So after we left the NICU, I remember being extremely impressed with the care we had received. The RCH NICU staff (and hospital staff in general) was extremely helpful, kind, and did everything they could to help us through this scary and uncertain experience. The reason she was sent to the NICU was because she had hypoglycemia (low blood sugar) and emesis (vomiting up formula they gave her). These issues were resolved very quickly with the help of an IV and never became a problem again. However, they still kept her in the NICU...why? Well a few things.
One disclaimer to begin with...when they tell you that lots of babies have extra digits at birth...they are right. When they tell you it is no big deal...they are right, sort of.
The truth is...it is a big deal if you are Caucasian. Apparently many African American babies are born with extra digits...something like 1/143 live births or something. It can also be common in other darker complexion ethnicities, but not as frequent as 1/143. These babies born with extra digits are typically perfectly healthy and its just some random biological occurrence that truly means nothing.
However, in a Caucasian baby like Elin, it is FAR less common and typically represents a major red flag to a genetic issue. More to come on that in a bit...
In the NICU it was determined that Elin had a healthy:
-Brain (nothing visible on the MRI)
-Liver
-Spine
-GI System
-Respiratory System
-Bones, skin, etc.
-Nervous system, reflexes, etc.
She was able to:
-Breastfeed
-Gain weight
-Swallow
-Sleep...some.
-Go to the bathroom
-Cry (although it was a bit raspy and weak)
There were a few things that were needing further exploration upon discharge:
-Her heart had a small hole and a misalignment of the right ventricle valve (don't quote me on this). We were told this was common in a baby born early and that it should resolve within a month. It DID! :)
-Her kidneys were slightly enlarged (hydronephrosis). They told us this too was common and she should outgrow it. She did! Thank heavens.
-She had a raspy stridor (floppy larynx). The cartilage was too soft. They told us she should also outgrow this. She did...pretty much. She still has a bit of a wheezy sounding breathing pattern. It is much better than it used to be. People used to look at me like my child was dying, they don't anymore. Ha!
-She had reflux disease. This was treated with medication, and she still hasn't completely outgrown it. It is common in babies who are born early and common in babies who have chromosomal issues. It doesn't and hasn't ever interfered with her ability to gain weight, etc. so we are thankful for that.
-She had failed her hearing test on her right ear...but on the fourth test she passed it. Yay!
-It was recommended that she have a repeat eye exam; it was confirmed that structurally her eyes are fine.
-Lastly, and most significantly, it was found through microarray genetic testing that Elin had a chromosome 9 abnormality. We were dumbfounded to learn this because I had had all the tests done during my pregnancy, I had had 5-7 various ultrasounds, and was never alerted to any problem or red flags that might exist with this baby. To make things even more confusing, the cause of her issue was because I had a balanced translocation on my 9th and 13th chromosome. this means there was a small piece of my 13th chromosome that switched places with a small piece of my 9th chromosome. This doesn't effect me because my chromosomes are balanced and so the right amount of genetic material is there. I will write more about this phenomenon later, but it was recommended that Elin (and of course us too) meet with a geneticist to better understand how this may effect her long term.
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