Birthday Boy!!!

Happy Birthday, My Sweet One!

I cannot believe that Christopher is actually turning one on Monday. Just yesterday, we were looking at all 3 pounds of him in the NICU. Today he is crawling at lightning speed and cruising around the furniture like a pro. He has words - mama, dada, byebye, ba-ba, and he makes the greatest car sounds ever. He pitches fits just like a big boy and idolizes his brother. He still cuddles up next to me when he wants his ba-ba, so I have moments of baby time with my little cutie. We are looking forward to his celebration tomorrow. It will be lovely, just family, friends and my sweet boy.

Mac N Cheese and Brownies

Christopher has found new joy in food. He recently discovered the excitement of peas and carrots. He savors each bite of Annie's Organic Rice Flour Mac 'n Cheese. He squishes each morsel of green bean in his chubby little fingers. He didn't know what to think about Betty Crocker's GF Browines. But this makes mommy happy, because she loves them and she doesn't mind sharing them with him. :)

Planning for his party

I cannot believe that my baby is turning ONE in a week and a half! I have a lot of planning to do. I need to come up with a menu and start trying gluten-free cake mixes for his smash cake. Anyone have a favorite mix? I am willing to take suggestions!

Bell Center, here we come

We are turning in Christopher's application for the Bell Center. He needs help with his feeding issues. He gags on almost everything. He might not even be choking at all - the food just gets on a place on his tongue that makes him uncomfortable. It's getting out of hand and he needs oral motor help. I am hoping that they can give him the help he needs to overcome his eating issues. Poor baby gagged on baby food today because it had chunks in it... Silly boy.

Happy Mother's Day to ME!

Paul and I took the boys to eat at Golden Rule tonight for dinner. Before I left the house, I grabbed a jar of Beech Nut Corn Pudding and a baby spoon. I tossed it in the diaper bag, never dreaming that my child would even open his mouth and take a bite. He has an issue with spoons - he won't let me feed him. I don't know if it's a power issue or if he has associated food with pain and throwing up. Anyway... We sat down at the table and I opened that jar of food and you wouldn't know how surprised I was when the child opened up his mouth and took a bite! And he didn't gag! And HE ATE THE ENTIRE 4 OUNCE JAR! THENHEDIDNOTTHROWITUP!!!!!!! I am not sure if you can tell or not, but this was so major for me. It was major for him, too. When we got home he played a few minutes and I made him a 4 ounce bottle for bedtime, fully expecting him to refuse it. BY GOLLY HE DID NOT - HE DRANK IT!

Happy Mother's Day to ME!!!!

Cook Books

Thanks to Aunt Libby, we now have some fabulous ideas for our menu at home - straight from the pages of a few cookbooks that she has let us borrow. Christopher's cousin, Laura, has Lyme Disease. She also follows a GF diet! Woohoo!!!

Grocery Shopping

Gluten Free (GF) foods have become my new obsession. I love Whole Foods because they are so into the special needs eater. I kinda figured that they were our best bet for all things GF. With a little help from our friends, we have also found a great selection at Organic Harvest. It's such a great place and guess what - the owner is a fellow Celiac! That makes me smile! We are in good company!

14 pounds, 11 months old

We're preparing for Christopher's birthday and having appointments as usual. Dr. K is very concerned at why Christopher is not gaining when I am packing calories into his bottles. By my calculations, he is getting close to, if not more than, 200 calories in each 5 oz bottle. This baby should be a Sumo wrestler. He should have fat rolls all over his body. However, in 3 weeks time, he hasn't gained one ounce! He still measures at about 26 inches. WAY off the chart for a near one year old.

 Dr. K orders a repeat ultrasound and something new - a EGD. He wants to do a scope. With biopsy.

The appointment is made for each. We are relieved when the ultrasound shows nothing. Nothing is good, but we need answers.

On scope day I am worried that we will find nothing here, as well. Nervously I pass off my itty bitty baby and wait the 15 minutes for the doctor to come in and share his findings.

Dr K is back in the room in no time with pictures to share. The esophagus showed classic signs of reflux - which we knew about. His stomach looked normal - good news there. However, his intestines showed classic signs of celiac disease. The tiny villi that are supposed to line the intestine and carry nutrients to his body are not there. The intestine is flat and white. We must wait 2 weeks for the biopsy results, but Dr K urges us to go ahead and start a gluten free diet. I am SO relieved to know - some clue into his vomiting, stinky and loose diapers and very slow weight gain and growth. And this begins our story with our CELIAC BABY.

Still tiny....

As the weeks and months went by, we cheered any weight gain in our little boy. Getting to 12 pounds made me want to throw a party! However, at each weight check, the pediatrician scratched her head and looked a little more concerned as time passed. Why was he having such a hard time with weight gain? We increased the scoops in each bottle. We saw Dr K who gave us a can of DuoCal to add fat and calories. Increase? Yes. Enough? No.

I need answers! Why is he throwing up? Why is he refusing the spoon? Why won't he grow when he is able to do such awesome physical things - like walking - he's starting to cruise! Let me back up... the vomiting. I don't think I made that clear enough. I never dreamed that I would ever become used to being puked on. All over my clothes, his clothes, our furniture, our floors... this baby had become a champ at gagging and throwing up. For weeks - months, really - he had been throwing up once or twice a day. WHY???

Blood work. Results?

Guess what. Results back - no allergies. He tested 4 things... wheat, soy, corn and hummm what was the fourth one??? Anyway - no allergies. I was happy to know he didn't have an allergy and that the new formula was helping anyway.

Allergies?

Dr K certainly helped with the acid reflux issues - even scheduled Christopher for an ultrasound and a barium swallow to check to see how severe his acid reflux was. However, he still struggled with feedings and tummy troubles. I suspected an issue with his formula, but I didn't know which one would be best for him. I scheduled an appointment with yet another doctor - Dr C - an allergist. Do you know how hard it is to find someone that is willing to stick a 6 pound baby for blood tests? I do. We went all over town and finally ended up with the wonderful women at Children's on Acton. They were all so sweet and willing to do the dirty work - necessary for finding out why my little babe might be struggling. Blood work was shipped and we also had a suggestion from Dr C to switch formulas. You know what? The new formula helped so much - within 24 hours we saw results!

Our first appointment with Dr K

Christopher and I were both so happy to be somewhere that held that promise of answers. Christopher howled as loud as he could, as if to beg for help. Even the little picture that they took of him is awful - wide mouth screaming. Dr K told me the ends and outs of dealing with a premature baby, acid reflux and what I could do to help. I was happy to have someone willing to listen and help me help Christopher. We got a list of medications for acid and his "pooping problem". Off to the pharmacy!

Painful feeds from the start

Even before the hernia surgery, Paul and I noticed that Christopher was having a very hard time with his bottles. He wouldn't take the typical amount most babies would in a feeding. When he would eat, he cried. It was a painful cry, too. I was in pain mentally as my baby was in pain physically. I couldn't help fight the feeling that something was going inside and I had to find out. After repeated discussions with our pediatrician that took us nowhere, I searched for a pediatric gastroenterologist. After a quick search by phone and reading a few positive reviews, I decided to call Dr K. He was able to see us in just a day or two and I was looking forward to getting some answers.

Really? Honestly? What else?

We came home with tiny Christopher in June, 3 weeks after his birth. He was SUCH a great baby. However, just a few days after his discharge from the NICU I noticed a problem. He had a very large lump in his groin area. I immediately knew it was a hernia. After showing Paul, we both decided to take him to the Children's Hospital ER. I cannot tell you how frightening it is to take a premature baby into a nasty, germy ER. I cried like a baby at the thought of sitting in there with him. The ER staff pitied me and tiny Christopher and called us back ASAP. After some questions and a visit with a doc, we were told he did indeed have a hernia and they set up an appointment with a urologist. We met with doctor H at Children's on Acton. And decided to schedule surgery - sooner rather than later - at the risk of something serious happening and me going crazy worrying about him.

Christopher's Birth Story... May 24, 2009

Christopher's Story

For a few days I just felt miserable. I was huge, hurting and exhausted. I was having dizzy spells and sciatic nerve issues. I just had a feeling something was going to happen, so I paid all the bills and made sure my bag was packed.

Sunday morning (4 am) I woke and went to the bathroom. I noticed fluid before I started peeing and thought it was very strange. I called the on-call doc and he said that if it was my water breaking, that I would know - it would be a lot of fluid. I went back to the bed and tried to relax. An hour later I still felt like something more than normal discharge was happening. I stood up and all of the sudden it happened. Major fluid and then gush - water everywhere. I started getting things together and called my mom to baby-sit. I was packing my bathroom stuff and noticed that the fluid was specked with green - miconium. Uh oh.

We arrived at L&D and met with the on-call doctor. He knew with the miconium and dipping heart rate that it was time for a c-section...in an hour. It all went by super fast and I was on the table in no time. They started the surgery and found that Christopher was turned in the worst way possible to deliver - transverse with his back facing doc. Let me just tell you - it took a LOT of work to get him out. It took much longer than expected, too. It seemed he pushed and pulled for maybe 5 minutes - no joke. I started crying and was so scared. I started to throw up with the stress and my low blood pressure. The room was quiet...all those people and totally quiet. Paul was so strong - he kept telling me everything was ok - even though he didn't know if it was. They finally delivered Christopher and he was not making any sound (which I kinda figured, since they wouldn't want him breathing in with the miconium). He was whisked away in minutes and I got just a brief glance at him. He was beautiful.

The doc told me a little of what had happened - his bad placement and the issue of having had my water break made it very difficult to get him out of the sac. Also, my placenta was falling apart. Then he showed the knot in the cord. A true knot. Oh, Jesus. Thank you for the gift of this baby - so close to going to see Him. Thank you, thank you, thank you!!!!

I went to recovery and baby went to the NICU.

I was foggy with the next events - mainly the normal getting meds and baby getting hooked up to all those machines and cords everywhere. But everything was going to be ok. Thank God.

Anyway - it's all a little overwhelming, but Christopher is doing SO well. I am guessing he'll be home in a matter of a few weeks. Can you believe it??