Today, Lia saw her cardiologist and pediatrician for her 2 month check up. I'm just going to bullet the information, I think that will be the easiest. Some good, some bad. Read below:
Hugs to you all,
Ashley
- Chylothorax is history! Can keep going on the breast milk. Hooray for no more skimming!
- Left diaphragm is still collapsed, which in turn, makes for less lung expansion, which means she is still at high risk for pneumonia (Boooo) Luckily, we're heading into summer, and NOT into winter. Otherwise we would basically have to live like hermits. (doctors words)
- Breathing is steady, which means no reason to have to tack down diaphragm at this time. Still holding out that it will heal on its own in 3-4 months time.
- Due to increased risk for catching pneumonia and other germs, Lia's pediatrician said I couldn't pass her around much at the wedding this weekend...sorry for those of you who were hoping to hold her! At least you'll still get to meet her! Those of you who are around Lia a lot, (family) be prepared to wash your hands a lot!
- Incision healing very well!
- Weight: 9.4 lbs! (4th percentile)
- Length: 22 inches! (64th percentile) Yep, she is one LONG, SKINNY girl!
- Ok, for some not so good news....what we thought were 'stork bites' on her face (below ear and in the corner of her eye) are not actually 'stork bites' but hemangioma, and they are also covering the inside of her right cheek, the back of her throat, and the one on the corner of her eye is starting to grow into her eye. We are going to treat this with propanylol and monitor her very closely. We have to see an ENT (ears, nose, throat) doctor right away Monday, who wanted to also do an MRI, but when your sternum is being held together with wire, you cannot do an MRI (magnets), so she will undergo a cat scan, which means she has to be put to sleep, which means we'll be spending a day in the hospital. (We're not sure when all this will happen yet) She will also need to see an opthamologist and dermatologist for the one on her eye. Yes, I know what you're thinking, "Oh Ashley, thats nothing, you spent 5 weeks in the hospital!" But what I'm thinking, and what I'm most frustrated about is how there always seems to be one more thing added to our never ending list of issues with Lia. I know shes a special little girl, who is going to require a lot of care for the rest of her life, but it seems just as we're making some great progress, there is always something to slow us down. Needless to say, I had a good cry, and I feel a lot better now. Ready to take it on. Refreshed. Our little close knit family of pediatrician and cardiologist has now expanded to ENT doctor, opthamologist, dermatologist, and Lia. I just worry that everyone won't all be on the same page, and with someone so little, and fragile, and with so much medical history I want to make sure that there is good communication between everyone. For example, when we were at the pediatrician today, she had to call the ENT doctor to see what he wanted to do, and then he had to call the cardiologist to make sure the meds he was going to prescribe were ok for her to take, etc.
- Still 'scooping' Lia to pick her up. We can pick her up under her arms in one more month.
- No more having to wake her every 3 hours to eat. She can sleep the night through (ha!)
Hugs to you all,
Ashley
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