Home Sweet Home

Danielle came home from the hospital on Sunday evening.  It feels so good to have my baby home with a perfectly patched- up heart.  I keep finding myself getting emotional about doing the routine, normal, things we typically do in our every day.  Kiss n' ride at the preschool with Danielle bundled up along for the ride, enjoying a game of peek-a-boo at the changing table, sitting at the edge of my sons bed nursing the baby as I wait for him to drift to sleep.  I'm so thankful to have my baby, holding her little body in my arms, seeing her smiles, hearing her coos... I'm over the moon.  A prayer has been answered.  I'm so thankful to have my baby here with me.

We didn't get to this place without jumping a few hurdles, though.  We had a rude awakening on Friday night... literally.  It was around 1 A.M., and Danielle and I were asleep together in the hospital sleep chair.  I was resting like a mommy often does, with one eye open, on the defense, ready to pounce like a lioness.  It is hard to sleep soundly in the hospital environment.  Our room enveloped in a blue glow from the neighbors bili lights, the nurses knocking every few hours to take my baby for vitals, and the looming thought of the phlebotomist being there at sunrise to draw blood.  Danielle was perfectly peaceful and comfortable, however, fast asleep with a boob hanging out of her mouth.  I jumped out of bed and threw our blankets aside as Danielle suddenly unloaded what must have been the entire contents of her stomach all over herself, her mommy, and our makeshift bed.  I called the nurse in to help us get cleaned up.  She was so sweet to change our bed for us, but she should have brought two sets of linens because it was only two minutes after we laid down again that the whole process repeated itself.  Danielle was running a fever and was obviously miserable.

Saturday was supposed to be our day of discharge but Danielle was still feeling sick and wasn't eating much.  The doctors decided to keep her and planned to give her some fluids via IV drip that evening.  They did some additional blood work, took a urine sample and a nasal swab, to test for infection and known viruses.  She tested positive for RSV (a respiratory virus), which was a shock for the doctors and myself.  She wasn't showing symptoms that are common for the virus (coughing, rapid, or labored breathing).  They moved us to a private room where we were considered to be in "isolation."  The Doctors and nurses were required to wear a gown and mask when they entered our room.  Drama Queen didn't need to get infected with RSV just to get a private room... geesh.  RSV acts like the common cold for most of us but can be dangerous for infants and cardiac patients.  Fortunately, Danielle hasn't yet shown symptoms that are concerning.  The doctors discharged us on Sunday after she had gained her usual appetite back.

I'm pretty sure the throwing up was due to a G.I. bug, or the flu, because Danielle seems to have passed it on to her brother who was throwing up last night.  He's doing much better today and I'm still feeling thankful for the comforts of home... even though I've been thrust back in to the mommy role, which in our home, includes scrubbing barf out of the carpet.  Home, sweet home.

    

One Step Closer to Home

We were moved back to the regular pediatrics floor today, back to the very same room we started in last Wednesday.  It felt strangely like a homecoming.  We received a warm welcome from the nursing staff that we had become so friendly with throughout the week.  Our girl has a smile that captures anyone she meets and I've been told that she has become pretty popular around here.  Apparently she caused quite a buzz when the staff learned she was joining them again so soon.  She had a group of 5 nurses who crowded around her bedside to visit with her as we settled her in.  She's been referred to as "champion," "rock star," and "tough lil' cookie."  She is a tough little cookie, I'm so proud of her.  She's looking so good today.  She's eating like she does at home and she's resting comfortably.  They are weaning her off the heavier pain meds and I'm hoping that she'll be a bit more alert tomorrow.  I'm missing my special girl.

    
Mommy has earned some popularity too.  The staff here has gone bananas over this anatomical heart that I knit for Danielle in anticipation of her surgery.  I've had a few staff members here pop in just to get a look at it.  I'm really wishing now that I had taken the time to finish it completely, making it anatomically correct to include the superior vena cava, inferior vena cava, and pulmonary veins.  I think I will finish it and give it to the surgical staff that repaired Danielle's heart.

You can find the pattern here: http://www.knitty.com/ISSUEwinter08/PATTheart.php, if you're interested in making one for yourself.  I followed the pattern, except I used worsted weight yarn to make it a little larger, picked up stitches to add the detail to the aorta, and wrapped the aortic valve around the pulmonary valve a little differently that shown to make it more anatomically correct.

The Cardiac Corner

It's intense in there.  There is so much medical equipment.  The beeping from the monitors start to sound rhythmic after a while, and then you don't hear them anymore because your brain tells you it's information you don't need after the 100th time. The nurses here are so much different than they are on the regular pediatrics floor.  The pediatric nurses are the friendliest people you'll meet.  They use a soft soothing voice when they talk to parents, and they're not afraid to break out the baby talk when they address your child.  I like them.  The nurses in the Cardiac corner of the Pediatric Intensive Care Unit are very business like.  They buzz around like bees, everything seems so hurried, I think they must get a caffeine drip before their shift.  Their kids are just coming out of surgery and they have a lot that they need to manage for their little patients.  It seems that they are very skilled in keeping a mental catalog of every function of the body at any given time and they are quick to react to any need of their patient.  I like them too.

Danielle came out of surgery around 7pm last night.  The surgeon said the surgery went well.  He said the hole in her heart was big, and that there was a 2nd hole in her heart that we had never seen during her echo-cardiograms, an atrial septal defect.  It was a small hole and he used a few sutures to close it.  Before her surgery, the doctor's had prepared me for her to be sedated through the night while on the ventilator.  They said that she would probably stay on the ventilator through the next day.  Danielle was breathing almost entirely on her own only a few hours after surgery!  I expected that when I saw her after her surgery she would be sleeping peacefully, instead, she's kicking all around and seems agitated by everything she's hooked to.  All day I've been questioning the doctors decision to take her off the vent so quickly.  There's another patient in the 2nd bed of the Cardiac Corner who came out of surgery this morning.  The baby is still sedated.  He looks so peaceful resting and I can't help but feel like Danielle deserved to have that time to rest and relax after such an invasive surgery as well.  The doctors keep re-assuring me that she's doing great and that coming off the vent so early was a huge success for her.  She seems to be much more comfortable as of this afternoon.  Apparently managing pain can be like walking on a balance beam.  They want to make her comfortable, but they don't want to slow her respiratory rate and risk having to re-intubate her.  She took about 10cc's of breast milk this afternoon.  It's such a small amount but it made me feel good that mommy was able to do something (ANYTHING) to help her.  Let's get some "liquid gold" (I love that the pediatrics people call it that) in to that girl, she could really use those antibodies after being on the heart and lung machine.  Her blood seems to be clotting well enough, and she hasn't required any blood transfusions, which is great.  I think I heard that they were going to try to move her out of the PICU on to the regular pediatrics floor tonight but that seems so quick.  We'll see what happens. 

Thank you all for your prayers and well wishes!

      

Holding Her Tight

Dear God please watch over my sweet baby girl.  I'm holding her tight tonight.  I'm going to miss holding her like this, knowing that she's sleeping contently, feeling safe and warm in the arms of her mother.  I have faith that she'll be in the arms of God, but my heart will be aching for her.  My heart will be aching to feel her soft skin against mine, to see her bright smile, to hear her giggles and coos.  Please God make my baby well.  Please.  Stand beside me and give me the strength I will need, hold me up when I'm feeling weak, settle my soul when the anxiety is eating away at me.  Please God make my baby well. 

Our family is facing more than I ever thought we could bear but shortly after Danielle was born I realized my faith had been renewed.  I'm hearing the voice of God louder than I ever had before.  He has so many faces and I'm seeing him all around us.  I know he's here with Danielle as she battles to overcome these obstacles that she's been given so early in her life.

When I learned that Danielle had Down Syndrome I remember thinking "how can I be the mother of this child?"  The only thought that I am left with going in to this surgery is "I could never be without her." 

  

The NEWER New Plan

I've typed this up once and am having to edit it now because there's been yet ANOTHER change of plans.  Danielle is having her surgery on Monday.  We're starting her tomorrow morning on a drug called Topamax to treat the infantile spasms.  This is the least aggressive of three options that we were given.  The treatment option that the neurologist was pushing for is called ACTH (a steroid treatment), but she was only considering her organ of expertise.  Danielle's cardiologist weighed in and advised that ACTH, because of the side effect of high blood pressure, would be to aggressive for her considering her heart defect and would inhibit healing after her surgery.  The two options that we are left with are a drug called Vigabatrin or Topamax.  Vigabatrin has more serious side effects but is more effective.  Topamax shouldn't cause any serious side effects and it has been in use to treat infantile spasms in the U.S. for a long time.  We requested the opinion of a second neurologist who advised to start with Topamax, and that was consistent with what Steven and I where leaning towards.  They will start Danielle on a small dose and increase it as her body adjusts to the medication.  We'll watch her progress and get another EEG while Danielle is in recovery after the surgery.  If the medicine is working we'll be able to wean her off after about 12-16 weeks.  She should be seizure free after treatment.  If Topamax doesn't work, we'll switch to Vigabitrin, and the last resort for us would be ACTH, after her heart has been repaired.  I am praying that the Topamax works.  This is a long road for some children and if the spasms aren't controlled, it could cause her cognitive delay.  I'm trying not to fear the worst, instead using my energy to pray and hope for the best.  PLEASE keep her in your prayers!

Danielle had a good day today.  We haven't started the treatment yet, but she only had one episode, which is much improved from yesterday.  She is her smiley social self.  She seems to be enjoying her stay at the hospital.  She meets so many new friends.  Every time there's a shift change and she sees a new face at her bedside she gets giddy.  I even got her to chuckle a bit today, when we made up a new game involving taking turns spitting out a pacifier ;-).

Steven has been my replacement for the past few days and I have to say I'm pretty impressed.  He's an awesome Mr. Mom.  He's gotten more laundry done than I would have given the same amount of time, he took Justin for a Dr. appt today with great success, and he's keeping these kids busy and happy.  They look like little ragga-muffins, with their dirty faces and un-kept hairstyles, but hey, that's what happens when you're having fun.  We're switching roles tonight so I can get some snuggle time with the kids and possibly watch the Greys Anatomy/Private Practice that I tried to watch at the hospital last night without much success.



Mom's making me do PT even while in the hospital... I secretely enjoy it though ;-).

I came home tonight to find these Get Well cards on our doorstep.  I was so emotional as I stood at our kitchen counter reading these.  My favorites said "I love your face when you smile," and "I hope the surgery doesn't hurt, U R so cute."  They where all sooo sweet.  Thank you Brownie Troop 276!

 

   

Infantile Spasms

Danielle was admitted to Inova Fairfax Hospital yesterday morning for something that is completely unrelated to her heart.  She started having movements that I immediately recognized as Infantile Spasms (a seizure disorder.)  I knew that’s what I was seeing but hoped that the spasms where benign.   It was around 3pm yesterday that she was hooked up to an EEG (like an EKG, except this test measures brain activity.)  A technician glued 21 electrodes to hear little head.   He said before he started that the process wasn’t going to be painful but that she would likely cry because it would be “annoying” for her.  That guy is a liar.  She screamed for 30 minutes while he scraped awful smelling glue on to her head with a q-tip, firmly pressed and electrode on to her head, and then hurryingly glued gauze over the electrode.  21 times she had to endure this process that I know was painful for her (a mother knows her child’s cries; she’s not lost her voice from screaming because she was annoyed.)  The process was made even more grueling by a lack of professionalism.  The leads from the EEG where all tangled in a nest of wire, so after each electrode was placed, the tech had to search for the next electrode in this mess and untangle it before it could be placed.  I REALLY don’t like that guy.  If I didn’t have more self control, I might pin him down and give him a taste of his own medicine.  I know it’s not fair to be angry with him, but it did seem to help to have someone to pin my frustration on.  Poor guy has a tough job… probably doesn’t make many friends around here.   

Danielle had a few episodes while being monitored by the EEG.  The neurologist called me from home after reviewing the report and said it is infantile spasms.  I feared this news and hoped it wasn’t true, but I knew that’s what I was seeing, I just knew.  My poor baby didn’t do anything to deserve this.   I wish I could go back to two weeks ago when my biggest concern was the timing of her surgery to repair her heart.  The good news is that we caught it early.  Forgive me for saying, but Danielle is blessed to have a very insistent mommy.  One of the residents here says I'm a great diagnostician and asked if I had a medical background.  Haha, no, but mommas intuition is unparalleled.  Children with Down syndrome typically respond much better to treatment for Infantile Spasms, which is also a bit comforting to know.   I’m waiting for her to come out of her MRI now.  They want to make sure there is nothing going on (other than a chromosomal abnormality) that could be causing these seizures.  I should be talking to the neurologist today about medications that are used to treat this and I’m hoping to get some more input from her Cardiologist too… I’ll insist on it, actually ;-).  I think the plan for now is to get a handle on this before we make any plans for open heart surgery.  This totally sucks but we’re taking it one step at a time.

Aside from the EEG tech who ran out of my room, accidentally leaving some of his equipment behind, after his encounter with a momma bear, everyone has been really great.  Many of the staff members here recognized Danielle’s name when we were admitted (she has been on their calendar three times now,) and they are making sure to take good care of our special girl.

The messages of thoughts and prayers keep coming, and we are so grateful for the support.  THANK YOU!            

Still waiting... patiently?

Danielle's surgery has been postponed... again!  She woke up from a nap yesterday in the late afternoon with green "goop" flowing from her eye.  When I saw it my heart immediately sank to my stomach.  I took her to her pediatrician this morning who diagnosed her with pink eye and said she would be fine for surgery.  Yay!  Pink eye!  I never thought I would be so happy that my child had pink eye.  I made a call to the surgeons assistant to let her know what was going on with Danielle.  When she replied "oh no" my heart sank yet again.  She wasn't sure if the surgeons would want to move forward, pink eye is a virus, after all.  I was informed that the surgeons were due to be out of surgery around 2pm today.  That meant that according to a doctors watch, I wouldn't hear back until the VERY end of the day.  The angst that I've been feeling from all of this "hurry up and wait" has been torturous.  I finally heard back and got the news that I had been dreading all day.  The surgeon doesn't want to risk it.  I SO badly want to be on the other side of this.  I've been prepared for this emotionally and physically... twice!  When Danielle's surgery was postponed the first time, on Monday, I was disappointed.  I was worried for our family but prayed hard for the baby who needed surgery on that day more than Danielle did.  I reminded myself that everything happens for a reason, but still I worried.  I worried because I had put my sister on a plane to be here with my children during the surgery.  I was worried because I had done my best to mentally prepare my children for the changes that come with having their parents back and forth to the hospital.  I worried because I wasn't sure I could handle the nervous anticipation that I've been feeling any longer (yes I was worried about being worried!)  But yes, everything happens for a reason, right?  Danielle may have very well had this virus stewing on Monday and she's just now showing symptoms.  She needs to be healthy and strong going in to this. 

I need to be healthy and strong too. The overwhelming support that I've received from so many has helped me to be just that.  Family, friends, neighbors, and even complete strangers have rallied around us.  It's a wonderful reminder that people are good.  It's been inspiring, some of the acts of kindness that I've been blessed to experience in the past few days.  Theresa is a new friend of mine.  She's the assistant of the surgeon.  When she heard that the blood we donated couldn't be used for Danielle due to the delay she offered to donate her blood.  She happens to be O- as well, which is random because not many of us are.  This selfless act brought me to tears.  She's a stranger, really.  Yes, we had talked every day this week, laughed, cried, joked, but we've only met once, briefly during my first meeting with the surgeons.  Thinking that she would take time out of her day and let someone inflict pain on her for the benefit of a stranger is so touching.  My neighbors have made an impression on me as well.  Even though we are transients a military family, they have accepted and included us.  They have organized an effort to bring meals for our family.  They are doing the cooking for me through the end of the month!!  I'm not sure if they realize how much this means to me.  I thought that when we moved here that I would miss the camaraderie that you find on military bases... boy was I wrong.  I have lived a lot of places in countless neighborhoods and I have to say that THIS is one of the best.  Even the handyman I spoke to last week surprised me when I told him that things would be too busy for him to come out this week because of Danielle's surgery.  He asked about Danielle and stopped to say a prayer for her.  He made sure to move things around so he could get my shower fixed over the weekend too! Awesome!  I've been receiving messages of encouragement and well wishes from so many.  We are so blessed to have so many wonderful people in our lives.  Thank you to all that have us in their prayers and who are wishing us well.  The amount of love and support that we have around us is heart-warming to say the least.

Danielle's surgery has been scheduled for Thursday, Feb. 16.  Third time's a charm ;-).  I'll be holding her tight until then.  Here are some pics that were taken with the help of my new protege, my sister, Sarah.