Give A Brother Some Warning

Yesterday our day was spent at Children's Hospital checking our youngest daughter's progress and scheduling her palate repair surgery.  We received lots of positive information regarding her surgery and recovery, and it sounds as though it may actually go smoother than we'd originally planned.  This was obviously excellent to hear.  

We had several appointments in the morning, which took us to about 10am.  Afterwards we had nothing until 2:45.  Driving in Dallas traffic is sort of like the fun you would have if you shoved a spoon directly into your eye, so I decided to remain for the 2:45 appointment rather than return home and then back again for the appointment.  So we had some time to kill. 

And, really, time to kill is what you want when you have a 5 year old and 7 month old for companions.

Children's is a great place.  They put so much effort into making their hospital a place that is welcoming, and even fun, for their patients.  The ceilings are covered with various themes, some rooms have butterflies hanging down, another has lights that look like stars- complete with shooting stars- all across the room.  They have trains that run through rooms, popcorn being popped in various nooks and crannies, art rooms, and the big winner for us- a children's library.  We spent hours in there.

Unfortunately, one thing they can not do is help who comes through their doors.   One of my favorite sites all day was a pasty white gangly looking thug-esque beauty of a man.  He was walking like a fool with his pants on the ground wearing this shirt:

Isn't that brilliant?  You may be thinking that I'm being cruel, that some teenager suffering a sickness should not be picked on.  Let me put your fears to rest, this man was a grown adult who has procreated and had a child with him.  Feel better?  

I thought about yelling out, "COPS!  COPS!"  right by him just to see what the brother would do with some warning.  

The day was a little rough.  My oldest hung in there as best she could, but her sassy pants took over every now and then.  My baby slept for a total of 30 minutes all day.  

My daughter took to trying to be funny, and she's gotten into a bad habit of repeating things she's heard and trying them out.  These things are usually inappropriate and make me want to crawl in a hole and die.  

Yesterdays little nugget occurred when I dropped a toy on the way into an exam room .  A nurse helped me pick it up and Nora yelled out, "My mom's a loser!".  The nurse looked at me like I was obviously a solid parent.  I've never heard Nora say that so I obviously scolded her and assured she would never say it again.  

She looked at me teary and said, "You and Aunt Julia said it to each other." 

Mother of the year!  Holla!

After much waiting, it was finally time for our 2:45 appointment, which was a hearing test.  When I checked in the nurse chirped happily, "Oh, I was wondering when you'd get here!  I saw that you were here this morning for appointments, they should have sent you right up.  Often times we try to squeeze families with appointments that far apart in!  Otherwise it makes for a long day!  They must have forgotten to mention that".  This is when I jumped over the desk and pulled her hair.  

Afterwards, we had one more appointment to see the ENT.  It was at 3pm.  So at 4:30 were were called in and we saw a DR for a total of 6 minutes.  He told me the things I already know and quickly left the room.  Totally worth the wait!

This got us into the car in time to join the Dallas after work traffic.  I was so relieved to have my children strapped into the car that I did not care.   

And that was my day.  But honestly, it was full of good news and we all made it.  So as far as a day goes in Children's Hospital, we were of the luckiest people there yesterday and I know it.  

I would like to end this with a love letter to my GPS though:

Dear Tom Tom,

You couldn't find your ass with both hands and a map.

Fondly,

Amanda

Twenty Two Pounds

22 lbs.

Since our daughter was born I have been dreading 22lbs.  

When she was born I was determined to make breastfeeding work.  I spent two and a half days in the hospital with lactaction consultants, and mostly nurses, trying to make it happen.  Finally, I noticed a nurse put a surgical glove on and put her index finger in Evelyn's mouth.  It seemed odd, yes, but you have to remember I was post partum which meant a myriad of crazy things were already going on in that hospital room.  A part of me thought something of it, but I pushed it down.  She was born totally fine, we'd already assured that through various tests and a pediatrician check up.  

What I did not know was that the nurse had come to a conclusion when she put her gloved finger in my newborn's mouth, and when she left she called a pediatrician to come back the next day and confirm.

I really hope people understand how crucial nurses are to our medical care.  We take such care to find the perfect doctor, but in the end it's the nurses that you never had a chance to research, who end up doing the care and often times diagnosing.   

Back to Evelyn's story.  The nurse knew it was not the time to tell me what she had figured out, in case she was wrong, but also because it was in the middle of the night.  It was not an emergency and nothing would be harmed by waiting to the morning, and it saved my sanity.  My husband was home caring for our 5 year old because I had wanted her world to stay as normal as possible, given we had dropped this baby bomb shell into her little life.  So I would have been alone, tired and uneducated in what I needed to know about Evie's special needs.  

The next morning, after another failed round of breastfeeding, I was starting to get very concerned about Evelyn's lack of food intake and her weight loss.  It wasn't dramatic, but it mattered to me.  I was to go home that day and I had a baby that was not taking food.  I had voices from breastfeeding advocates in my head telling me not to introduce the bottle and to push through. I was thankful when another pediatrician came so I could tell her how little Evie had taken in since she was born.   Basically a syringe of colustrum, and that was all.  My nurse was still on duty and she came in with the DR.  I'm grateful for that because she was prepared for my little melt down, and another nurse would not have had my baby on her mind for a few hours.  That mattered to me. 

The doctor explained that she had been called back in and my entire body clenched up and the room seemed to become very small.  

When my older daughter, Nora, was three she was diagnosed with Asthma.  Her breathing was so labored that we were sent from the doctor's office to the children's unit in the attached hospital for meds and around the clock breathing treatments.  We were lucky, it was a very scary situation, but Nora had a treatable issue.  Looking around the children's unit was frightening.  It is a very unnatural thing to see children hooked up to machines and looking too tired to play.  I felt so blessed and lucky that my child was not going to be doing this repeatedly or for a long time.  We left the hospital with an ongoing treatment plan that should help us avoid ever having to return to the hospital.  That is such a blessing.  Such a gift to have a medically care free life with your child.

My mind shot to this with the doctor's words and I was very scared.  She went on to tell me that Evelyn had an abnormality of her soft palate, also known as a cleft palate.  The reason she could not nurse was because she could not create a latch due to the abnormality of her palate.  She also had no stopper between her throat and nose, as a person does normally, so every time she spit up it came out both her nose and mouth.  It also meant that she would need surgery to repair the cleft when she is around 12 months or 22lbs.  

Now, truth be told, while this is far from what you want for your child, it is fixable.  She needs special feeding ,will likely suffer from ear infections from fluids flowing into her Eustachian tubes, 98% born with this issue will require tubes, and after her cleft is repaired she will need speech therapy.  There may be major orthodontic care in her future and a possible second surgery.  


The speech issues will be the next hurtle.  During their first year a child is learning how to make sounds, even though they aren't speaking words.  There are certain sounds Evelyn will not be able to accomplish making until her cleft is repaired, therefore she will have to relearn how to speak in some ways.  It's unknown what speech issues she will have, but she is very similar to her sister, so she will have LOTS of practice talking.  Sadly, the 'duh' sound required to say "daddy" is one she will not be able to say until her cleft repair.  I've decided to try not to dwell on this, and to just look forward to seeing what she comes up with to call her daddy.  Again, that issue will not be forever.

Now, I am calm about all of these issues.  OK, I'm calmish. Learning to feed her and assuring we were getting her enough food was extremely stressful.  She has horrible reflux, which is just bad luck.  But it means, for Evelyn, that she is spitting up a ton through her nose.  Have you ever laughed and had milk come out your nose?  No one would want that to happen 10 or 11 times a day. It hurts. I was terrified to lay her down, worrying about her drowning with spit up coming out of her mouth and nose simultaneously.  I was afraid she wouldn't be able to cry and let me know she was struggling.  So we bought special bottles, numbers of burp cloths, did loads of laundry and my husband sought out a video monitor that would allow us to keep an eye on her and see her when she was, in a rare moment, not in our arms. 

But the truth is this; it is not a heart defect.  It is not cancer.  It is not juvenile diabetes.  Her organs all work.  Those are all lifelong concerns which come with an unknown and difficult path.  This issue has no impact on her developmentally, aside from her speech.  We are so, so lucky. I didn't understand it in that moment.  Then, I cried and cried.  But I know it well now.

But one thing remains hovering around me.  The thing that makes my blood run cold when I remember,in moments when I had just been happily holding her and watching her sleep.  22lbs.  Anesthesia.  A doctor I barely know cutting into a tiny little 22lb body.  What if he stayed up too late the night before reading and reacts a nanosecond to late?  What if the nurse has a cold and my daughter winds up with an infection?  How will they prop her tiny pink mouth open?  And her recovery is horrible.  Days in the hospital.  Arm restraints. She may throw up blood. I've been told I will need to feed her a high caloric diet in the weeks before to prepare for the weight loss.  A weight loss at only 22lbs.

The cold stink of a clean hospital.  

The fact that my mom died from complications of a surgery.

I hate 22lbs.

Operation Smile: Providing safe cleft lip and palate surgeries for children all over the world and building a long-term sustainable solution.

Perfection