Wednesday, February 5, 2014

Harper's Story

It was all planned: Harper was to be born on January 21st by a scheduled c-section.  But little Sweet Pea had other plans.  My birthday was January 14th and that night my water broke (slowly).  I really didn't know my water broke until the morning when I was getting ready for work.  I got in the shower, did my makeup and my hair and well, the leaking just wouldn't stop.  So after a call to my OB, off Matt and I were to the hospital at 6:45am.  Here I am right before leaving for the hospital. :)
My water just broke!

At 9:13am Miss Harper Carmen Emery was born weighing in at 7 lbs 9 ozs and at 19 inches long.  She was pink and beautiful.  From the OR we went to the recovery room where we held Miss Harper and started the bonding experience.  Since she came early Matt and I were alone; no family was there.  So pics were taken by each other, see below:
Matt is ready for the OR.

Getting ready for the c-section.




But after about two hours, one of the nurses came up to me and Harper and asked to finish their assessment.  They checked her oxygen saturation levels and found them to be in the 60% range which is not good.  They should be in the 80-90%.  Then I heard the words that no parent wants to hear when then just had a baby, "GET THE DOCTOR STAT!" by a nurse.  Then we heard words from the nurse of a heart murmur and low levels, etc.  Next thing I knew they were rushing Harper to another room where Matt went with her.  They come back and told us that Harper has a heart condition and they need to take her to Rady's Children's Hospital to be seen by the pediatric cardiologist.  Mind you I was at Scripps Memorial Hospital.  So they took my newborn by ambulance to another hospital for, at this moment, some unknown problem with her heart.  Matt left Scripps and headed to Rady's to be with Harper.  To add more drama to the situation, I had a very bad reaction to the anathesia.  My blood pressure was too low, I was shaking and dry heaving for the next 12 hours.  Fun times.

So after being taken to Rady's, Harper was diagnosed with Pulmonary Atresia.  We had no idea what that meant.  We now know all too much about it.  Pulmonary Atresia affects 1 in 10,000 babies.  The basic explanation is that her pulmonary valve was barely open, so she was not getting enough oxygen rich blood through her system.  Not good, but the pediatric surgeons at Rady's thought they could fix it. 

So the next day she had heart surgery where they used a catheter through the umbilical cord to blow up a balloon to expand her pulmonary valve.  We were all hoping that it would do the trick, but it was not enough. She had another surgery the next day where they again used a catheter to go through her femoral artery in her groin to insert a tiny stent in her PDA valve (in another area of her heart). 

Poor Harper is a tough little cookie!  After the second surgery she started doing better each day.  Her improvement was amazing to watch.  It seemed like each day the doctors and nurses removed one more wire or tube from Harper.  They removed the ventilator and she was able to breath on her own and get enough oxygen.  Matt spent almost every minute with Harper since she left Scripps.  I was discharged on January 19th and joined Matt at Rady's.  Luckily the hospital had a Ronald McDonald house so we were able to stay across the street from where Harper was which was surreal for me since I have volunteered in the past with this nonprofit but instead of dishing out food I was the one receiving the hot meal.  Either me or Matt stayed with her every night.  She got better and better as the days went on and thankfully she came home on the 24th, after 10 days in the Cardiac ICU.





So what now?  Well, there is still a lot of uncertainty.  Her cardiologist thinks she will make a full recovery, but there are still a lot of unknowns.  The side effect of her condition is that her right ventricle is under developed.  The key thing her cardiologist will be tracking in the coming months and years is the size of her right ventricle.  Harper may have to have another heart procedure in the future.  We just don't know.  She will not be an Olympic athlete but otherwise she should live a normal life.  She has been through so much already that we know she is one strong little lady.  Bringing her home was the best day ever.  She has put on over a pound since birth and is a great baby.  We love her more than words could describe. 

We even had our newborn photo session and although she pooped twice and peed once all over the photographers blankets, the pictures turned out great! 




So we are adjusting to having Harper home and getting to know what our new normal is right now.  Riley has done great with baby Harper.  She loves her and attempts to help out which is super cute. 


I also want to say a huge THANK YOU to our friends and family that knew what was going on and were there for both Matt and I.  The texts and phone calls meant so much and to those that visited me in the hospital meant the world to me.  When things like this happen it really shows you who will be there for you and how truly blessed we are to have such a great support group.  Words cannot express how much we love you. 


3 comments:

  1. Katie, I am so sorry to hear what happened, but so glad that she is doing better! My oldest daughter has Corrective Transposition of the Great Vessels and is dual-chamber paced for the rest of her life. She has had open heart surgery twice and will have a battery change and possibly a procedure on her pulmonary artery this summer. I am here if you ever need to vent about it, Donna has my number...it always helped me to talk with my cardiac-family from Egleston. Your family is beautiful and I wish you all the best! Hope she continues to do well with her condition! Love, your old friend Becky

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    1. Thanks Becky! Yes, it helps to have a good network of people who understand what you are going through so I really appreciate it. It's so scary and for me, I wasn't able to be there for the first few days since I was recovering from the c section. Luckily my husband was there for her as even if I could have been I'm not sure I would have been as strong as he was to see her hooked up to so many wires and tubes to keep her alive. We take it day by day and have high hopes that no more surgeries are needed. Miss you and I wish the best for your girl too!

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  2. This post brought tears to my eyes. Being a mother of two little girls myself, I can only imagine what you must have gone through in those most horrible days of your life. We all hope and pray that worst is over, and Harper will completely recover in the days and months to come. Good luck to you, Matt and Riley and get well soon little Harper. I can't wait to meet her one day and have play date with all 4 of the girls. Much love, Mahvish

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