Believe In Miracles

As another season is coming to a close, I have so much to share about the past several months of our lives.  The first and most exciting thing to report is that we celebrated Hudson’s 1^st birthday at the end of June with the birthday theme Love You To The Moon And Back.  It was such an incredible joyous celebration not just about a 1^st birthday, but also of life and miracles.  I can’t even describe how special this moment was for both my husband and myself.  Before Hudson was born I prayed for this moment.  I wondered if we would ever see that day, and to have an opportunity to gather with family and friends and watch our sweet baby boy laughing, playing, and smashing his birthday cake was more than I could have ever hoped for.  Thank you Lord for performing wonders that cannot be fathomed and miracles that cannot be counted (Job 5:9).  It is truly amazing to see how far Hudson has come in the past year.

What a difference a year makes!

Hudson also had his first real vacation at the beach in July.  He loves playing in the sand and water, and was extremely fascinated with the sand crabs and fish that we saw.  He was not however a fan of the drive down (not that I can blame him).  We had a fantastic time and can’t wait to go back.

We have had the longest stretch of time between cardiologist visits, which is a great thing.  We will be going back this Thursday for a check-up, but it has been 4 months since our last appointment.  Hudson will still need a 3^rd open-heart surgery and tentatively that is being planned for sometime after his 2^nd birthday as long as things continue the way that they have been.  We are scheduled for a minor, non-heart related procedure this October with hopefully just an overnight hospital stay.  Otherwise things really could not be going much better.  Hudson has also rocked all of his developmental milestones.  We were warned that he could potentially have serious delays in both physical and mental developmental milestones due to his heart defect, but Hudson has exceeded everyone’s expectations.  He began walking at 10 months and now cannot be stopped :) He is so smart and just blows me away daily.  I’m so proud of him and proud that I was given the opportunity to be his mother.  Hudson continues to inspire me and show me how precious life is.

Hudson you are loved to the moon and back!

Weeping May Endure for a Night, but Joy Comes in the Morning

I have questioned whether or not to write this post for sometime now.  When I started this blog one of the things that was most important to me was authenticity.  I never wanted to act like that because of my faith everything about this journey was going to always end up picture perfect.  The reality is from February 5, 2013 until now I have praised, questioned, cried, and been angry at God for allowing our family to go through this.  For several months now I have experienced depression and anxiety about Hudson’s heart.  Just to preface this discussion, Hudson is doing amazingly well.  He is crawling and I’m pretty sure he will be walking very soon.  He is the most happy, sweet-spirited baby I have ever seen.  Quite honestly he couldn’t be doing any better.  It might not make any sense to people why I would now have feelings of depression when my child has made it through some of the toughest moments and is now thriving.  The truth is it doesn’t always make sense to me either.  I wasn’t sure if I should write about this because it is personal and one of those things that people just don’t talk about, but why not be real instead of just trying to act like everything is always great.  I’m not looking for anyone’s sympathy, but instead trying to say that if you have ever felt like this it’s okay and you are not alone.  Also friends of people that have had children with health problems or have lost loved ones need to understand that this journey changes you forever.  I have watched my baby and countless other children go through struggles that no one should ever have to go through, but especially not children.  I wish I could erase the images in my mind, but I can’t.  I have watched my baby do so well, but I have also seen others struggle and not make it.  I have witnessed friends mourn the loss of their precious angels. 

I have the kind of personality where I get extremely emotionally involved with people.  When other families have gone through these experiences, I imagine how I would feel if it had been me because the reality is it could have just as easily been us.  To my friends and others that know people in similar situations I would just ask that you cut people some slack.  Everyone handles situations differently, but I don’t think you will ever meet someone who has had a child with a severe health problem say that they are not changed forever.  I think I was running on adrenaline for a long time and now that things have finally calmed down I have actually been able to stop and reflect on the past months.  One of the things that has given me a true sense of peace is knowing that our struggles and time on Earth is just a blink of the eye compared to our eternal life in Heaven.  I am thankful that one day Hudson’s heart will be whole and the memories of watching my precious baby struggle will forever be erased.  I am grateful that God sent his son to be crucified so that we can spend eternity with our Heavenly Father in a place where pain and suffering are no more.  After having my own child, I think I actually understand this sacrifice even more so than I ever did before.  It is horrible to watch your child suffer, but I am thankful that God loved us enough to send Jesus to suffer and die a horrific death on Earth so that we can truly live.

Hudson's 7 month photo shoot (my big boy is now 9 months old!)

Every Good & Perfect Gift

Happy Valentine’s Day!  

Hudson had a cardiologist appointment today and we received some wonderful news.  His chylothorax has finally resolved and is completely gone.  One of the reasons for the lack of blog posts lately is because the chylothorax has basically remained unchanged since November.  This is the first time since September that he has not had any residual chylothorax.  Thank you Lord for answered prayers!  We have been so blessed to be able to stay out of the hospital now for the longest amount of time in Hudson’s life.  We spent Hudson’s first Thanksgiving and Christmas with family, and just enjoyed all of the special moments with our precious baby boy. 

The past few months have had quite a few ups and downs.  Everything with Hudson has been great.  He is now 7 months old and completely on the move.  He loves walking (while holding Mommy or Daddy’s hands), playing with his furry brother and sister, and giving the sweetest baby loves I have ever seen.  Every moment with him is an incredible gift. 

Even though we have not been in the hospital lately, we still developed some close friendships with people we met while we were there.  Three CHD families we met said goodbye to their precious angels as they entered into the presence of our Lord and Savior over the past several months.  Babies W, J, and C will always hold a special place in my heart.  I cannot imagine how incredibly difficult it must be to lose a child.  These babies are true heroes and their lives inspired so many.

No one is guaranteed another day and God has just been reminding me to savor every moment.  I know that in a single heartbeat everything can change, but I am determined to treasure every moment.  Every smile, laugh, and kiss from Hudson shows me how precious life is. 

“Every good and perfect gift comes from God above” – James 1:17

First Christmas, playing with the dogs, and first snow!

Hudson loved meeting Santa Claus

Love, Sweet Love

It has been awhile since I have blogged because the status of Hudson's complication from his 2nd open heart surgery seemed to change almost daily.  Since September 23rd (Glenn surgery date), Hudson has had a heart cath, a pleurodesis, 5 chest tubes, and at least 5 hospitalizations with over 30 days spent in the hospital.  We had a cardiologist appointment this past Thursday and will most likely continue the weekly appointments until we are sure that his chylothorax does not start reaccumulating.  Fortunately Dr. Romp (cardiologist) said on Thursday that he thought things looked pretty good and he was hopeful that maybe the small pockets of effusion which still remain will gradually just be reabsorbed into the body over time instead of getting larger.  We are still not completely over this hurdle, but hopefully the worst is behind us.  We are hoping that we can stay out of the hospital for awhile and that Hudson can celebrate Thanksgiving as his first holiday at home :)  Hudson is now 4 months old and cuter than ever.  He is laughing, cooing, rolling over, and getting close to sitting up by himself.  Thank you for continuing to pray for healing for Hudson.  There are also many others at Children's who need your prayers so please keep them in your thoughts as well.

I also wanted to tell you about a really neat thing that happened while we were in the hospital last week.  Regions Bank sponsored what is called a "Cheeriodicals Day" at Children's Hospital, where as a part of their community service, they gave every child in the hospital (360) a big green box of "cheer" tailored to boys or girls and filled with age appropriate gifts.  Also MoveDaddy.com delivered all the boxes to the hospital.  I can tell you that my face lit up when Hudson got his box full of goodies and I know it did for many other patients as well.  People don't always hear about good things that happen in the news, but for so many sick children this was such a special treat!  Big thank you to Regions Bank for making Hudson's day!

Just a few of the goodies from Hudson's Cheeriodical Box!

Meeting cousins for the 1st time, FaceTime for Great Grandaddy's 91st birthday, Sweet Smiles

Love Letter to my Son

Hudson,

My beautiful 4-month old precious baby I am so glad to have you back home again.  The past couple of months have been so hard and it hurts my heart every time that you stare at me in the hospital when they are about to do something to you.  There have been so many times where I just want to grab you and run out of there forever.  I know it is all necessary and every measure that is taken is to give you the most incredible life that children born 32 years ago with HLHS wouldn’t have even had the chance to know.  Every day I thank God that this incredible 3-step surgical intervention was invented so that I can spend my life loving you.  I hope that you never remember any of this, but when you get older I pray that you look back at what you have gone through with pride and awe for being braver and stronger than most people are ever called to be. 

One of my favorite times together is when I am rocking you to sleep for the night.  A quiet moment with just the two of us, I feel a sense of peace and gratitude for getting the chance to know you and be inspired by you.  You are the best part of me:  my love, my heart, my world.  I consider you my greatest accomplishment and the most incredible person I have ever known.  You are a warrior and a fighter.  Please don’t mistake that you are defined by your heart, because there is so much more to you than that.  You have such a sweet spirit, always smiling when you are feeling good.  When I look into your eyes it is like you are staring into the very depths of my soul.  I love the way that you sometimes get shy and put your hands up in front of your mouth to hide when you are smiling at people.  From day 1 you have had this inquisitive personality that surprised everyone who came in contact with you.  Those cute eyebrows would furrow and they would say that you were taking note of everything that was going on.  I’m not surprised one bit because you are so smart.  I am so proud of you and in many ways consider it ironic that such a strong boy could be born to such a weak mother.  I learn something from you every day, but maybe the most important lesson I have learned is that of courage and enjoying every moment that the Lord has blessed us with.

Your daddy and I love you more than you will ever know, but you are loved even more by the one that created you.  He knew everything about you before you were even born and made you completely unique from everyone else (Jeremiah 1:5).  From the very beginning I have prayed that God would use your story to touch others, but maybe you have touched me the most.  Your beautiful heart has forever changed mine. 

All of my love today and forever,

Mommy

Our Little Monkey Goes Back to the Cath Lab

After we were discharged from the hospital following Hudson’s Glenn surgery, he started acting unusual.  By Tuesday we knew something was wrong and we brought him back to the hospital and were readmitted on Wednesday October 2^nd, just 4 days after we had gone home.  We have been in the hospital ever since because they discovered that Hudson had a type of pleural effusion known as a chylothorax, which can be a complication from pediatric cardiac surgeries.  The medical team placed a chest tube on Wednesday and then started treating the chylothorax by changing the diet.  Hudson was transitioned from fortified breastmilk to a special low-fat formula.  He had an unusual adverse reaction to that formula and so he was switched to another brand.  They had hoped this would resolve the chylothorax, but unfortunately it has not.  The physicians have decided to perform a heart cath today to check for clots as well as look at the pressures in the heart and pulmonary arteries.  I’m sorry I have not updated the blog sooner, but this has been an incredibly stressful 2 weeks with lots of questions and few answers.  Please pray for Hudson today during his heart cath (he is the 3^rd case so it may be around 11-12am) as well as that the chylothorax will resolve.

Can we go home Mom?

Sweet sock monkey baby

Post-Op Day 7

One week ago today Hudson had his 2^nd open-heart surgery.  The Glenn surgery went extremely well and we were discharged on Saturday, September 28^th just 5 days after his surgery.  On the day of surgery we arrived at the hospital around 6 am and they took Hudson back into the surgical suite around 8 am.  The surgery ended up starting several hours later than originally planned because there were some issues with the cross-typing of the blood products that would be needed for transfusions during surgery.  Once the surgery started it lasted several hours, and Jamey and I were finally able to go back to see Hudson around 3:30 pm.  When we got in the CVICU room, they were trying to wean him off of the ventilator and luckily he got off within probably an hour after we went back to his room.  During the extubation process they have to drastically decrease the level of sedation as well as the use of certain pain medications that can cause respiratory depression.  It’s hard to see Hudson on the ventilator because I know he is uncomfortable and there is just nothing I can do about it.  His blood pressure was running high during this time, which is expected after surgery, but can also signal pain and discomfort.  They started some additional antihypertensive meds that did not really seem to make a big difference so they gave him morphine which did help decrease his blood pressure some.  Hudson’s favorite song is You Are My Sunshine, which I sing to him all the time at home.  I wanted to comfort him and let him know that we were with him so I started singing to him and his blood pressure started dropping immediately.  I’m sure his nurse probably got so tired of me singing that song to him over and over again, especially considering that I am not a great singer to begin with.  Honestly I could have continued singing to him for hours, but after he was extubated he was so exhausted that he went to sleep for several hours.  We stayed in the CVICU through Wednesday and then went to the CCU, a step-down unit, through Saturday.

This surgery was so much better than the Norwood.  During our month-long hospital stay after the Norwood, all of the nurses told me the Glenn would be so different.  Even though I believed them, I still thought that there was nothing easy about a major open-heart surgery.  Luckily in many ways they were right.  Only 1 day on the ventilator, less than a 1 week hospital stay, and a closed chest coming out of surgery made this experience as uneventful as I guess open-heart surgery can be.  Another miracle that happened in the past week is that Hudson was finally able to come off oxygen for the first time in his life.

Last Tuesday was Hudson’s 3-month birthday.  He has brought so much joy to our lives over the past 3 months and it’s hard to remember life before him.  We are so grateful to Hudson’s pediatric cardiothoracic surgeon, Dr. Dabal, for performing another successful surgery.  Before Dr. Dabal was recruited to UAB/Children’s Hospital, they did not even perform the Norwood procedure here.  Babies that needed this life-sustaining surgery were sent to other pediatric cardiac centers across the country.  Dr. Dabal was recruited to start performing the Norwood as well as other heart surgeries at Children’s.  God has blessed Hudson's entire medical team with such incredible skill and talent.  Since Hudson has been born I’ve often wondered how do you thank someone for saving your baby’s life.  Nothing I can ever say will be enough, but we are so thankful to Dr. Dabal, Dr. Romp, Dr. Alten and countless others for giving us the opportunity to not only celebrate Hudson’s 3-month birthday, but also a lifetime of birthdays.  

One of the verses in Psalm 30 has been on my mind over the week.  Psalm 30:5 says weeping may stay for the night, but joy comes in the morning.  Inevitably it is easier to see the joy that comes when things go the way that you want them to, but even when they do not, God is still in control.  For some joy may come sooner than for others, but either way we have a promise of joy that will eventually come.  Even in the most difficult moments of life, God never abandons us.

Sponge bath after coming home from the hospital

Glad to be home

The Glenn

Since the heart cath procedure Hudson has been doing well.  Unfortunately the balloon dilation of the pulmonary arteries did not make enough of a change to get Hudson off oxygen, but we are hopeful that he will after this next surgery.  Originally the 2^nd heart surgery (Glenn) was going to be scheduled for the middle of October.  However we have had a couple of situations where Hudson’s oxygen sats were dropping and we were hospitalized for several days.  Since this seemed to be happening more frequently, the doctors decided it was best to move his surgery up.  Hudson will be having his Glenn surgery tomorrow, September 23^rd.  The surgery should last anywhere from 4-6 hours and we will probably be in the hospital for 1-2 weeks if things go well. 

When I was pregnant, I had been introduced to another mom with a HLHS baby.  Her child was having his Glenn towards the end of my pregnancy, and I remember thinking how it must feel to watch your child go through another major surgery so soon.  I knew I would dread it and I have to say that I do.  Even though this surgery is not typically as critical as the 1^st surgery (Norwood), it is still major open heart surgery.  Obviously I am scared and wish I could go through it for him or just take the whole experience away.  All those memories of the ups and downs of the 1^st surgery come flooding back, and it’s hard to believe we have to do it all over again.

Hudson is so blessed to have had incredible medical care throughout his life.  His physicians not only possess a wealth of knowledge, but also truly stand beside our family as we have gone through this process.  During our last doctor's appointment prior to his Glen, our pediatrician Dr. Brian Dudgeon asked if he could pray with us.  It is awesome to have people of such great character caring for our baby.  Please pray for Hudson tomorrow during his surgery (we are the 1^st case so it should start around 7-8) as well as during his recovery and his medical team.  We covet your prayers and believe that prayer is powerful.  I’ve said it before, but it is incredible to know that there are so many people praying for Hudson.

The Lord is near to those who have a broken heart – Psalm 34:18