On June 5, the Liggett family welcomed their third son, Reed Robert, to their family. The first 12 hours of life seemed like “normal” newborn bliss. However by Reed’s 2nd day of life, he developed very concerning symptoms that made the pediatric hospitalist transfer Reed to a hospital with a level 3 NICU. Upon arrival, the doctors immediately started running tests, XRs, placing multiple IVs and a NG tube and paging a pediatric surgeon. The pediatric surgeon diagnosed Reed with a congenital bowel defect. Basically Reed’s colon is not connected to his rectum so there is no place for his stool to exit. Reed was rushed to emergency surgery to place a temporary colostomy and mucous fistula to allow a place for stool to pass through his body.

After the 2 hour surgery, Reed went to the NICU. His current NICU duration will depend on how quickly he is able to move bottle feeds, how the colostomy and fistula heal and if infections/complications occur. Also, with this type of congenital defect, the doctors have to rule out other birth defects that commonly go together. So this week Reed will undergo multiple tests.

The surgeon has discussed future care as well with the Liggett family which includes two more additional surgeries over the next 6 months. Once Reed is out of the NICU, he will need to undergo a speciality imaging test to find out the severity of Reed’s case and where the colon ends in his body. The 2nd surgery will involve connecting Reed’s colon to the rectum. Then the 3rd surgery is to remove the colostomy. After each of these surgeries, Reed will require hospital stays as well.

While the Liggett family’s biggest request is for prayers for their sweet boy, they also are in need of financial support as they carry the burden of these medical bills. In addition to their extended stay at the hospital, all the travel expenses and medical bills associated with that, both Adam and Jacki are away from work as they care for Reed and therefore could use help with everyday living expenses.

Our hope is to help eliminate some of the financial strain so they can focus their time and energy on getting their son the very best care.

Update on Reed:

Tuesday June 11th -

They were able to take out his NG tube and progress to very small amounts of pumped milk via bottles over last 2 days.

However Tuesday was a rough day. Reed is already really “hard poke” to start an IV on and his veins are so small, so his IV sites are only lasting about 1 day.

Reed has had 4 IV sites already and they all had failed. They paged a specialist to come place an IV. She was actually able to place 2 more!

In the original surgery, a colostomy and a fistula were placed. Tuesday, his fistula was separating from the skin of his belly causing him to have A LOT of drainage from the fistula (which is not normal). Because of this, the surgery team scheduled a surgery to re-attach the fistula.

Wednesday - June 12th-

During the night, one of the IV failed again so after multiple attempts they placed another one. The doctors talked about placing a central line during surgery since his IVs keep failing.

One hour prior to the scheduled surgery the fistula stopped draining almost completely! Praise God! This had been our pray through the night that the fistula would stop draining and heal!

The surgeon said based on what she saw she didn’t think surgery was needed Tuesday but we would monitor the fistula and if it started draining again they would consider surgery. For now they said would also await a central line/ placing more IVs as long he keep up with his feds!

Once surgery was canceled on Tuesday, they allowed him to start nursing directly to see what his intake would be! Through weighted feeds, Reed took everything he needed through nursing and didn’t need to be supplemented with a bottle!

Through the day his last IV failed but because he was taking in a normal amount of milk they didn’t need to place another one!!

They have had some trouble with getting his stoma bag to stay on. On Wednesday it leaked and fell off 5x. So Thursday they are paging a stoma nurse to come help!

Also praising God for a normal kidney ultrasound!!! The doctors have completed all their additional testing to rule out congenital defects that commonly go together and Reed only has his bowel condition. None of the others!!!!!