Everyone … Thank you so much for bumping my prayer thread! Please continue with your prayers. Daniel Joseph looks perfect and normal, but he has a critical condition.
After saying that, I truly believe … no matter what medical advances we have available to us (and there are many!) … the greatest miracles we personally have witnessed through this trial, and will in the future witness (Lord willing), are due to God’s love for us and His blessings – with Him honoring all the prayer being offered on Daniel’s behalf!
I don’t know why this has happened (maybe to strengthen our faith, or to make us more compassionate?). I don’t know.
But no matter what, I can say with assurance that I know Who his creator is, and He can re-create Daniel’s imperfect little heart. And I will praise Him no matter what!
As mentioned earlier, Danny Joe has a stent in the PDA. It was necessary for the PDA to remain open in order for him to have enough oxygen, but it’s not really a good thing other than that.
He is termed heart shunt dependent and we have to be concerned about even seemingly minor symptoms, because something even as simple as arching of his back, lack of appetite, or a slight cough or low fever, could signify something life threatening.
He has a cardiology appointment once a week. A visiting nurse also comes on Sundays to check his weight and other vitals. His oxygen is excellent, mostly hanging around 94% ORA, but at his cardiology visit last week, it was 100% on room air! I thought to myself, “Maybe the Lord has healed him!” When we got in the car my DIL said the same thing out loud, so I told her we were in agreement :).
That said, he seemed to have too many breaths per minute according to the doctor, so she increased his Lasix from twice, to now 3 times daily. I hope I didn’t offend her, but I had to ask if she was confident that he wasn’t getting too much, and she said she was confident.
The specific healing our precious baby needs:
He has the stent as mentioned. Again, not good, but it’s necessary because his pulmonary artery is too narrow to sustain him. So it needs to expand in order to allow the stent to be removed and the PDA to close.
Another thing, my son told me they did an echo 2 weeks ago and (not sure, but I believe he said) the atrial wall is too thick, so they’re watching that, hoping it will thin out over time. (It might be something else that is too thick, but I believe he said atrial).
He also has a hole in his heart as mentioned in one of my earlier posts.
The bottom line is, if the pulmonary artery expands, they’ll go in and remove the stent later through angioplasty and allow the PDA to close as it would normally. If the pulmonary artery doesn’t expand, he will need to have open heart surgery in about 6 months.
I also request prayers for Daniel’s appetite. It was very good until after his Lasix was increased last Friday. He was eagerly taking 3-1/2 to 4 ounces every 2 hours, and now he’s taking maybe 1-1/2 to 2 ounces. I’m concerned about dehydration because of the extra Lasix (plus, lack of appetite is one of those symptoms we’re to watch for). I don’t know why my DIL hasn’t contacted his doctor, but she’s extremely stressed and tired, so she also needs a lot of prayer. No rest + a healthy infant is difficult enough, but the only rest she gets is after my son comes in from work, or when I’m able to give her a break. So please remember the parents in your prayers.
Apologies to everyone, as things got very hectic after my last update.
I had almost 3 weeks of daily trips to Eggleston. It’s only a 70-mile round trip from here, but the Atlanta traffic in the mornings and evenings made it a sometimes 2-hour ordeal each way – not including the 6+ hours spent daily at the hospital.
It was frustrating for us because we were told daily that Daniel would go home “right after stent placement”, then “as soon as his vitals remain stable for such and so time…” etc.
At one point, he had blood in his diapers for a couple of days and they were concerned it was the stent. But after certain heart tests were negative for that, other tests were run and determined it was GI related - a protein allergy. So he was taken off the breast milk and placed on a special formula and problem solved.
He was finally released 5 days before Christmas, but only 3 days after he came home, he had some coughing, so they re-admitted him to CICU stepdown unit for observation at Eggleston. We brought him home on Christmas Eve.
Anyway, with the holidays and taking care of my 3-year-old granddaughter daily (along with my 81-year-old mom) all combined to wear me out. I’ve literally just recovered from whatever hit me right after Christmas.
Sorry for being so long-winded, but I did want to let you all know what’s been going on and to again tell you how I covet your prayers! I don’t take anything for granted and wanted to let you all know how much I appreciate you, your prayers and kindness!
To those of you who sent PMs telling of similar experiences and your overcoming ... I say praise the Lord for your testimonies! Please know what a blessing that has been to my heart to have you tell me of your answers to prayer!
May God bless you all for your faithfulness!
Praying now.
So good to hear from you - prayers continue for you all.
Thank you very much for this update.
Continued prayers for Daniel Joseph and his mom and for the comfort and peace his family.
May you all gather strength from the plan of action that the doctors have laid out for all the possible contingencies.
I found over the years that the serious bumps in the road, sorrows, and those big “detours” eventually make sense because the Lord reveals their purposes in due time. I think that is because we humans need the rest of the story (as life plays out) to be able to look back and fully comprehend seemingly inexplicable heartaches and life-altering traumas.
Which brings me back to the names Daniel and Joseph. These two were held captive for what were ultimately very important purposes, yet in real time life wasn’t looking too positive for either of these men.
Faith is believing these accounts because through them we learn how God operates. His ways aren’t our ways (and amen for that!).
Thank you for keeping us informed. Prayers continue...
Just saw the thread and am praying for all of you for strength and continued faith. God bless all of you!
Still thinking about and praying for Danny Joe.