Saturday, February 20, 2010

Sound Familiar?

Okay all of you reflux moms, I need your help. To make a long story short, we are still battling all of this with Claire. You know from my post a few weeks ago that they put Claire on 3 or 4 meds after all of her tests at childrens. I do see that her reflux is a little bit better because she does not scream during feedings as much and is pretty happy for an hour after the feeding. BUT...she is still having major GI issues. She is not able to sleep more than 30 minutes at a time for naps or night. We know about the "45 minute intruder" and trust me, this is not it. This is ALL NIGHT LONG. She hasn't slept in months, but it's just getting worse. She will go 1 hour to 1 hour and 1/2 at most and that is on a good night. She just is so uncomfortable, clawing at the sheets, grunting, pulling her stomach in, etc. And it doesn't seem to be gas at all because we know what that used to be like. It is just something happening when her food hits the digestive track. She has been constipated for weeks now and goes every couple of days even with miralax. And sorry for TMI, but I just need advice. It's always green. We thought the nutramigen was the answer since it helped with fussiness and gas, but it is still not doing the trick once it hits an hour after the feeding. SOOOO... does ANYONE have any similar experience with this? Some sweet girls from my community group at church seemed to think since the reflux was getting better, it was probably an allergy. BUT we cannot have an allergy test this early. Is there any other formula that would be better than nutramigen or the similac version alimentum? We are just wondering if anyone has any experience and maybe could enlighten us. We are at 4 1/2 months and it is so sad to watch her in pain so much and I'm really losing it with no sleep trying to take care of two kiddos! Poor Chris doesn't even know me at the moment! So I just thought I would throw it out to the blog world because surely somebody has either heard of this or been through it. In the meantime, please help us pray that God would heal this (of course in His timing and not mine:) and pray that we can stop the meds, the search for the perfect formula, and remember what getting sleep feels like! :) Thanks for all the prayers so far! Keep them up! We do go back March 1st to the GI and the next step will be to do an endoscopy where they put Claire to sleep to put a tube down her, and we would also spend the night at children's while they run test all night and watch her sleep, toss and turn. So any advice?

Sunday, February 14, 2010

Let it Snow, Let it Snow, Let it Snow!

Claire LOVED her first time in the snow. She would smile when it hit her face! It is amazing how much we see smiles out of this little one who feels so rotten all the time. Nighttime is a true nightmare for all of us, but we do get fun moments at times throughout the day. Wells had a blast playing in the snow! This was the perfect snow day since it didn't mess up the roads, it didn't create power outages, and we all got to play in it! So fun!!! Below is a picture of Wells' first snow on March 1, 2009 and Claire this year. He was 7 months and she was 4 1/2 months. I just thought it would be fun to compare the two pics! I love that they have their own "look" but still look like siblings. We hope you had a great snow day as well!!

Monday, February 8, 2010

Mother of the Year

I win!! Yeah Right! Before I get into that, Let me update you on Claire's tests and GI appt. today. Thanks so much for everyone's prayers, texts and emails about it. We got some answers thank the Lord, now we just need to get it fixed. And many thanks to my sweet friend Kathe Patterson who went with me! Her son had this when he was a baby so she knew what to do, where to go, and what to see on the screens. There were no problems with her organs and they did intensive xrays and ultrasounds. They did see tons of gas bubbles and acid in the tummy. Then we had the Barium swallow test. It was soooooo sad. She screamed bloody murder as she drank on her back. We watched the liquid "constipate" as they put it and then travel right back up her esophagus. The liquids went all the way up to the throat. The ladies replied "wow...major reflux, poor girl". And they do these tests all the time! So it broke my heart. She has been taking some reflux meds and they haven't done any good. So when we went to Dr. Mestre to read the results and after many hours of waiting, he said we need to address four different situations going on. 1) Try different reflux medication 2) put her on buthanicol to get her digestive track moving all the liquids down instead of coming back also deals with all the acid. 3) miralax in one bottle a day for constipation and 4) some other medicine to be the bandaid to coat her stomach while she is on all these meds. We are praying all of this will make a huge difference if I can remember when to give her all these meds. If not, we go back in three weeks for and do more intensive tests where they put her to sleep. So PRAY that these meds work. Poor baby....I just can't stand to put her on all this medication, but I also want her to feel well. Now i know why she screams all the time. She has TONS going on. She still has fluid in her ears as well, but that appt. is Feb 25th. So much going on with poor Claire. But after being at Children's all day and seeing some of the kids and what they are going through, it made me so thankful that she didn't have anything worse.
Now onto being Mother of the year... so with all of this going on I caved and went to Mcdonalds for Wells and he LOVED it. Devoured the whole hamburger!!! So I said I would never go there with him, and now I'm doomed. But here's the best Claire had already wet through one outfit on the way to the hospital. So I changed her into this precious warm outfit. After all the tests, the nurses said "Be sure she has a bowel movement in the next two days to get all of this out of her system and if not, go to your pediatrician." So I am praying for this since it's been so hard for her to go to the bathroom period. I hear her all the way to the GI and say YES! And then the smell is HORRID! So as I walk into the doctor, people stare because she smells. There was nothing I could do until we went into the room. So we get to the room and I take her out of the seat and it was disgusting!!!!! Mess all over her, it, the pacis, etc. Then I realized I only had four wetwipes left. So the nurse gives me a look, but helps. I get her all cleaned up and I almost puked. She is smiling the whole time. Then I go to the bag for a new outfit and realize that I already used it at the hospital!!! After the doctor came in and it was time to go, he and the nurse said to get her dressed and head home. So I told the nurse I would get her dressed and be right out. So I quickly got her into her nasty seat, wrapped the blanket around her the best I could and ran out of there! Yes, it was freezing out, and yes, she looked at me like I was crazy, and yes, I laughed all the way home. So yes, nominate me for mother of the year and check out the pics below! Wells is loving life with his "Hamburder" and Claire looks just thrilled with me, right?! As my friend Sarah put it, "Hey, at least she has on a hat!":)

by the way...can you tell i'm ready for SPRING with this blog design!!!!

Monday, February 1, 2010

Happy 4 months and 18 months

Yeah! We are now 4 months and 18 months! And I am praying that these two continue to love each other this much as each month passes. Wells always wants to "see me", which means he wants to hold her! I would LOVE to say that things have gotten so much easier and we are just sleeping all the time! But no way!! Claire has backtracked! She is now waking up every hour ALL night long. So reflux and colic are still in full swing. She is getting better during the day though and we are having lots of fun! She seriously smiles the entire hour after she eats. It is precious!!! She loves looking at herself in the mirror and pulling on toys. She looks ready to roll over, but right now she stops on her side. Naps still aren't the greatest, but again...hopefully we'll what is going on soon. We are going back to get x-rays, take a barium swallow test, etc on February 8th. We will see if more is going on.

Now onto Wells! He is a ball of fun. Temper tantrums are in FULL swing, but we try to focus on the fun times!! He loves to hide and have us find him, he loves to get into the cabinets, he loves to kiss us and his sissy and he is ready for spring!! He stares at the door and longs to go outside and play. I am quite ready myself! All these colds, viruses, and being stuck inside is making me stir crazy!

I was able to go on an amazing women's retreat this past weekend and it was awesome!! We left friday afternoon and came back saturday afternoon, but it was packed full of fun times with girls, tons of laughs, and lots of truth from our speaker, Frances Worthington. She was awesome!! It was all about thriving and not just "surviving". This is EXACTLY what I needed. My response to people when they ask "how are you doing?" is usually "we are in survival mode!" I am tired of saying that and really want to be able to be positive and be a light despite how tired I am. So Frances just brought us back to the basics of getting into God's word DAILY and really learning how to thrive each and every day. What a blessing that 24 hours was!! Thanks mom and dad for keeping Claire and thanks to Chris' parents for keeping Wells so that Chris could get a good night's sleep as well!