The Anderson Family

Scroll down to see updates as the Anderson family progresses in their CDH Journey! (All updates are written and given by parents with consent)

Update 12/2/24

Hi, we are the Anderson Family! We live in Omaha, NE with our 2 year old daughter, Naomi. We found out we were pregnant with our second child in May and were so excited to complete our little family with a baby boy! At our 20 week ultrasound, we were told that there may be something wrong with his heart. We saw the MFM a week later and found out the diagnosis was actually LCDH and a CPAM on the right lung. We were told that his chance of survival was only 10-15% percent. This was the most devastating news, and the doctor gave us no hope for our sweet little boy. We decided to do our own research on CDH and found so many amazing stories of survival and how strong these little CDH babies are. We got in touch with Dr. Kays’ team at Johns Hopkins All Children’s Hospital in St. Petersburg, FL. I went down in October with my mom and sister to meet the team and have some additional testing. Our plan is to relocate from Nebraska the week of December 9th and deliver soon after Christmas. They are expecting baby boy to need ECMO in the beginning and have about a 10-12 week NICU stay after that. This has been such a hard and scary process from the diagnosis to deciding to relocate for care, but organizations like the Eden Calhoun Charitable Fund make it possible and help lessen the financial burden during this time. We feel so blessed that we have found such an amazing medical team to care for our little boy, Callan Douglas, and so many other great resources to help us along the way. 

Update 12/30/24

We finally got some good/hopeful news! I had my third fetal MRI on Friday the 20th. This one only took about 2.5 hours instead of 3.5 hours like my second one! lol The report showed that they were unable to find the CPAM on the right lung which means it has either drastically decreased in size or disappeared! This was confirmed by the OBGYN on Monday, but we have not had a chance to talk to Dr. Kays about this yet. However, this should hopefully help Callan's case quite a bit as Dr. Kays had previously said he would be very confident in this case "if it wasn't for the CPAM."

I officially have an induction date set for Sunday, January 5th. Callan has been doing really well at all of my check-ups. He is growing well, moving a ton, and doing lots of practice breathing on all of the ultrasounds!

We were able to move into the other house on Sunday the 22nd and already feel right at home! We are so thankful for the Ronald McDonald House and all of their support, but it sure is nice to have our own space again. There is a big room that Naomi has designated as her playroom and an awesome playground just behind the house. We were so happy to get into this space before Christmas to be able to decorate a little, bake some cookies and set out some presents under the tree they provided. Naomi was definitely spoiled a little too much this year with presents, but we are so glad we could keep a sense of normalcy for her even though we couldn't celebrate with the rest of our family.

We have been taking advantage of the warm Florida weather playing outside any chance we get and taking another trip to the beach yesterday! Naomi is going to be so disappointed back in Nebraska where she can't go to the beach on a regular basis. This girl is definitely a water and sand loving girl!

I'm going to try to spend the next week just relaxing, packing my hospital bag and getting some things prepped for Callan's arrival. It feels so close yet so far away. The nerves are definitely kicking in, but I'm so excited to meet our sweet baby boy!

Update 1/29/25

Callan, our little miracle, arrived on Jan 6 at 05:11am weighing 5lbs 12oz and measuring 19.3in long. He was born via c-section due to the medication for induction causing his heart rate to decelerate. Immediately upon birth, he was intubated and taken upstairs for evaluation. He was able to breathe well enough on his own that ECMO was not needed. Due to Callan breathing above  the respirator settings, his oxygen saturation being at 100, and his blood gas levels being in range, they were able to decrease the ventilator settings fairly routinely. One of the x-rays at this time however showed air in his chest cavity around his good right lung. In order to allow the air to escape and not cause a collapsed lung, a small procedure was done in the room to install a tube in his chest. Even with this minor procedure, it was decided that Callan had stabilized well enough to perform hernia repair surgery on the morning of Jan 10. The surgery was completed in about 3 hours with no complications at all. On a scale of A-D, the hernia was classified as a C which means it was significant but not a worst case scenario. The patch that was put in place will make up a significant portion of his diaphragm now but will shrink percentage wise as he gets older and more diaphragm grows around it. In order to facilitate healing, the ventilator was turned back up so Callan would not have to work as hard. Following a weekend of rest, the ventilator weaning process began again. Based on oxygen saturation and blood gas CO2 levels, the ventilator was turned down little by little. It took 1 week for the ventilator settings to drop from 80 down to 14 which is the setting where they extubate and move to a CPAP. So exactly 2 weeks from birth on Jan 20, Callan was extubated and started breathing on his own for the first time ever.  On Wednesday Jan 22, the final hurdle was cleared and we were able to hold our baby for the first time. This great milestone was followed by a slight setback when his heart rate and respiratory rate became elevated along with spiking a low grade fever. Blood draws and cultures were done to discover what the issue may be. Though nothing grew on the culture, his white blood cell count was high so a round of antibiotics was ordered. His numbers returned to a normal level quickly, and he was able to wean down on the CPAP settings. We officially got to level 5 today which means he can start the next major milestone of feedings! We are so proud of our strong boy and how well he has been doing!!  And we are so thankful for the Eden Calhoun Charitable Fund for all of their support during this long and emotional journey. We are getting closer to being able to bring our sweet boy home!

Update 3/2/25

Callan was able to start feeding on Wednesday, January 29th. This first day was to simply get Callan acclimated to the idea of drinking a bottle/nursing. On Thursday, they had him start feedings at 5 ml per bottle every 3 hours. The process is to go up by 5 ml increments until he gets to 55 ml and is gaining weight well. Callan had a few reflux scenarios and some minor choking incidents. However, his biggest struggle was sleepiness and trying to get him to wake up to eat. Everyone says this is the hardest part of the journey, and they definitely aren't wrong. Callan was able to wean completely off of his CPAP on Saturday, February 1st and has just been on wall oxygen! He has been able to maintain his O2 saturation well even without the pressurized air helping to keep his lungs inflated. Most likely he will still have to go home on oxygen, but that is something we will then work with his pediatrician to slowly wean off of as he grows and gets stronger. Callan finally got to meet his big sister as well! They were able to lift the visitor ban for kids since the RSV cases have dropped enough. Naomi seemed pretty excited to meet him. Callan was still working on increasing his feeds and gaining weight and was doing so well. But then he started to plateau around 30 ml. He began showing signs of some moderate to severe reflux and started throwing up a little bit with feeds. The doctors suggested starting on gabapentin. They have done a lot of research on gabapentin and NICU babies that struggle with feeds and reflux. He responded really well to those two changes and worked his way up to 45 ml feeds with the goal of 55 ml. However, February 18, he started throwing up every feed and even between feeds. He couldn’t keep anything down. At first we thought he might have caught a stomach bug because the rest of us weren’t feeling too well. But then they ordered an xray which showed a bowel obstruction. They stopped his feeds and started him back on IV nutrition. They placed an NG tube to help decompress the stomach and remove gastric contents. They monitored him super closely for 24 hours and repeated X-rays to see if it would improve. However, Dr. Kays stopped in and said there had been no improvement with the bowel obstruction and he would need surgery. Callan had his second surgery at only 6 weeks old on Thursday, February 20th. The surgery is called an exploratory laparotomy which is when they open up the abdomen to examine all of the internal organs. Dr. Kays went in through Callan’s original incision for his CDH repair surgery. He pulled out all of the intestines to figure out where the obstruction was and if they were just twisted or if adhesions/scar tissue had formed causing the obstruction. It ended up being worse than he suspected because there was a band of scar tissue that had formed and cut off blood supply to a section of small intestine causing it to die. He had to remove about 4 inches of his bowel in this area. Dr. Kays said this was a small enough section removed that Callan won’t even miss it as he grows and should have no issues later in life. Callan was able to come back up into his room completely extubated and back on wall oxygen! He healed well over the weekend and was able to get the NG tube removed so he could restart feeds on Monday February 24. We started off back at 5 ml per bottle and worked our way up by 5 ml every 12 hours. There was a minor stall at the 30 ml mark again but he was able to overcome it in a day and currently is eating 40 ml per bottle. The hope is there will be no more complications and we will be discharged soon!