Tuesday, October 13, 2009

Update

Thank you everyone for praying for Abby and asking about her. I thought I'd write a little update.

The pediatrician's office called last week wanting to see Abby to see how everything was going, especially since the pediatrician hasn't seen Abby since this whole new treatment started. Well today she saw Abby and she noticed quite a visible difference from the last time she saw her. I think she was pleased with the results up to this point.

Also last Tuesday/Wednesday Abby wore another holter to monitor her heart to see if it was safe to increase her dosage. This medicine, for hemangioma purposes, is increased cautiously. The cardiologist did decide after reviewing her 24 hour holter, that her dose will be increased to the maximum for her current weight. We start the new dosage tomorrow. Next week, Abby will wear another holter just to make sure this increased dosage is working properly and not having negative effects on her heart rate. The two big concerns with this medicine that I see are heart rate and blood sugar. So far, so good.

Next Tuesday, Abby sees the dermatologist and it's very likely he will laser again. There still seems to be some ulceration activity. She still is wearing bandaging and hates it. The two topicals are still being used. We'll see what he says next week when he looks at it.

The dermatologist is working on the surface of the hemangioma and the cardiologist is working underneath to shrink the size of it. Both doctors are excellent and we are seeing progress on both fronts. :)

Both girls are doing well. Abby weighs 18 lbs. 4 oz. and Rachel weighs 19 lbs even. Both eat solids, crawl, play with toys, etc. Rachel sits up without the use of her hands. Abby trys to pull herself up on everything. I think she wants to skip the sitting up and start walking. Both have already grabbed doggie's food!!! Everyday is an adventure.

I'll post another update next week.

Sunday, September 20, 2009

Summary of it all

Abby has been home from the hospital for two days now. She is happy to be home where she can be with her sister, play with her toys, sleep in her own bed, and watch Baby Einstein and Heathcliff.

To answer why Abby was on a heart monitor and had to stay in the hospital...

After going to UIC and Hope Children's Hospital, Abby was still suffering from an ulcerated hemangioma. Our pediatrician called Children's Memorial and set us up with another dermatologist. This dermatologist prescribed two topicals, one to be applied in the morning (an antibiotic ointment) and one to be applied in the evening (a medicine to help heal the ulceration). He also wanted Abby to start an oral medication that has been known to shrink down hemangiomas. The medication needed to be prescribed by a cardiologist since it is normally used as a heart medication. By coincidence a doctor found that this particular medication used for cardiac purposes, also does wonders for hemangiomas. It's used in people with high blood pressure, after heart attacks, etc. In order for her to start this medication she needed an EKG and to wear a holter (heart monitor) for 24 hours prior to starting the medication for baseline purposes. After doing these two things, she was admitted into the hospital where doctors and nurses observed her for 4 doses. She wore a heart monitor during her stay and had blood pressure readings taken. An ECHO was also performed to see how her heart was functioning. The cardiologist thought she was well enough to go home and continue the medication at home. Her hospital stay was about 24 hours. We were given a stethoscope to listen to her heart before and after the medicine is given. She receives three doses a day.

Also during her hospital stay, I had the staff speak with pain management. Everyday Abby gets her bandaging changed twice so the topicals can be applied. Every time she screams and seems to really not want me to touch that area. She was on Tylenol with codeine and she was bumped up to Hydrocodone by the pain management team. Even on this medicine, she seems to still hate her bandaging being changed but seems to recover quicker afterward. This hemangioma has caused her stress, anxiety, and pain.

Tomorrow Abby sees the dermatologist again. He may laser the ulceration. Afterward, we go back to Children's Memorial for another holter for her to wear for 24 hours at home. The cardiologist wants to see how Abby's heart is doing and if all is well, increase the dosage on the heart medication.

The goal is for the hemangioma to start shrinking down and for Abby to be bandage free. Thank you for praying for her.

This is a link to a publication about the heart medicine Abby is taking for the hemangioma.
http://content.nejm.org/cgi/content/full/358/24/2649

Monday, June 29, 2009

Fun in the City

Today was Abby's appointment to see the specialist at UIC for her strawberry birthmark. The doctor thought everything was progressing the way it should. The blood vessels in the birthmark have broken up more even though it is still significantly large and elevated. I was happy to hear that the doctor still thinks treatment is not necessary. We are scheduled to see her again in three months.

Wednesday, June 17, 2009

Teeth

Rachel has two little white teeth poking through on the bottom of her mouth. Abby has one little tooth coming through on her bottom gum as well! The teeth are starting to come in!

Saturday, June 13, 2009

4 months

This past Monday, the girls had their 4 month doctor visit. Rachel weighed in at 14 pounds 12 ounces and 25 inches long and her sister Abby weighed in at 14 pounds 6 ounces and 24 1/2 inches long. This is the first time ever Rachel has passed her sister in height and weight! The girls did receive shots and the doctor thought they were doing quite well. She would like them to start eating solids with a spoon! Just one tablespoon a day during the fourth month and two tablespoons a day in their fifth month. The girls did scream at the medical assistant and doctor. After further discussion about them doing this with others made it very clear to the doctor that they are in the "stranger anxiety" phase.

The doctor does want Abby to go back to the pediatric dermatologist at UIC about the strawberry birthmark. An appointment was made for the 29th of June.

Enjoy a couple videos:

video video

Thursday, June 4, 2009

Latest Update

Okay, so it has been a while since we have posted an entry on our blog. Since the twins were born, we have been very busy and transitioning into parenthood.... parenthood to newborn twins no less as our first child(ren) experience. It was certainly a rough beginning. The twins both have GERD (a reflux disorder) which was causing them to vomit quite frequently. Abigail has a strawberry type birthmark on chest which was checked out by a pediatric dermatologist at UIC. She had an ultrasound done on it and everything has come back good.

We certainly appreciate all of the thoughts and prayers. We're still not quite into a regular routine. In other words, life is not quite back to normal but we're getting there. There must be a term for this... perhaps "baby shock" or "twin shock".

More later....

Wednesday, March 11, 2009

Doctor Visit - Gastro-Esophageal Reflux

Wow! Life with twins is definitely different from anything else I have ever experienced. They are such beautiful and good babies.

Yesterday Andy and I took the girls to the doctor because the vomiting started again. They are now on an additional medicine Raglan (three times a day) and the Zantac has been increased to three times a day. The hypoallergenic formula is still being used and rice cereal is still being added as a thickener. The pediatrician says the girls have gastro-esophageal reflux. The good news is by or before their first birthday the issue usually corrects itself.

Thank you to everyone for the cards, flowers, gifts, encouraging words, and prayers. We miss all of you. :) Pictures will be added to the site hopefully by tonight. As embarrassing as it is, I don't know how to fully do that without Andy's help. I'll have Andy show me the process so I can add pictures often.