We Are Going For A Second Opinion

Sophia was put on Donnatil a week ago. I began giving it to her (4x a day like the doctor said) on Tuesday I found that I am NOT a big fan. I was told that one of the side effects of this medication is drowsiness…Sophia slept 22 hours. I had to practically hang her by her toe nails to wake her up for her bottles. On Wednesday, I gave it to her again hoping that it was just her getting adjusted to the medication the day before and again she slept for 21 hours. So, on Thursday I skipped 2 doses and she was a happy smiley baby. I spoke to the doctor on Friday, by phone, and told her my concerns. She gave me the go-ahead to give her the medication on an as needed basis. This has been working. I met with the doctor yesterday. I was not impressed.

Here are my concerns; Sophia is still on a laxative and has not had a bowel movement without assistance since she was in the hospital after birth. Today I didn’t give her the laxative to see if she can go being aided by only the Donnatil. She has been pushing since 9:00am this morning and still hasn’t gone. Tonight has been rough because she is now in pain and the Donnatil is not helping. She continues to have reflux issues that have not been a focus and is getting worse. Her spasm problem is due to her digestion system working to fast and the doctor put her on a formula that goes quickly through the intestines. Wouldn’t that make the situation worse? She continues to have painful gas. I have begun to give her Mylicon is her bottles and it seems to be helping. Lastly, I have been noticing mucus in her stool. I was informed that this is the white blood cells in her intestines because they are inflamed. This is new in the last 4 days.When I spoke to the doctor I expressed my concerns above and told her that I am not comfortable with the diagnosis or the treatment. She reassured me that she will outgrow these problems. She also told me that even if this turns out to be a different problem that waiting until she is 3 months will not affect her in the long run. WELL THAT’S GREAT…UNTIL THEN?

So, Mike, Sophia, and I will be making our way into Children’s Hospital in Boston the second week of July. We will be meeting with the GI specialist there for a second opinion. There is no doubt that she will outgrow this, but until then I refuse to medicate my child to the extent that I am without another doctor’s opinion. Until then I will be keeping her comfortable with the medications that she is on. If she doesn’t have a bowl movement by tomorrow morning then I will be putting her back on the laxatives. Our next appointment at Mass General is 3 weeks from yesterday. We are not sure if we will return there. It will depend in the Children’s Hospital visit the week before. Until then!

Calm Happy Baby

We had our appointment at Mass General yesterday. After reviewing the records I kept over the last week of Sophia's feedings, diapering, and behaviors the doctor believes she is having abdominal/intestinal spasms. So, they changed her formula to Elecare. It is a prescription formula that breaks the proteins to the smallest forms. This will make it easier for her intestines to digest. She has been put on an antispasmodic medication that will alleviate the pain she has been experience during her bowl movements. She has been taken off the Prilosec because the antispasmodic medication should dry up a lot of the acid in her stomach. She is still on Mylanta until we see how her reflux is on the new medication. She continues to take Little Tummies. She is on a dosage now that acts more like a stool softener then a laxative.

I started her on the new medication this morning and her new formula last night. She has had a great day. She is a little drowsy from the medication but is calm and happy. I feel like I have my Sophia, the one I brought home with me, back! We go back on Monday, so I will be sure to update you then!

Also, I want to thank Tammy VanRyzin for her help last night. The medication that Sophia is on scared me a little. So, Tammy, having resources that I don't, did the the research for me and assure me that it was OK to use it on my baby. I couldn't ask for a better friend! Thank you Tammy for the help and for the words of wisdom you gave me last night that I needed to hear!

Mike's First Father's Day

Well, Mike’s first Father’s Day is almost over and I would have to say that it was a great success. Sophia was kind enough to wake us up at 4:00am this morning looking for her bottle. After Mike was done feeding her, Sophia and I insisted that he go fishing. So, at 5:00am Daddy set off for a 4 hour fishing trip. When Daddy got home he was greeted by Sophia and his favorite breakfast pancakes and bacon. Sophia insisted that I carry her around the kitchen while I made Daddy his breakfast.



During breakfast Sophia took a little nap and Daddy enjoyed his breakfast and opened his presents. Sophia is so grateful to have such an awesome Daddy that she bought him the lawn mower that he has been wanting and a book that they can read together called, “Daddy and Me.”

After Sophia’s nap and early afternoon bottle we took a family trip to K-mart, so Daddy could by fishing hooks and then to the butcher shop so daddy could get some steaks to grill. We got home just in time for Sophia’s 1:30 bottle, so peace was kept in the house.


Sophia and I laid down to watch a movie and Daddy spent the rest of the afternoon out at his grill. The steaks were great! After dinner we went for a family walk and Daddy read Sophia their special book. It was a great day had by all!

We Are Feeling Better!

Sophia had a very busy day at the doctor's yesterday. She had the ultra-sound and Barium x-ray done. The ultra-sound was done to make sure that all her organs were in the right places. That checked out fine. The x-ray was to check for blockages in her upper digestive tract. That also came back OK too. (side note: The x-ray was really awesome. Instead of them having her drink the barium before the x-ray and then taking pictures, they had the x-ray play continuously on a TV screen and had her drink the barium while being x-rayed. It was the coolest thing to watch.)

So, at this point everything they have tested for has come back OK. She has been given a formula that is whey based and she seems to be doing better on that. She has begun taking the Prilosec for the reflux and that should begin working by tomorrow night. In the meantime, she has been taking Mylanta to help relieve the reflux until the Prilosec kicks in. She started Nystatin for her thrush yesterday and as of this morning she isn't showing anymore signs of mouth pain. For the big problem, pooping, we have to give her a bowel stimulant to get her body used to the bowel movements and to prevent constipation.

At this point, she has not had a BM yet and she has been on laxatives since 1:00pm yesterday. I gave her more this morning and she should have a BM by 5:00pm tonight. If she doesn't by tonight, then we need to bring her back to the doctor's for more tests, mostly likely Friday. They haven't tested her lower digestive track yet because it is a painful procedure and we want to exhaust all options before the barium enema. If she does have a BM today, then her next GI appointment will be Monday.

Sophia is feeling a lot better today. She has showing signs of improvement last night and is doing even better now. She is not 100% yet, but getting there. Mike and I are very thankful for everyone's support over the last month. It means the world to us!

Road to Recovery

I wanted to write a quick entry and let everyone know how Sophia's appointment with the GI specialist went. They found that she has thrush in her mouth and has probably had it since she came home. They say it is due to the antibiotics that she was on in the hospital. At this point she has had it long enough for it to be uncomfortable and may even be causing her pain. They will be giving her medication for it tomorrow. Also, she is showing signs of reflux. This is common in babies that had a traumatic birth. She was put on Prilosec and will begin that tomorrow. As for her BM problems, they put her on another formula that breaks proteins down differently than the other formulas. We began that tonight and she seems to be able to expel more gas then she could on the other formulas. Tomorrow we go back and she will be having an upper GI done and an ultra-sound on her belly and intestines to check for blockages.

At this point she is miserable. She wants to be eating all the time because it makes her mouth and throat feel better. The problem with that is that she then has gas problems. It is a no win situation. She will sleep a little at a time, but most of the day she spends crying and screaming. Though each day it seems to get worse, Mike and I are hopeful that the good days are close. Hopefully tomorrow we will get more answers.

One Month Old

Sophia is a month old...can you believe it?!

We had her 1 month Dr's appointment Thursday and she met all her 1 month developmental milestones and a couple more from the 2 month milestones.

WHAT A SMARTY PANTS!

Though very smart, she is still having digestion issues. Thursday night we ended up with a very upset baby until yesterday at her 1:45pm feeding. This was the longest she has gone with an episode (painful cry, not sleeping, not pooping, gassy, ect.). I spoke to the doctor about it at her appointment and he agreed there was something going on and referred us to a GI specialist at Mass General. Mike and I will be taking her in tomorrow and hopefully we will get some answers.

I will be sure to update everyone once we know something. The good news is that she is feeling better today. She is sleeping a lot, but is back to herself. Mike and I will need at least a week to get us back to ourselves!

What Sophia Has Learned The First 3 Weeks Of Life

I realized today, while feeding Sophia in the back of my parked car in the Target parking lot, that she has learned a lot in the last 3 weeks of life. Sophia has learned that if she clicks at me, with her tongue, I will put the bottle back in her mouth. She has learned to spit. Not spit-up but spit...she puckers up and spits her formula at whoever is feeding her. She learned to hold formula in her mouth and then press her tongue to the top of her mouth and let air out, it makes Mommy crazy and makes for a beautiful formula beard. She has learned that Mommy's side of the bed or in Daddy's arms are the best places to sleep when Mommy gets up to wash out the bottles at 5:00am. She has mastered sleeping with one eye open so she doesn't miss the action going on around her. She has learned that the best place to poop is at Nana Deb's house. She has learned that she likes to watch Regis and Kellie in the morning before her nap. Lastly, she has learned that looking out the window in the truck is fun and makes her sleepy.

For a little person she has learned a lot!