Josiah’s birth and his first two weeks of life have taught us more about faith, trust, and surrender than we have ever learned in all of our days combined. Whenever somebody has asked how we’re doing lately, my common response has been, “I feel like I’ve lived a year in two weeks!”
As I mentioned in my last post regarding the promise God has given us over him and his name – that Jehovah has healed – this has become the foundation upon which we say every prayer, declare every word over our son, and the filter through which we listen to what the doctors have been telling us.
I have never been more thankful for medical professionals. Every surgeon, doctor, nurse practitioner, and nurse who has been with our son…my heart overflows with such gratitude for their dedication to their field. To all of my friends out there who are training to enter or who are in the medical field – thank you. Thank you for all your countless hours of studying, taking out too many loans, spending years and years in school, and sacrificing your own lives and families in order to help someone have a fighting chance at a beautiful life.
Yet as much as I have appreciated all of the medical professionals who have been with Josiah, we are constantly reminding ourselves of the truth – God is the Great Physician, He has the final word, and as the Creator God, He is not done with Josiah yet.
So with that truth anchoring our souls, I will give an update as to what the doctors have told us so far. As you pray, please do so with the same truth anchoring you that is anchoring us…God is still in the process of fearfully and wonderfully making our son. We are contending to see some miracles that will astound our doctors and give glory to our Sovereign God.
- Josiah was born with an imperforate anus (even if he made it full-term to his due date, he still would have had this condition). He had his first surgery the day after he was born to temporarily redirect his stool out through his side (called a colostomy). In about six months, he will have a second surgery to permanently redirect his digestive system down through his bum so that he can pass stool normally. Although all of this is very successful from a surgery perspective, doctors say that 85% of kids struggle with either constipation or incontinence for life post-op. We are contending for surgery to be successful (yet still asking the Lord to work a miracle and heal this naturally!) AND that post-op, Josiah will train well and be a part of the 15% who do not struggle with bowel movements for life.
- Often with an imperforate anus, there are also several other areas of the body that are affected. Upon his initial ultrasound hours after he was born, doctors saw that instead of having one kidney on each side, Josiah has a duplicate kidney on the right side. The good news is that Josiah has been urinating well into his tiny, little diaper each day from the start! Urologists will be following up on his kidneys as he gets a little bigger, but so far, his kidneys seem to be working just fine. We are contending for everything to function normally regardless of the placement of his kidneys.
- The doctors also performed an echocardiogram on his little heart and found a small VSD (a hole in the wall separating the two lower chambers of the heart) and a small PDA (a hole in the aorta). This is why he also has a heart murmur right now. The doctors are hopeful that these will close up naturally over time as he grows. As we have been praying, we have been confident that these little holes will indeed close up!
- This last one the doctors are not certain about so we have not heard anything definitive. The doctors say Josiah MAY also have a tethered spinal cord (where the end of the cord doesn’t wrap up all together but instead is tethered like the end of a frayed rope). This MAY down the road affect mobility and bowel functions. At this point, we are praying that this will NOT be the case and that the Lord will finish developing and healing his little body.
Now on to his amazing progress over the last two weeks of his life!
- His first surgery went well and he started passing his meconium within a day or two post-op. He has now started to pass the yellow-ish/dark brown, seedy breast milk type of poop into his ostomy bag which is awesome! This means that his digestive system is starting to do what it needs to do. I’ve never been more excited (or thankful!) to see poop in my whole life.
- Right from birth, he has had a strong set of lungs (for preemies, the greatest concern is always lung development and breathing). Just a few days ago, he was completely taken off of oxygen support and has been breathing well ever since. This is a HUGE praise report!
- This week, Josiah has started taking my breast milk (through a feeding tube that goes down into his tummy) and has been increasing steadily on the amount he is taking each day. Since he is now taking enough breast milk, he no longer needs the IVs that have been giving him his nutrition the first week of life. This is so important because at this point, his biggest objective is to grow! Once he grows, we can start assessing those areas of concern the doctors have over his little body. He’s also started to gain a little bit of weight each day! Every ounce counts!
- He looks more like daddy at this point (he’s got a lot of hair and the longest arms and legs and biggest hands and feet…especially for a preemie!) but we think he’s got mommy’s feisty personality – haha! 🙂 He’s a little warrior, for sure!
Now on to some pictures…
The first picture on the left is of us on Thanksgiving Day! You can’t really see anything but his little head, but it was the first day that we did “kangaroo care” which is so good for his growth and development, but also so good for this mommy’s heart.
The picture at top right is of him mid-yawn while doing kangaroo care earlier this last week. I know it’s pretty biased to think that your own kid is cute…but he’s pretty darn cute. 🙂
The picture at bottom right I took because I felt like it was more of an accurate representation of his current size compared to me when we are doing kangaroo care. He is little, little at this point…but he’s got a mighty, warrior soul tucked in there!
Though our days are now consumed with NICU visits (and mine also with pumping around the clock!), your constant support, encouragement, and checking in on us has meant SO much to us. Your prayers have strengthened us where our own strength has run out (on numerous occasions!) and His grace has truly been sufficient for us on this fast-track to becoming praying parents.
We will keep you updated along the way. Thank you for being a part of Josiah’s miracle story. One day, we will all declare together, “Jehovah has healed!“