I saved Miss Addison for last because her story is the longest. Addison was baby #1, aka baby A. When I was pregnant, Addison was down low in my pelvis and when she kicked, it felt like she was hammering on my hip bones. Addison was the one who decided to get the party started the night the girls were born. They never said for sure, but I’m fairly certain it was her water that broke and she was getting ready to be born naturally when they rushed me off to a c-section. She weighed 2 pounds and 0.5 ounces and was 13 inches long.
Addison was by far the strongest of our girls for quite a while. She was the most stable and she was the first to be on regular oxygen, like they would use for you or I. She first got sick at the beginning of September. She was vomiting and did not look well. It was thought that she had some type of infection, and she was on antibiotics for a week. After that, she did well for about a month. Then, at the beginning of October, she got sick again. Her belly was very distended, she acted like it hurt and she was having trouble breathing. She ended up back on the ventilator because her belly became so big that she couldn’t breathe properly. On October 6th, she was sent to Akron Children’s Hospital to be evaluated by a pediatric surgeon. They thought she had necrotizing enterocolitis (NEC).
Addison ended up having an exploratory surgery on October 8th, because the surgeon felt that she wasn’t responding to treatments like a baby that had NEC and he wanted to see what was going on. It turns out she had a bowel obstruction, which he was able to remove. He thought that when she was ill in September, she likely had NEC and probably had a bowel perforation that sealed itself off and then the scar tissue and inflammation caused the obstruction. So he removed the obstruction, but had to give her a temporary ostomy to allow her bowel to heal and the inflammation to go down. He planned to reconnect her bowel in 6 to 8 weeks. She had so much inflammation, that she had to wait the full 8 weeks and did not get her ostomy reversed until December 4th. She was not able to take a bottle until after her surgery because she struggled to digest and tolerate what food she got through her tube. Once she was able to take a bottle, she got the hang of it very quickly and we were able to bring her home on December 18th. Addison spent a total of 120 days in the hospital.
Unfortunately, her problems were not yet over. The poor girl cannot seem to catch a break. A couple of days before she was discharged from the hospital, Addison had a head ultrasound because the doctors were concerned about the shape of her head and the fact that it was so small. The ultrasound showed she had had a brain bleed at one point and now had periventricular leukomalacia (PVL), which means that some of her brain tissue had died. This put her at risk for a whole host of neurological and developmental problems, including cerebral palsy. We were told that she would definitely have some level of developmental delay and neurological issues, but only time would tell us how severe they would be. In May of this year, Addison’s neurologist officially diagnosed her with cerebral palsy of all four limbs. She has gets very stiff and has muscle spasms, especially in her arms. She is slowly learning to hold her head up and control movement of her head. She cannot roll or sit up by herself, and even though she is 11 months old, she cannot yet eat off a spoon. She coos, but does not babble or interact very much so far. She smiles and holds eye contact for short periods.
Addison has also struggled with eating over the past couple of months. She struggles to eat enough and she has trouble latching and getting the formula out of the nipple. She struggled with weight gain at the end of her hospital stay and when she first came home, so she is on a high calorie formula. We have seen speech therapy and had a swallow evaluation done. The swallow eval showed that she aspirated every thickness of formula to some degree. She did the best with honey-thickened formula, so that is what we use. Subsequent testing showed no aspiration, but Addison still struggles to eat. She has recently started coughing a lot and occasionally gagging and vomiting after eating. She also tends to be very fussy. Of course, no one has any good answers for us thus far. I tend to feel like everyone passes us off to someone else or acts like I’m being overly dramatic (but that is a story for another day). We just want Addison to be content and to reach her full potential. She is our little peanut: at 11 months old, she weighs 14 pounds and 14 ounces. She is a little cuddle bug and she especially loves her Daddy. She loves to sit up. She also loves being outside. She can be rather particular at times, but, hey, the girl knows what she wants! She tends to be quite a challenge, but those moments when she smiles right at me or really looks at me and pays attention make it all worthwhile!
If you’re curious, you can check out info about NEC here:
Cerebral palsy here: