Hi Gang,
Rob here… Last time we updated we were waiting for Feli’s case to be presented to the Cardio Team. We have not been able to update as frequently as we would like, and not nearly as often as we did when Lucie was in the hospital… but last week, it felt like we needed to pull the emergency alarm and just ask for prayer even if we didn’t know exactly what to pray for. Felicity’s health was just getting worse and worse as we watched and waited for answers.
In the midst of this difficulty and pain, we felt thankful for all the support, love and encouragement we continuously received. We were continually reminded that even in times of not knowing the answers, we could bring our prayers to a God who hears us, and who does know. I am thankful that I can be honest. That I can wrestle with my God, be frustrated, question and still be loved abundantly and more than I will ever know and also know that God loves and cares for Felicity more than I ever could. I am thankful that because of His love for me and sending Jesus to die for my sins, I have hope, even during the bleakest of times. Even when I feel defeated, I have victory. Last week my wife and I prayed an honest prayer that there would be no middle ground or dragging on with Felicity’s state. That if she was going to get better, that she would start to show signs of improvement quickly. Or that if He was going to take Felicity home (or she was going to “transition” as we learned the insurance field calls it), that He would do it quickly so her pain would end, because in that scary time it was clear that she was in a lot of pain and discomfort. I’m thankful for the peace to be able to pray for His will to be done in that time even though this is not a position I wanted to be in at all.
Well, Amen and Amen because His JOY comes in the morning.
We know that all of our prayers (yours and ours) were answered, because we got quick answers, and even better, they were positive and hopeful answers!
Drea here… So now to share what we learned… Last Thursday morning, I got an update from the Medical team based off of the Cardio presentation. On Felicity’s echo that they had done on Tuesday, they found that her PDA had re-opened (they are pretty sure this happened on the previous Friday which could explain why her condition deteriorated so quickly). Like I’ve mentioned before, the PDA is an opening in the heart when babies are in utero but should close once they’re born... hers had almost closed entirely a couple weeks ago but it blew wide open again. It’s unclear how come that happened.
The PDA was taking blood that should have been flowing throughout Fafita’s body and redirecting it to her lungs. So that’s not good, but it’s really not good because the whole point of the medication they have been giving her via the IV (Milrinone) is to help her blood flow. So the PDA being open means it was stealing some of that blood and not really letting the medicine help her. So on Wednesday, they decided unanimously that they needed to close the PDA with a PDA Ligation. The Pediatric Cardio-Thoracic Surgeon happened to have an opening the next day (which if you’re tracking here, was the same day I was getting all of the updates), so they were able to quickly get her into surgery. The surgeon feels that this will help her significantly in the short term so that she can become more stable, get bigger, and have more options for the long term maintenance of the leaky valves. (There’s even the possibility that if she responds well to the PDA Ligation that she can come off of the IV medication (Milrinone) and we can make strides to have her come home to keep growing until more permanent interventions become necessary.) HOW AMAZING IS THAT!? After the surgery, the doctor called to let us know that everything went great, and that Felicity had a very large PDA, so he was very hopeful that we’d see improvement. Although the PDA Ligation doesn’t resolve the leaky valves, it improves the flow of blood throughout her body which was what was failing. Within a few hours of the surgery, she was extubated and back on Bubble CPAP, and within two days she graduated to High-Flow which is even less respiratory support.
A follow up Echo was performed, and so far they see a slight improvement, the bacteria mass from the initial infection is shrinking more and more, her valves are still leaky but no worse. Since the bacteria finally started showing signs of shrinking over the last few echos, they decided they did not need to add any more weeks of antibiotics, so two days ago, Felicity received her last dose of the six-week antibiotic treatment.
Her case will be presented to the Cardio Team again this week, and they will determine if they can possibly wean her off of the Milrinone. If they decide to do that then they will observe her closely to make sure her heart does not get overworked. If she continues to do well without the medication, then with an abundance of caution, they will start to have her do more and more on her own (like take more bottles, have even less respiratory support, etc.) We stand amazed at the power of prayer, the unanimous decision and quick action made by her medical team, and the clear difference we can see in our little girl today. I am not using this word lightly, it feels like nothing short of a miracle that she is still here with us and that she is doing so much better. I type this with tears of joy and thankfulness.
Our experience in the NICU this time around can probably be described as constant whiplash. With every bit of good news we get, there is always something else we are alerted about. This is no different. In the midst of celebrating Felicity’s improvement, we learned that she has developed ROP (Retinopathy of Prematurity) which is common in very premature babies. It means abnormal blood vessels have grown and spread throughout her retina. It can be treated with laser treatment, to hopefully prevent long term impacts to her vision. The Pediatric Ophthalmologist will be doing the laser treatment tonight, but will then have to follow up with Felicity in a few weeks to see if it actually helped. Stay tuned…
I also just wanted to share a few verses my friend encouraged me with in the midst of all of this:
“I remember the days of old; I meditate on all that you have done; I ponder the work of your hands. I stretch out my hands to you; my soul thirsts for you like a parched land. (Selah) Answer me quickly, O Lord! My spirit fails! Hide not your face from me, lest I be like those who go down to the pit. Let me hear in the morning of your steadfast love, for in you I trust. Make me know the way I should go, for to you I lift up my soul.”
We are in awe, and so thankful as we remember all He has done. We hope you see how much your love, prayers and support have helped. God heard our prayers, guys. Thank you for coming along side us throughout all of this. Keep ‘em coming.
With love,
Los Hicksons
Felicity on one of the very hard days. She was intubated and basically had something in each limb whether an IV or a monitor.
In the midst of this I made a quick SURPRISE visit to see my mom for her birthday. I was gone for less than 36 hours, it was during one of the tougher days for Felicity. Being around so much family in Florida helped so much.
Celebrating my Mom and my Abuelo’s birthdays.
So many loved ones came out to celebrate my Mom. This isn’t even half of the family!
Love you, Mom.
Meanwhile back in NYC, Rob coached a tournament and his team went undefeated!! It was agony to not be with Felicity each moment during this time but we both agreed that having so much going on that particular weekend was actually a blessing.
A few hours after her PDA Ligation, Feli was so alert and calm.
Extubated and even getting a little break from the CPAP.
The highlight of our week, which lifts us up no matter how hard the days have been, is getting to watch this little one LOVING her ballet class.
💗
Family visiting at the hospital
Lucie patting Fafita’s bottom to keep her calm and happy.
So proud to get to help!
Snuggles and bedtime stories
Felicity getting a break from her bed while she hangs out in a Rock n’ Play.
So happy to be on High-Flow and not need the CPAP get up anymore.
Enjoying a little bit of milk from a bottle. She can have 5mLs (that’s one teaspoon) from the bottle per day. See, I told you they were going to move slow and steady when it comes to challenging her.
Finally getting to snuggle again after more than a week of not getting to hold her. 💕