Today marks 75 days with baby Jude!
So what's new?
Jude's continuing to slowly progress with his breathing: He's on a very low pressure setting on CPAP and his oxygen setting is currently at 25%. Since he's getting relatively little respiratory support from CPAP, he's being trialed on Vapotherm, which can be described as high flow nasal cannulas that supply oxygen-rich humidified air. For the past two days, he's been on Vapotherm for four consecutive hours each day, and he's handled it reasonably well, although he's experienced a slightly increased respiratory rate when on it. We're hoping and praying that he'll continue to get stronger so he'll be able to tolerate Vapotherm and/or nasal cannulas and get off CPAP soon!
With regard to weaning of his medications, Jude has been weaned completely off his sedative (Versed) and has been further weaned on his pain medication, fentanyl, which is a synthetic narcotic similar to morphine, but more potent. Since coming off Versed completely, Jude has begun to receive scheduled doses of Ativan (lorazepam), a drug that eases his anxiety and allows him to relax. In addition, Jude is also receiving scheduled doses of clonidine, which is often used to treat high blood pressure, but, in his case, it acts as a bridge medication to allow him to wean off his other aforementioned meds more easily. We're very excited that he's continuing to make progress with his weaning! Please pray with us that he can continue weaning at steadily in the coming days and weeks!
Jude is still on another med called sildenafil, which helps relax and expand his pulmonary blood vessels, allowing greater blood flow in the lungs. Sildenafil is actually another name for Viagra (!), but fortunately for Jude, it can help relieve pulmonary hypertension in addition to the other, er, "issue" that sildenafil is often prescribed to treat.
The area for which we most cover your prayers is Jude's digestion and absorption of his food.
Jude is currently receiving a continuous flow of breast milk (14 milliliters/hour) through a transpyloric tube, which delivers his food to the upper part of the small intestine, just past the stomach. Additionally, he is still getting electrolytes and certain other nutrients from TPN (bright yellow clear liquid in a bag) and fat from intralipids (cloudy/opaque substance -- looks like a syringe full of lard to me), both of which are delivered to him through a central catheter. (TPN and/or intralipids can eventually cause liver damage if given for too long, but Jude has handled it very well, so we're told. Please pray that this continues to be true.)
Testing over the last few weeks has shown that Jude has continued to have problems absorbing some of the contents of his breast milk. Over a recent 3-day stretch, some of Jude's stool was collected each time he pooped, and the samples were then sent to the lab for what's called a fecal fat test, which will tell us the percentage of fat that he's not absorbing.
One of the reasons why Jude may be having problems absorbing his food is that his intestinal villi, little protrusions that help absorb food in the bowel, have atrophied because Jude didn't have food in his gut for the first 6 weeks of his life. As Jude continues to have his bowel stimulated through feeds, we're hoping that his villi will continue to grow back and reverse the atrophy he previously incurred. However, quite a bit of time has passed since his feeds started, and Jude's doctors are wondering whether something else accounts for his malabsorption.
Since there is suspicion (although, as yet, no certainty) that a milk allergy or perhaps lactose intolerance is creating problems with Jude's digestion, Rose has begun a dairy-free diet. (For those of you who are wondering, a dairy-free diet doesn't just rule out milk, cheese, and other obvious foods that have milk as an ingredient; rather, it rules out anything that has milk, milk derivatives, milk proteins, etc. In other words, there's a lot of stuff that Rose can't eat.) Hopefully, over the next few weeks, we'll get a better understanding of exactly whether milk or lactose is a cause of Jude's problem.
Despite being concerned about Jude's progress, particularly absorption of his nutrition, we are still abundantly thankful that he is alive and with us after surviving so many problems and difficulties. Please join us in continuing to give thanks to God for Jude and for the miraculous work that He is doing both in and through our little baby's life.
I will extol you, my God and King,
and bless your name forever and ever.
Every day I will bless you
and praise your name forever and ever.
Great is the LORD, and greatly to be praised,
and his greatness is unsearchable.