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