Too good to be true...moved to the NICU

On Wednesday the 12th of June, when Abigail was less than 12 hours old, an x-ray was ordered to look at the CCAM in her chest.  When the results came back, we received a call from the doctor.  They found pneumothorax.  It happens when air leaks into the space between the lungs and the chest wall.  While I was still on the phone with the doctor, a NICU nurse was in the room ready to take Abigail to the NICU for observation.  The urgency of all of it was the scariest part.  We weren't prepared for this complication, but it was most likely related in some way to the CCAM.


Abigail was hooked up to different monitors to observe her oxygen levels, heart rate, and her respiration rate.  (This had been higher than normal as well.)  They also put an IV in, which is the splint looking thing on her hand.  Eventually, they also put in a feeding tube through her nose. Because they thought she was working harder than normal to breathe, they didn't want her to be breastfeeding.  She was still able to get my milk through the tube.  The first 24 hours they basically monitoring everything.  She had blood taken several times to check her gas (oxygen and carbon dioxide) levels.  She never needed any assistance breathing so that was a good thing!  She also had several x-rays to monitor the pneumothorax. She was able to resolve this on her own as well and didn't need any interventions to fix the problem. 


While Abigail was in the NICU, we were lucky enough to get a boarding room in the hospital.  It would have been so hard to leave the hospital without her.  It also made it easier to get her the milk that I was pumping and to feed her when I was allowed to breast feed again.  We were shuffled around quite a bit, but it was worth it to be able to be near her.

Her last hurdle in order to go home was feeding.  She was on a three hour feeding schedule and had to take in a certain amount at each feeding.  The nurses would remove everything from her stomach via the feeding tube to see what she hadn't digested from the last feeding.  Then, I would breast feed her.  When Abby was done feeding, they would remove the breast milk to see how much she had taken in.  They would put it back in her and then either gave her milk I had pumped or formula to make up the difference.  I hated watching it because it seemed like it would be so uncomfortable, but Abby didn't seem to mind it.

I graduated to a crib and was allowed to wear clothes!

Finally, we were allowed to room with Abigail again.  We had to show that we could feed and care for Abigail with limited assistance from nurses.  During this time, we could feed ad lib, but did have to meet a certain intake amount every 12 hours.  The feeding tube had been removed so now to monitor what she was eating, we had to weigh her before and after feedings.  Between breast feeding and bottle feeding, we were able to meet the intake amounts.  On Monday, June 17th, we were able to go home.

We're thankful that Abigail had such great care and was monitored closely, but we were so happy to be home!  She'll be continued to be monitored closely in the next few months.  We'll go in often to see her general pediatrician for weight check ups and we'll also see the surgeon on a monthly basis. 

Speaking of the surgeon, he decided that he would like to remove the CCAM when Abby's 3 - 4 months old. With masses the size of hers, they have had great results removing at this age. (Babies go home a day or two after surgery!  I can't believe it!)  The mass is in the upper left lobe of her lung so he will remove this portion of the lung.  Lungs develop until children are 6 -7 years old.  Hopefully, this will give both of her lungs more time to develop and get bigger.  Her right lung is small because it was compressed against the chest wall due to the size of the mass.  We're also hoping her heart moves back into the correct position. 


I hope to continue to update the blog in a more timely manner.  Abigail is so precious I just have a hard time not cuddling her up all the time!  I rarely have my hands free.  : )



Thanks for keeping us in your thoughts and prayers as Abby made her grand entrance into the world.  It was a time of uncertainty and we're so happy to be home with a "healthy" little girl now.


Please keep all of the other babies and their families in the NICU in your prayers.  It's a stressful place to be and many of the babies are facing major health challenges. 


Love,


Scott, Sarah, and Abigail