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.

3 Months Today

13 weeks.  It feels like these weeks have passed by so fast, but something happened the other day at our neighborhood playground that gave me a different perspective.  I ran in to Danielle's NICU nurse, Debbie, the favorite I had talked about in Danielle's birth story.  It was SO wonderful to see her.  I wasn't sure if I recognized her at first but I could hear her talking to her friend and I was sure that she was the patient woman who had sat and chatted with me while Danielle was in the NICU, offering kind words, knowledgeable advice and a listening ear.  She was happy to see us and she held her tiny patient while she caught up on our family news.  After seeing her I realized that it seemed like a lifetime ago that I was sitting with her in the NICU and it made me see that we have since come so far.  I met Debbie the day Danielle was born, although I don't remember much about that first meeting.  I had been wheeled in to the NICU for a brief visit with Danielle while on my way to a recovery room.  I was a shell of myself.  Empty inside.  In complete shock.  The emptiness was followed shortly after by feelings of  helplessness and fear.  Sadness resided in a place deeper inside me than I even knew existed.  That deep dark whole has since been filled with Love and happiness.  The feeling of helplessness faded with knowledge.  The fear, I don't know if it will ever go away completely.  I worry about the unknown future for all of my children, I think that just comes with parenthood, but I have more hope and excitement than I do fear so I think I'm doing alright.  I am so incredibly thankful for this child that I have been blessed with.  I feel so lucky to be her mother.

Although my heart has been healed, Danielle's may still need repair.  She hasn't yet been symptomatic of her heart defect, but after her most recent echo cardiogram her cardiologist suggested that may soon change.  We are preparing for open heart surgery sometime between Jan. and March.  Open heart surgery is scary, and although I was holding on to the hope that the hole in her heart would close without surgical intervention, I'm optimistic (I guess that's my personality and I'm just now in my life realizing that).  The surgery is a common one, with a very high success rate and we are fortunate enough to live in the DC area where we can have our choice of excellent hospitals who staff talented pediatric surgeons.

Feeding has been an ongoing struggle for us.  Danielle was given bottles while in the NICU.  I tried to get her on the breast after she was off the oxygen but she was reluctant.  I've tried and tried since to get her on the breast with the help from many more lactation consultants than I would like to know.  Modesty has left the building by the time you get to your third child.  More people have seen my boobs in the past 13 weeks than you could imagine.  They've been seen swollen, they've been seen deflated, they've been seen wearing nipple shields, they've been seen being sucked down the barrel of the breast pump, they've been seen squirting milk in to my babies face as she wiggled and fussed hoping I would just give her the bottle already.  "Wheres the payoff?"  I got to a point of frustration, but I continued pumping milk for her.  I came to a feeling of disappointment, but kept pumping.   I began considering defeat, but pumped on.  "Is this ever going to happen for us?"  I finally returned the borrowed breast pump to the hospital last week.  Sianara.  Goodbye and good riddens.  Don't call me.  Do you sense some hostility here?  I had spent too many hours sitting with this machine, I toted it around with me for months... I left it behind and didn't look back.  "Did you think I had given up on nursing?"  NO I didn't give up.  I've always had a stubborn tenacious character.  After almost three months of trying, Danielle and I have FINALLY established a healthy nursing relationship.  It wasn't my tenacity though that had fueled my effort to nurse this baby, it was my conviction.  I dreamed of nursing her since the day we knew we were pregnant.  I look down at her when I'm holding her, with her chubby little face smooched in to her warm mommy drunk from the milk that is made just for her, and I am so thankful to have these moments of closeness.  I wish we could stay like this forever.

Danielle is starting to show us more of her character.  She is very smiley and social.  I think she is going to be a funny little thing.  Maybe a bit of a stinker too, but very sweet natured.  She already seems to be a daddy's girl (how does this happen!?).  He comes home from work and sits with her on the couch while I get the other kids in to bed.  He holds her out in front of him and she smiles and coos telling daddy all about her day.  We love our Dani girl so much!  Happy 3 mos. baby!   

     

Smiles, smiles... Oh Joy!

Another momma I know recently posted something on her Facebook page that I related to and found humorous.  "If the inside of my purse is any indication of the way I live my life then I'm screwed."  Well the inside of my purse (and my van for that matter) ARE an indication of my current lifestyle.  Papers scattered about, coupons I'll never remember to use when I get to the register, missing socks, one shoe of a pair, yesterdays coffee cup... I would go on but I might embarass myself.  My life feels so chaotic right now.  Pediatric and cardiology appointments, early intervention, nursing hurdles, research, research, research, etc, etc, on top of mothering a three and four year old, trying not to be a horrible wife, and household obligations.  Sometimes it feels like a heavier load than I can carry... but she smiles.  When she smiles all of that weight is lifted off my shoulders.  I forget all about all of my current concerns.  I'm late for an appoitment... so what.  The house is a mess... so what.  I haven't had a chance to feed myself yet today... so what!  I'm looking in to her eyes and she's looking at me with a smile on her face.  There's a smile on her face and a smile in my heart ( and on my face too of course.)  My other children are smiling back at her too.  "She's smiling at me mommy!  She's smiling at me!"  My heart is so swollen it might burst!  I wish I could bottle this feeling... I'd make billions selling invincibility.

Give Thanks

I want to write about things I'm Thankful for during the month of November.  The plan was to start on the first, but I'm a bit delayed.  Late has been my style lately.  I have never been the punctual type and now that I have three kids in tow, I'm tardy AND disheveled.  Anywho... Today I want to give thanks for the many wonderful people who are in our lives.  I've always been appreciative of my family and friends, they are an amazing bunch, but I've recently come to realize how much I really need them.  I haven't had much trauma in my life.  I may have had some brief moments where I felt like I needed to lean on someone but it was only recently, after receiving Danielle's diagnosis that I felt like I needed someone to hold me up.  Thankfully, it didn't take long for me to find my legs again, and I'm walking taller than I ever had before, but it's times like these when you realize how important family is.  I received so many wonderful messages in response to Danielle's birth story.  The love and support is just overwhelming, it means so much to me.  Even families whom I have never even met are offering their support and I'm in awe of their acceptance, kindness, and warmest regards.  Some of you had said that you thought Danielle's birth story was beautifully written.  Thank you for the compliment, but it is these words that you had written for me that are truly beautiful.  I am going to live up to the standards of this amazing woman that you all suggest that I am.

I was going to post all of your messages here, but there are so many.  I am however having every one of them printed along with her birth story and you better believe that I'll reflect back on them when I need some uplifting.  Here are some snippets of the inspiring messages that I've received.  

"She is a blessing from God and what is amazing is that he picked you to be the mother of this child. That speaks volumes. He knows that you can be strong and can support his child."


"Your daughter is so beautiful!"


"Tiffany, I love you and look up to you sooo much. You are such an amazing mom! God has blessed Danielle by giving her to you!"


"Your story is beautiful and inspiring to us all. Tiffany you have grown into a beautiful woman and mother. I am so happy life has given you all the JOYS in your life. You have left impressions on my life and thankful to be acquainted to such a beautiful woman."


"Blessings and Love to the Alfonso family!! I love u Tiff ur the most amazing woman and mother I know!! You continue to inspire me!! God has blessed you in everything u do!! Xoxo"


"I feel so blessed and honored to know you and your family."


"Blessings to you and your family! Danielle is truly a beautiful baby girl!!"


"Tiffany, I admire you for your strength, you are truly amazing.. may the most high continue to bless you and your beautiful family ♥ you are truly blessed and so are your children to have you as their mother!"


"Thank you for sharing such a beautiful and inspiring story, Tiff. You and Steve are the best parents. You're both so patient and caring. Baby Danielle is a perfect addition to your wonderful family. I know you will be the best advocate for all her needs. Love you guys! Can't wait to meet my sweet little niece."


"Congratulations on your beautiful baby girl!!!!!"


"Tiffany- your strength and positive outlook are inspiring. Your story was so beautifully written, I was in tears reading it. I am do happy to hear Danielle is doing so well now. You are a wonderful Mama!"


"Tiffany, my sweet sweet daughter, I'm so proud of you and Danielle and I love you both so much."


"Your daughter is gorgeous"


"Tiff, you are AMAZING! Such an inspiration to all mommies! Love u! Danielle is a beautiful gift from God."


 "Thank you for sharing the story....you told such a wonderful story about this new wonderful little addition to the family. She is absolutely precious! It was wonderful to see the kids with their new little sister. I love you guys!"


"Congratulations! Your baby girl is adorable =)"

"Congratulations on the birth of your beautiful baby girl! Danielle is so blessed to be part of such a loving family!"   "Thank you for sharing such a wonderful story with me. You had me smiling and tearing up as I read your story this morning. God made the right choice in blessing you Danielle, he knows that you have so much love and patience to give her what she will need in life."

"Thanks for your message it was very up building. Makes you really see that God is good in so many ways."

"I am very touched by Danielle’s story.  I truly know how blessed Danielle is to be part of your family."  "I am so proud to know you"

"I look forward to watching her grow & Flourish into a beautiful young lady!!! She is so beautiful in every way!"

Oh ya, and a blog post just wouldn't be any fun without pictures, so here's a baby fix for ya'll.  This is Danielle in her owl hat (made with love by mommy.)