control, there was very little mess and only one spill.  Pretty good considering we were working with seven kids 7 and under.

I should mention that the eggs were magical this year.  The kids found their names on them and some even  had pretty designs.  Lila wanted everyone to see her surprised eyes.

When the eggs were all out, Adeline was pretty upset.

We left our baskets by the door and off to bed the children went. Little did we know we would be in the ER hours later with Miss Adeline.