Baby Harper's incredible progress
Baby Harper will need 3 open heart surgeries before the age of 3. Thankfully, the odds of her surviving into childhood and adulthood are good with today’s advancements in this field. However, as of writing this, she is still in the hospital, and is fighting to get stronger and to the point of being able to come home.
As a company, ViM is committed to supporting those in need, we understand that the medical bills, travel expenses, time in the hospital, 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. You can bless this family by simply clicking on the link below, a portion of the proceeds will go to support Baby Harper’s journey.
Every time I sit down to write the only thing I could think of was, “Brain. Fried. Harper. Good.” By the way, please read that using a caveman voice because that is the most accurate way to describe my ‘tired speak.’ I’m still tired. And my brain is forever fried. Extra crispy. We have been in the hospital for 203 days. Harper. GOOD. She has been making slow, steady progress. We moved out of the ICU and down the hall into the Intermediate Care Unit! On Friday, the 27th we met with GI and we started feeds! Whaattttttt. Harper hasn’t had any food in her belly since July 19th. We are going so slow though (which is good). She started at 1ml an hour and we are up to 6 ml an hour today. Slow and steady. We don’t ask anymore about “the when’s”. We don’t know when we will be out of the IMU and on the regular floor. We don’t know when we will go home. We do know it will be a while. We have a long way to go. For now we continue to pray for her continued progress and thank God for every single day. We pray for more normal baby things. Pray for no more sedation medication. Pray that we can continue to advance her feeds to reach goal without complication. Pray that she can come off oxygen support. Above all please thank Him. Give thanks that our little warrior has made small steps in a big way.
Friday night through Sunday was rough but we thought it was some “normal surgery stuff”. Late Sunday night Harper’s blood oxygen saturation starting dropping into dangerous levels. A routine X-ray showed her left lung had partially collapsed. She battled all night. Fighting recurring partial lung collapses on both sides. Her left lung would come back but then her right lung partially collapsed. Then back to a partial left collapse. We couldn’t get them both open at the same time. Her breathing was fast and labored. Her saturations getting lower and lower. More pain meds. More tears for Momma.
Monday morning, the team thought it be best for Harper to get a CT scan of her heart. The post surgery Echocardiogram showed some obstruction in the Glenn but a CT would give a definitive report. A CT scan means sedation. It is so incredibly defeating to hear any of this. More sedation? A problem with the Glenn? What the heck? This poor baby has been through enough. The cardiac anesthesiologist was consulted and said in order to do the CT scan safely Harper needs to be sedated and intubated. I had a few “choice words” rumbling around but I swallowed those. The tears, however, could not swallowed. So…I was ushered out of the room so Harper could be intubated…again. We prayed and prayed and begged and begged that there was no obstruction. Obstruction means back to the operating room. More tears.
Ben and I were called back to Harper’s room once they finished intubating her but by the time we arrived her left lung completely collapsed. Providers and nurses and respiratory therapists all buzzed around Harper. It was 3 hours before the dust settled. They had to fully sedate and medically paralyze her. One of the hardest things I think we have done so far is looking at our baby as she lay there completely out of it. Paralyzed and sedated. We cried. We just couldn’t help it. We thought the paralytic would only be used for one day but Harper remained paralyzed until Friday.
This is going to take a long time to heal. I don’t need to remind any of you that we are coming up on 6 months in the hospital already. It has been half of a year. To hear “this is going to take a while” really sucked. I don’t know how else to say it…but…more tears. Thank Him, though. The stent should keep us out of the operating room.
You guys have complimented Ben and I for how we handle all of this. You say we are so strong and we try really hard to keep that up. Let me be honest with you, though, Wednesday night I drove home crying angry, ugly tears. I had a serious talking to with God. It was pretty messy but He really needed to know how I felt. You know the word that kept popping up in my head? Trust. More ripping and tearing of my faith. Someone else called it a “faith workout” like when you workout your muscles rip and tear only to come back stronger. That’s what this is. And just like a workout there is an incredible amount of hurt and soreness but you have to trust that it will go away.
Friday morning her left lung collapsed again. One of her IVs went bad. Tears. But trust. They decided to take her off the paralytic at 12:30 and at 12:45 she opened her eyes. Happy tears.
We are able to wean her oxygen and ventilator settings. We got rid of two heart medications. Her blood pressures are within goal. She didn’t need extra doses of pain medication. SHE WAS AWAKE. We both got to hold her for the first time since Thursday, September 5th. Holding is the best therapy for all of us. Happy tears.
On Sunday, we said BYE-BYE to morphine. Today, we said ADIOS to pacing wires. Hopefully, soon we get to say SEE YA NEVER to the Nitric Oxide machine. It’s really encouraging to see Harper get rid of stuff. We are so thankful for her progress. Ben and Harper spent Sunday together and she was so happy to see her Daddy. She was smiling and smiling some more! We don’t ask anymore when we will be out of the ICU or when we will go home. We will when we do. Her lungs are going to need time. So we wait and enjoy the smiles behind the CPAP mask because they are still so cute. We continue to ask for prayers for Harper. Pray that God continues to breathe life into her lungs and strengthen them. That she may come off one last sedative that we are currently using it to regulate her sleep cycles to deal with ICU delirium. Pray for her steady progress, even if it be slow. Small steps are OK.