Linus

Linus spent last weekend in the NICU at UNC but was off of IV fluids and most monitors by Saturday morning. Dave and I spent Saturday night at the hospital in a kind of trial-run to make sure we could get through a night on our own, managing feedings and diaper changes/bag changes. We did OK, but we were lucky to have that experience because it allowed us to get some questions answered while we were there. Monday at noon, we were discharged! It was so great to finally bring our little man home, one week after he was born.

Today is Thursday and we’re beginning to settle into a little bit of a routine. Linus is eating and sleeping well. Henry and Linus got to meet on Monday and introductions went really smoothly. Dave and I are still getting the hang of maintaining Linus’s colostomy bag, but we’re getting better every day.

We go back to the pediatric surgeon’s group in three weeks for a follow-up appointment. On Monday, they performed the contrast study. This study will help determine how they will proceed surgically with fixing Linus. Other than his birth defect, he is a perfectly healthy, happy, normal boy. And he’s pretty cute, too!

More photos after the break.
Read the rest of this entry »

For family and friends, I thought it would be helpful to explain Linus’s medical condition and what’s been done so far to treat it. The good news is that the birth on Monday went great. Labor was pretty quick, Linus was 7lbs 4 oz, and looked great. He cried vigorously and then nursed immediately when brought to the breast – impressive! He was alert with his eyes open, and just as cute as could be. However, during the doctor’s inital exam of Linus, they discovered a birth defect. Known as an imperforate anus, this birth defect has to do with how his colon is routed to his anus internally. It’s apparently a defect occurring in 1 in 5,000 births. As concerning as this might sound, with quick intervention this birth defect is very treatable. It does require specialized care, however, so on Monday evening, a few hours after his birth, Linus was transferred to the excellent Neonatal Critical Care Center at UNC Children’s Hospital in Chapel Hill.

On Tuesday, doctors performed various tests to determine if there were other related birth defects, such as a heart murmur or kidney problems. They administered IV fluids and glucose to keep him hydrated, and they inserted an NG tube into his stomach to collect gas and saliva that he might swallow. On Wednesday morning, the pediatric surgical team performed a colostomy. This means that they cut his large intestines and brought the upper piece to the surface of his skin – this is now the exit for his fecal matter. Linus will use a colostomy bag in addition to diapers for a number of months while his body matures. In the meantime, the surgical team will perform more tests and develop a plan for reconstructive surgery. Once the reconstructive surgery is performed and deemed successful, they will reverse the colostomy. To do so, they will reattach the two pieces of his large intestine and put them back in his gut where they belong.

It took him nearly a day to fully recover from surgery, and since then, he has been allowed to eat. He is consuming larger and larger quantities of milk at each feeding. He’s now up to 40 ml by bottle, which is just over an ounce. And this afternoon, he nursed for nearly an hour! Today they were so impressed that they took him off IV fluids. They also removed his pulse oxometer, so at this point he has very few monitors left attached to him. This is great news for those who want to hold him – holding a baby who’s all cabled up is a daunting task!

On Thursday we also started using a colostomy bag with Linus. A nurse demonstrated how to attach the colostomy bag and how to empty it. Today, Dave got a chance to empty the bag during a diaper change, and I got a chance to attach a new bag with the help of an ostomy nurse. We will be getting a chance to practice both emptying the bag and changing the bag over the next few days before Linus is discharged. We will also have a few visits with a home health nurse in the weeks after we bring Linus home to understand more about how to care for his ostomy. Click here to learn more about ostomies and ostomy care.

Saturday night, Dave and I will spend the night at the hospital with Linus. This will be an opportunity for us to practice managing feeding Linus and dealing with his colostomy bag. We’ll be flying solo but we’ll have the nursing staff available if we have any problems or questions.

On Monday, Linus will have a test performed on the lower part of his GI tract. They will do a contrast dye study to explore his lower rectum and see if there are any unexpected connections to other organs. This test will be used to determine how to proceed with Linus’s next surgery, which will be done in about 4-6 months.

We hope Linus will be discharged by Tuesday! We so look forward to bringing him home and getting to introduce him to his big brother Henry and his two cats.