Thursday, August 31, 2006

How many vials??

Eli went to the genetic and metabolic clinic at Children's Hospital on Tuesday. They were wonderful there despite the warning I received from our pediatrician that the geneticist was morbid and always looked for the negative in her patients. Unfortunately the geneticist also had the same frustrating answer that all of Eli's specialists have for us........Eli is an anomoly, an enigma, an entity of his own. Not that Al and I don't think Eli is special and unique, it's just irritating that a group of specialists who are supposed to figure out what is wrong with your child, can only say that he's following his own path and making his own road. The great news is that the geneticist does not think that Eli has any genetic issues! She did run a Chromosome Microarray Analysis which is basically an extremely detailed chromosome test. She also ordered a blood test for a genetic disorder which Eli has certain characteristics of (constipation, aspiration, FTT, extreme caloric needs) but does not have the other, more pertanent characteristics of (MR, microcephaly, cranial structural problems, missing digits). The syndrome is Smith-Lemli-Opitz Syndrome and she only ordered the test because it was a simple blood draw to rule it out. Eli also had growth hormone testing done at the same time to determine if his stall in linear growth in the past 4 months has been due to his FTT or to an underlying hormone issue.

Al and I finish the 2 hour appt with the geneticist with the orders for all of the bloodwork and a recommendation that his GI doctor order an endoscopy and a colonoscopy to rule out all other possible diseases. We gathered our smiley Eli and the overpacked diaper bag and hopped on the elevator to head towards the lab. Our Children's Hospital is wonderful and they are fully prepared to entertain and distract children of all ages from painful procedures like blood draws. Eli has had more than his share of draws in his short 14.5 months but when we saw NINE vials laid out on the table to be filled our jaws dropped! They took 9 full 10mL vials of blood from our boy!! He was a trooper through it all and only cried when they first stuck him. We will have the results in 2 weeks but the geneticist said she expects everything to come back normally.

Here are some pics of Eli and Carson from this week to end my post. Enjoy!

Monday, August 28, 2006

Carson's 1st Day of School

Today was our baby's very first day of school. I have been meaning to update on Carson for two weeks now but things have been crazy so this will be his "official" update post! In the beginning of the summer, one of Eli's physical therapists referred Carson to be evaluated by our city's special education preschool program due to his ADHD diagnosis and his behavior during Eli's PT sessions. We finally had a meeting with the Director of Special Education on 8-7 and set-up a multi-factor evaluation for Carson on 8-14 and 8-15. A pychologist came to the house for a 2 hour eval on 8-14 and then we went on-site to the preschool/elementary location for a 3 hour eval on 8-15. Carson did really well and Al and I were impressed with how he handled the 5 hours of testing. They observed him, tested him, had him interact with other children and alone, and had us fill out questionaires. He had to have one severe delay (two standard deviations below his age level) or two moderate delays (one standard deviation below age 3y2m) to qualify for the Special Education preschool program with the school district. Al and I were worried that he wouldn't was unnecessary worry.

We went back without Carson the afternoon on 8-15 to discuss his evaluation with the PT, OT, pychologist, SLP, and special ed director. Carson qualified for the program and received a few new diagnoses. First and foremost he now has the label of Sensory Processing Disorder which we have suspected for awhile but were surprised at how severe his delay in sensory was compared to other 3 year olds. Carson also had a severe delays in behavior, emotional, and social areas which can be attributed to his lack of experience in social environments and his ADHD diagnosis. He has a moderate delay in fine motor focused soley on writing and drawing tasks. Carson will get OT for all of these areas right in the classroom during his normal preschool day. He shocked the SLP with his language skills. By the time the speech test rolled around Carson was tired and uncooperative. He got up to the age level of 5 years old without missing a single question and then started lying to the SLP. He told her that a dog wasn't an animal and he wasn't answering any more questions. She said we could stop the test and she would mark in his file that his score wasn't an accurate reading of his capibilities and his speech and language skills were higher than a 5 year old! YAY Carson....that's our boy! The city preschool program is free for children who qualify and he gets to go 4 days a week from 8am until 11am. The bus picks him up at our house at 7:40 and drops him off at 11:35 each day. There are 11 children in his class. Seven of them are special needs and 4 of them are "typically developing" children. They range from ages 3-5. We finished his IEP on 8-18 and we are happy that he has this wonderful opportunity to learn and grow.

Now back to the FUN part......Today was his very first day of school. He was super excited last night and made sure bath time extended extra long so he could stay up late. Carson picked out a red baseball T-shirt and blue shorts to wear with his new Thomas the Train shoes. He also insisted on Scooby-Doo underware this morning. We woke up bright and early at 7 and had waffles for breakfast and chocolate milk for a special treat. He took his Adderall, brushed his teeth, put "Daddy gel" in his hair, and then put his "vest" on so we could go outside and wait on the bus. He grabbed his Superman backpack and ran outside to play on his tricycle and wait on Mr. Smith and his big yellow bus. We took loads of pictures. He didn't cry but wasn't smiling when he got on the bus. His teacher Mrs. Linn sent a note home that he did great all day and didn't cry at all. He was "busy but followed directions". Carson was happy and is ready to go back tomorrow! Enjoy the pictures now that you have gotten through this novel I've written. My baby's growing up!!!

Thursday, August 24, 2006

Home, but still fertile

My house is quiet for the first time in years. The boys are at my parents' house and I have the day to myself for some much needed recovery time. My surgery had some complications as I'm sure you guessed by the title of this post. Al and I arrived at the hospital 10 minutes late (he can never get anywhere on time!) and checked in at the registration desk. We were taken upstairs and I had the prevailed of being weighed and peeing in a cup for a pregnancy test. Two good things resulted from this: #1) I lost 3 pounds #2) I wasn't pregnant I bet the lack of eating and drinking for 14 hours and the constant bleeding had something to do with both of those :) Off to the room to get my attractive hospital issue gown and mesh underwear on. Nice. My OR was running behind so my surgery was pushed back until 2:00pm. No big deal....I could force Al to watch Days of our Lives with me while we waited. They finally took me back after a quick kiss from Al and off to dream land I went with general anesthesia and intubation.

I woke up 90 minutes later in recovery. The nurse mentioned something about my incision looking good and asking me if I needed any pain medication. I was still groggy. Incision? Doesn't she me incisions? Nope, I only had one incision about 1" right below my belly button. My surgical notes hadn't arrived in recovery yet so the nurse couldn't tell me why I didn't have the two incisions I was supposed to have or how they could have completed all three operations without both incisions. Great. I knew something went wrong.

They finally got my notes and the nurse read them to me. Tubal ligation unable to be performed due to extensive and severe abdominal/fallopian/uterine/ovarian adhesions (scar tissue). My D&C was completed successfully. The lap also confirmed the diagnosis of adenomyosis. The bad news is I will have to undergo another surgery. I will have a few options, none of which I want to choose from. The first and least invasive will most likely be an 8" incision directly above my current c-section incision in addition to another 1" incision in my belly button. They will then go in and release all of the adhesions and complete the tubal ligation. This surgery will be long due to the extent of my adhesions and I will be in the hospital for 2-3 days. The second option is adding a uterine ablation into the mix to try and fix the adenomyosis. This usually doesn't help with the bleeding and cramping from the adenomyosis though b/c it only cauterizes the internal lining of the uterus. Adenomyosis is basically endometriosis of the uterine muscle. They may choose the third option because of this reason. The third option is using ultrasound guidance to remove the parts of my uterus that have the adenomyosis in chunks in addition to the adhesion removal. The fourth and worst option is a hysterectomy and adhesion removal which I don't even want to think about at this time because this whole situation has me quite upset.

So, to make a long story even longer, I'm home and recovering from surgery. My incision was bleeding all night and I had to change bandages every 2-3 hours. It bled through my hospital gown and two shirts. Vicoden and phenergan were my friends last night and Vicoden continues to help me out today. I'm not looking forward to another surgery, a 4-6 week recovery time, another 8" incision to heal from, and not being able to pick up my boys again. I wish I could rewind time and sign some "what if" or "in case of" consent forms that would have enabled my OB to just go in and do what needed to be done yesterday while I was already under general anesthesia. I guess those "what if" and "in case of" statements have held a prominent place in my mind in the past three years. I'm heading back to the couch with my green tea and my doggie. Thanks for all of the well wishes.

Tuesday, August 22, 2006

Surgery Day....for me

Wednesday. The day I've been dreading all week. I'm sitting at my computer desk and trying to stuff my face with as much food and drink as possible because in less than 2 hours, I can no longer eat or drink until tomorrow night. Let me back up a bit and go over why I'm having surgery in the first place. With all of the events going on in the lives of Carson and Eli, I haven't really written much about the exciting timeline of my own life. I know, I know.....try not to jump out of your chairs. This may be a TMI post so if you are at all queezy around womanly issues: stop reading now.

Bleeding is something I have become quite accustomed to in the past 5 months. My ob has diagnosed my with a condition called adenomyosis which has caused me to bleed about 23-25 days out of each month. Lovely, I know. This is not just annoying spotting every now and then. It is full-on, need a tampon, heating pad, mean to your husband, cramps all the time, becoming anemic, bleeding. Yuck. So, 8-23 is my day of relief (hopefully). Too bad I have to go through surgery and get cut open to fix things.

My ob thinks I need to have a D&C and an exploratory laparoscopy to try and stop the excessive bleeding and pain as well as get a look around to make sure there are no fibroids, tumors, cysts, or polyps that he can't see or feel. I will have a 1" incision at the bottom of my belly button and a 1.5" incision right above my c-section scar. Al and I decided that since I have to go under general anesthesia and the external incisions are the same, that I will also have a tubal ligation at the same time. I have to be at the hospital at 12 for pre-op and registration and my operation starts at 1:30. Hopefully things will go smoothly and I'll be home in time for a clear liquid dinner of soup and jello. Yum. Especially after over 20 hours of not eating and drinking.

Many of you know that our ob and our peri have both recommended for us to never get pregnant again. After losing our first baby at 13 weeks, having Carson at 30 weeks, and Eli at 25 weeks, they do not believe I will ever carry a child successfully to term. We are not willing to endanger another baby's future by getting pregnant again. Our history with pPROM and preemies coming earlier and earlier is not worth having another biological child. It is a bit sobering having such a permanent decision basically made for you by your own body, but I have come to terms with closing my reproductive years at a young age. Seeing your babies go through surgeries and FTT and therapy and lifelong scars will help along these decisions. If Al and I feel that our family is not complete later down the road, we are incredibly open to adoption and would pursure that option in a heartbeat. As an adoptee myself, adoption just seems like a natural process and one day our family may take that step. For now it will be our two amazing boys, our spoiled dog Macy, Al, and me laying on the couch being pampered (hopefully) by them all after my surgery. Chocolate treats, good books, and a nice blanket will all be accepted at my house tomorrow evening :)

Saturday, August 19, 2006

A new preemie angel ~i~

Today a wonderful woman from one of my on-line preemie groups lost her daughter after a 8.5 month long battle in the NICU. Collene was a fighter from the very start. It is a sad day for all of us and our hearts go out to you Simone. I held Eli just a little bit tighter and longer tonight before putting him in his crib for bed. Why do these angels leave this earth so soon?

Climbing: The death of Mommy

Our little Eli has blossomed into quite the little monkey this past week. He is in no way close to standing on his own or even thinking of walking BUT......he's climbing on everything! Yesterday this new found skill landed us at Children's Hospital in the ER for a lovely 4.5 hours. Carson was having a bit of a meltdown (see my post about his new diagnosis/update that I am going to write later today) so he was sitting on my lap crying and getting some "mommy time". Eli decided to take full advantage of the situation, as all onry children should, and began climbing onto the couch. He hasn't perfected this skill and ended up falling off the couch backwards and hitting his head on one of the metal legs to the computer chair that Carson and I were sitting in. Eli lost consciousness for 30-40 seconds and then woke up confused and scared. The crying began. I found a scary bump directly behind his right ear that was sticking out 1" from his head and was 2" in diameter. Off to get the ice. The crying stops. I'm running around getting shoes on Carson and the diaper bag packed with tube feeding supplies while holding Eli. I grab my pen light and check his pupils. They're reactive and equal.....thank God! He's not acting like himself. Very drowsy, not interactive, not our Eli. After throwing the boys in their carseats and the dog in the front seat, I call my Dad to let him know Carson and Macy are coming over to his house because Eli needs to go to the ER.

Mommy overdrive is on but Nurse Mommy thoughts won't quite going through my head. What if he fractured his skull? What if his already mildly enlarged ventricles are damaged or have bleeding from the injury? Concussion? What if? What if? The combo of being a mom, a preemie parent twice over, and having medical knowledge can be grounds for a heartattack in certain situations! But I was calm, cool, and collected on the outside.

We get to the ER. The triage nurse asks the normal questions..... Medical history? do I make that short? What happened? He fell....then I tell the whole story. He lost consciousness? Yes. Any vomiting?, he is unable to vomit due to his Nissen fundoplication. Oh yes, you did say that. We'll get him right back.

It was then that I noticed the petechiae (they are tiny purple/red spots that are hemorrhages in the skin) that had been on his neck for the past few days had spread all over his neck and all over his face. Great. What does my child have petechiae all over his neck and face? At least we were at the ER and I could just ask the doctor. We get taken back and they order a CT scan to make sure he doesn't have a skull fracture, brain bleeds, or a concussion. At least my mommy worries weren't so far off. They also order a CBC, differential, and the whole battery of blood clotting disorder tests! They are quite worried about his petechiae and want to make sure he doesn't have hemophila, other clotting disorders, or low platelets that would need a transfusion. More tests that our little man can add to the massive list he has had performed in his short lifetime of 14 months.

Eli finally started acting like himself about 3 hours and 15 minutes after the fall. Al was able to leave work and meet me at the hospital and it was weird seeing our normally happy, flirty child, not smile or interact with us or the nurses. What a relief if was when he started to laugh and smile again. He cried during the CT scan but who could blame's scary. The results were perfect! No brain bleeds, no skull fracture, no concussion. He was cleared for discharge on the head injury with just Tylenol every 4 hours and ice packs as tolerated. We were still waiting on the blood results. Al's side of the family has hemophila. Now with my medical knowledge, I know that Eli would have to be a girl in order to have inherited hemophilia from Al, but I am adopted and have no medical history of my own. This leaves a few doors open. I was worried something new was wrong with our baby. Finally the results were in. Normal. Every micropreemie parent will tell you that when the word "normal" is is cherished. We don't hear that word often. They held a conference to discuss Eli's results (it must have been a slow Friday in the ER) and cannot determine at this point why he would have petechiae. We are to watch for any other signs of bleeding in his urine, stools, or worsening petechiae.

So, our little micropreemie has turned into a monkey and loves to climb. It's strange to see a kid who cannot stand or walk, mount a couch. Leave it to Eli. If you read this far you are an angel. Eli is doing well this morning. His head is still tender and no is a nice dark shade of purple but he's back to trying to climb on the couch. That's my boy.

Wednesday, August 16, 2006

What a CHUNK!

The title says it all. Eli is now officially entering chunk territory. When Al called me from the GI's office on Monday to relay the weight stats I about passed out on the kitchen floor! We definately have found a combination of formula and massive amounts of food that will pack on the pounds for our formerly FTT micropreemie. Just 6 weeks ago I was talking about making deals to get a few ounces of weight onto Eli's already ultra-skinny frame and now he has turned into a plump, round-cheeked toddler! Okay, okay.....I'll tell you how much Eli weighs.....are you sure you can handle it??? 18lbs 8oz and 29.5" Holy smokes! He has put on exactly 4lbs in the past month and grown a half an inch. We have officially re-made the weight growth chart for his adjusted age of 10.5 months at the 5th% which is a miraculous recovery from the technically starving child he was just 5 weeks ago. His GI wants another 3lbs on him to catch him up to the 50% but we'll see. I'm just so happy to see my baby no longer looking like a refugee.

Thursday, August 10, 2006

Caffeine and Coffee

No, the boys aren't driving me insane today, least not entirely. My final for Human Nature and World Religion is due this evening at 7:30. Of course I could be the President of the procrastination Universe and I am blogging instead of diving into the depths of my inner being to create a theological masterpiece to call my final essay. Typical Kellie. Eli has been keeping me up all night every night for the past week because he feels that even though he gets fed on a continuous feed for 13 hours a night, he must eat an 8 oz bottle every 2 hours as well. The sleep deprivation is starting to wear on me in addition to the stress my professional procrastination skills have caused so I decided to dedicate a post to my new best friend........caffeine. Oh where would I be without my coffee pot and the wonderful company of Starbucks? I can smell my savior perking in the kitchen as I type. Wish me luck on finishing my world religion essay and getting Carson and Eli both down for naps at the same time!

Tuesday, August 08, 2006

Pool Pics

Here are some cute pictures of the boys playing in a clearance pool at the grandparents' house. Notice how nice and FAT Eli is looking?!?!?! I'll update in another post on the great news about his weight gain. Enjoy.

Eli update

I haven't updated on Eli so I guess I should let everyone know the great news......

Eli is finally GAINING WEIGHT!!!!!

After ther formula change to Peptamen Jr, Eli's weight has definately taken off. He is still listed as FTT (failure to thrive) b/c he is below the charts for weight based on his adjusted age ofr 10 months and his actual age of almost 14 months. Peptamen Jr. is an elemental formula. This means that the proteins and nutrients are broken down so his body doesn't have to do much work to utilize them for energy. His GI is quite pleased with his weight gain (and who wouldn't be.....he gained 400 grams in one week!). He is now up to 16lbs 4oz and is 29.5" long. He has a bit of chub back on him and we can barely make out the outlines of his ribs now. It is wonderful and Al and I couldn't be happier! Eli is also off of all of his constipation medications since being on Peptamen Jr. This is nothing short of a miracle. We have been battling severe constipation and relying on two medications, Milk of Magnesia and Miralax, for the past 5 months with no relief. This formula has taken care of the problem completely and Eli's diapers no longer have rocks in them! The only bad thing about Peptamen Jr is it's smell and taste. YUCK! It basically smells and tastes a bit like vomit. It took a bit of coaxing to get him to drink it but now he is getting at least 3 cans a day by mouth and two cans a night through his MIC-key button. This is a total of 1,250 calories of just formula alone. Then add on the solid foods he gets and the total adds up to about 2,000 calories per day.

This leads us to our next update. They still think that Eli has some sort of metabolic or mitochondrial disorder that is causing him to need such an incredible caloric intake for growth. Right now he gets the same number of calories as an average adult male. Eli will be going to the Genetic and Metabolic Disorders Clinic at Children's Hospital on August 29th for an appt and testing to see where we go from here. The appointment is supposed to last at least 2 hours once we get into the office. We will be there all day.....

So, our smiley, happy, energetic boy is growing. We couldn't be more proud. It is still a work in progress and a daily battle to get Eli to grow but we are making it. He has come a long way from the 14lb 8oz baby that he was just 3 short weeks ago. How could you not want to squeeze these chubby cheeks???
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