Day 316 in the hospital. Harper has been sent home two different times to only go back to the hospital within 48 hours or less.
Well, here she is again. The doctors say it is time for Harper to go home. She will still need oxygen. That was not the original plan, but her lungs have been pushed as far as they will go for now. The damage to her lungs has been caused by long term and multiple insertions of a breathing tube. Please pray for continued healing and strengthening of sweet baby's lungs.
Her digestive issues still remain a mystery. She is being feed through her G-tube with an additional extension to go all the way to her intestine. This is helping her to grow and strengthen, but of course the doctors will have to address this issue down the road.
There were other issues along the way with finding just the right medications to help Harper breathe efficiently. We are at a good place now, so home bound she is.
Ben and Brit are optimistically cautious due to previous experiences. They are in the process now of having the air ducts in the house cleaned, the carpets and floors cleaned and sanitized, as well has general dust and irritants removed. Any illness big or small can be devastating for Harper.
We are so proud of our warrior princess who continues to fight and overcome.
Part time in-home care ($)
Digestive issues evaluated and solved ($$)
Lungs to heal (prayer and time)
Save up for second half of the Open-Heart Surgeries ($$$$$)
We truly appreciate all the generosity you have shown to Harper and her family. Without you, this event would be much harder to overcome.
May God Bless you.
Imagine you are a young, hard-working couple with a healthy child expecting your second when in an instant everything changes. While in the womb, your new baby girl is diagnosed with a Congenital Heart Defect. She only has three chambers of her heart, not the four it takes for the life giving organ to work properly. This is Ben and Brittany's story. They are two hard-working teachers and coaches who have dedicated their lives to educating other people's children. They are a a loving family with a beautiful toddler daughter named Payden Rose.
Baby Sweet Heart Harper will need 3 open heart surgeries before the age of 3. The odds of her surviving into childhood and adulthood are VERY good with today's advancements in the field of CHD, but this comes at a price. Fortunately Ben and Brittany have health insurance, but the deductibles and out-of-pocket costs can be devastating. We are asking for help. The medical bills, the travel expenses to be close to their hospitalized daughter, and loss of work time and pay add up quickly. The average cost of one surgery, out-of-pocket is approximately $30,000 for the first year of life.
3/24 - As you can see, baby Harper is here and she is a week old. Harper is truly a little warrior. She has been through a lot in her first week as we are getting ready for her first surgery. In the picture currently posted, Harper is 2 days old. The rag over her face is to 1 shield her eyes from lights in the NICU and 2 allows Harper to smell her mother's scent since the nurses had Brittany hold the rag to her chest first.
3/28 Journal entry by Brittany
The stent has been placed and Harper is in recovery.
This morning Harper was prepped and wheeled down the hall to undergo the catheterization of her heart and to place her stent. It took 5 people to get her down the hall with all of her bells and whistles, but she made it. Ben and I both checked the time that she left the room, 11:00 am. The excruciating countdown to get our little girl back had begun. Finally, at 1:50 pm, Dr. Dimas walked into the waiting room with a smile on her face. Harper's procedure was finished and went perfectly.
Now, she recovers. We have big goals for the next few days. Harper will need to get back to full feedings. We hope and pray this stent holds strong. We need to see her breathing without assistance from the breathing tube. They will try her on a CPAP machine before they remove the breathing tube. We still expect to stay in the Cardiovascular ICU for another 1-2 weeks before moving to the Intermediate Care Unit.
Harper's path is twisted and bumpy and sometimes dark and scary, but, she has proved she is going to keep moving forward and we are with her every step of the way.
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