Getting this off my chest...

Some things I wish I could shout:

-No, I don't want to hear how my baby is a peanut
-No, I don't want your opinion on whether I should consider another one
-No, I don't need to hear your advice about raising my kids

Some things I am thinking internally:

-Should I consider filling the prescription for meds for PPD?
-Is Truman too little? (Added stress b/c as the person feeding him, I feel responsible)
-Is Truman on track developmentally? Will he have SPD? (I think this anxiety comes from having preemies and CONSTANTLY looking for them to reach milestones, etc.)

Thanks for letting me vent. I know some of it is irrational, but I need to get it off my chest.

32 weeks 4 days

Today is the day that I delivered the boys. 32 weeks, 4 days. I have been an emotional wreck, honestly. I cannot help but think about what I was doing at this time, the last time around. I am so thankful that I have made it this far in my pregnancy. So far, things have gone pretty well. I've got varicose veins, I'd be lying if I didn't tell you I've been so tired I can barely walk some days, but it has been NOTHING like it was this time, last time.

I am so glad that I am writing this post. I have been trying hard not to be anxious. Tomorrow I will be the most pregnant I have ever been. Hoping tomorrow starts a new day, and less worry.

surgery, again

Well, the ENT confirmed that Jack needs surgery ASAP, so he'll be having surgery to cauterize his nose on Tuesday. Say a prayer for my little guy. I am praying it is easy, and we have no nosebleeds between now and then.

This is his third ENT surgery! I think they're going to put his picture up in the office and name it after him! LOL!

Why am I so scared of the "A" word?

I started taking a class online about Autism, and it's like watching home videos of Summy as a child. (By the way, the modules are FABULOUS and free, and I highly recommend them to anyone wanting to learn more about Autism. Find them HERE.) It's led to tearful nights, and arguing with myself, and a lot of uncertainty. I just don't know if we should push forward to meet with someone about it or not. About 6 months ago, we expressed our fears to the boys' EI teacher, and she asked us this question: "If Summy is diagnosed as Autistic, will it change what you are doing now?" The answer is a resounding no. However, I can't help that nagging feeling that returns: what if we should be doing more?

(By the way, as a special needs parent, you are ALWAYS asking this. Hell, any parent, really.)

With the advent of the new DSM, Asperger's and other "types" of Autism will go away and Autism will be diagnosed on a scale of severity. Hopefully too Sensory Processing Disorder will be an official diagnosis as well. (Support that cause HERE) I guess I am left questioning: what is it? Sensory Processing, or Autism too?

SPD parents out there, do you find yourself ever asking this question? If you have a child on the spectrum, when were they diagnosed, and what triggered you to speak with a specialist?

Surgery for Jack

Just wanted to tell you that Jack will be having surgery on Feb 23rd. He'll have another set of tubes placed and his adenoids removed. While the surgery is not too scary, any time a little one has to be under anesthesia, it does give me a little concern. Please say a little prayer for Jack a week from Tuesday. We have a busy week here with their birthday, starting preschool, and the surgery.

Thank you as always for keeping us in your prayers!

Breakfast in bed and the night before IEP...

This morning the boys had breakfast in bed. The last few weekends we've been snuggling together in bed in the mornings as a family, and today we decided to let them eat breakfast in our bed. They were SO excited!




Tomorrow morning is our IEP meeting. Tensions are already high and I have this knot at the bottom of my stomach. I want to make sure what we come out with is a document that serves our boys in the best way possible. Even though I am a teacher, sometimes the IEP-ese confuses even me a little. (David feels lost.) It can be really hard reading an outsider's perspective on your children.

Please say a prayer for us tomorrow morning. I'll report back from the other side...

Anxiety

On Thursday at daycare, Sumner coughed on his own phlegm (he had a cold) and spit up. What seemed to be no big deal quickly spiraled into a huge source of anxiety for him. He spent the whole weekend obsessing about going to the hospital, throwing up, ruining his clothes, and a lot of other really out there thoughts. He rehashed incidents in the last 6 months where he threw up or was sick, and even cried this morning on his way to daycare because he though he would get sick there.

Anxiety is something the psychologist brought up in the evaluation of Sumner that we just completed recently. My heart breaks. Sometimes I wonder: is it all sensory based? Could he have anxiety issues too? He is literally fixated on the fact that he might be sick again, and cannot stop worrying about it. It breaks my heart and I don't know what to do.

As a child, I can remember going to the school psychologist to talk about my worries. I worried about everything, and I had picked a hole in the wallpaper of my bedroom and I told it all my worries. Maybe Sumner takes after me and got some of my worry? I have never had an anxiety attack, or full blown panic, but I definitely worry more than the average person.

Have any of the moms out there had a child diagnosed with anxiety issues? I'd love to hear your thoughts.

Elephant in the room

We are, in 3 days, going to be officially TTC for a third child.

I know I made a cryptic blog post a few days ago, and here's why: I started this blog to document a pregnancy after our struggle with IF. The last go-round, we didn't say a word to family or friends about all the treatments, cycle after cycle of BFNs, or anything else. I was afraid of what people would say to me. In that time, I wanted so bad to have a shoulder to cry on, someone to carry my burden and pain for just a few steps. Someone to talk to. 3 1/2 years ago, blogs were fairly new. I could have posted about anything knowing that probably only a few people would read what I was saying. Now, not so much. I use this place as an outlet. I need to be able to post about us TTC without feeling like I have opened myself up to scrutiny.

This blog is read by family, friends, neighbors, and many other people. I want this to be a place I can openly talk about TTC #3 after unexplained infertility. If we go through treatments, I want to be open. I need your support. But please keep your criticisms to yourself.

A family member who I just shared the hope of TTC #3 with told me that he didn't think we should go through any medical interventions this time around. That God would give us a third child if he chose to. This is what I don't need. This is what I fear.

I am so scared. Crazy scared. I lie awake at night with the "what ifs." What if I have another preemie? How far would we go? When should we look into ART? Our OBGYN only wants us to try for 6 months this time around. We could be doing IUI cycles this summer. I am scared. Would I trigger again with two follicles? What if I have another placental abruption?

I hope you understand. I hope I can be open here. I hope you respect our need for privacy with my need to use this place to document my feelings as we begin this process again. Thank you for always being there for me when I need it most.

He's still sick...keep the prayers coming!

Still has a high fever. He's only perky enough to walk around a little bit a few times this morning, after a good dose of Motrin.

I'll update. We're hoping for some lab work to come back this afternoon.

Keep them coming!

prayers needed for Jack

I don't ask often, but I need you to pray for Jack. He started with a fever on Monday night, and has been sick this whole week. Last night we were late for Thanksgiving dinner because he woke from his nap with a "neurological incident" that led to him having tremors for an hour. When I took him to the pediatrician today, his fever was 105.

They ran some tests today and we'll have to go back Monday and run bloodwork on him if he still has a fever. I'd appreciate any good thoughts and prayers you can send our way. Jack this sick is scary.

OCD; anxiety; going gluten free; and other things I worry about, in random order.

I am worried that Summy has anxiety at the least, and OCD at the most. He's developed a new thing: constantly wanting to wash his hands. It seems to be triggered most by him becoming anxious. Shaving cream, paint, and messy food exacerbate it. Today at therapy, he painted with Cake. (our OT) He seemed to be doing great, but by the time we got to the car, the meltdown began. Some nights at dinner he'll ask to wash his hands repeatedly. In this time of h1n1, I'm not sad he likes to wash his hands, but I am petrified when as soon as he dries them off, he asks to wash again. He is insistent. I am afraid.

Perhaps it is anxiety. I can tell you I have a lot of anxiety about it. Anyone out there in SPD-land, or general parenting-land have any insight or stories/thoughts to share?

I talked a little to our OT today about going gluten/casein free, probiotics, yeast kill-off, and other dietary things I have been tossing around in the last few weeks. I'm not going to lie, I am overwhelmed. We're getting ready to start the boys back on their listening therapy routine. I read a lot on my lists about people who swear by it. I discussed seeing a DAN doctor with my OT. I am honestly not sure I can actually do it. I feel pulled to the limits right now, I cannot imagine more. But I am scared I am not doing enough.

I'd love to hear your thoughts!

Did I speak too soon?

We went to the beach yesterday and the boys really struggled, sensory-wise. Jack squirmed and cried "I NO YIKE the water!" and wouldn't even stand in it. (If he had his way, I would have carried him around the entire time we were there) Summy was hesitant as well, and spent a lot of the time laying in the beach tent with Nana and playing with a truck. They both seemed to enjoy me digging a big hole in the sand for them while they jumped in and out of it. Jack also helped me dig a little with his hands.

I am worried, I won't lie. While we've done a great job with the listening therapy, we've not been as good about the brushing while here. Did that make the difference? Have they not had their sensory needs filled as well here, and outside of our therapy sessions? The nagging fear of the regression and the sadness have come back a little. I just stood and watched the other children there on our last visit and saw how happy they were; swimming, digging, body-boarding. I felt so sad to see the boys struggling so much.

We decided to take a day off from the beach and see if it helps a little. I'm hoping tomorrow goes better. The joy of seeing them so happy in the ocean and how much they enjoyed the water and beach in general was so amazing . I hope we can capture it again.

Meeting

Thursday morning I met with our OT and some of the DCBDD staff to talk about what progress Summy and Jack have made with the new model of therapy delivery. David had really wanted to be there, but had to work/stay home with the boys. The meeting went well and it really shocked me to watch the first tapes of the day the boys were evaluated. So much has changed. I shared my fears in the meeting that after the therapy burst ends, the boys will regress. I feel kind of greedy because I feel like with all the progress they have made, I want to do more. Next week they are on break and then we have 2 more weeks left in the burst. I know that when the burst is over, we'll be so busy...both with PT and possible speech evaluations, and also with school starting and getting "back into the swing of things." I also know we'll continue to do the things the boys have been doing in therapy at home. We'll be getting a trampoline, swing installed in our home, weighted vests and tons of other equipment. The boys will have a few more weeks of listening therapy. (6 weeks total) Also, they'll start a weekly muscles and messes class with "Cake" that should help to continue where we've been working. We'll also have evaluations at 3 and 6 months. Soon, they'll begin the intake process with the school district.

I worry though. (Geez, you know me, readers!) Will they regress? What will happen with the school district intake? Will one qualify for services and the other won't? The cost of two kids in private therapy could be enormous. Would our insurance pay?

I know I need to let what happens happen. I feel like I was asleep to what was going on with the boys, and now I've woken up. I feel like I want to go go go and tackle this full force. I know that's what we're doing, I just wish I could do more.

A girl recently posted on my message board about how some parents were taking their children to China to have stem cells injected into their eyes to help counteract a disease they had which would cause their kids to lose their sight. The treatements were not monitored and had little research to back them. Part of me understood the horror, part of me felt deep sadness for these parents, and part of me understood. As a parent, you'll do anything if it gives you hope.

I want to do as much for them now as I can. I want them to be able to have friends, play normally, and be happy kids as they get older and start school. I want them to enjoy the sand in their toes, the wind in their hair, and finger paint. I hope they can.

Diagnosis

After our meeting today we planned out the therapy the boys will begin tomorrow. They have both been officially diagnosed with Sensory Processing Disorder, I'll let wikipedia say it best:

Sensory Integration Dysfunction (SID, also called sensory processing disorder) is a neurological disorder causing difficulties with processing information from the five senses (vision, auditory, touch, olfaction, and taste), the sense of movement (vestibular system), and/or the positional sense (proprioception). For those with SID, sensory information is sensed, but perceived abnormally. Unlike blindness or deafness, sensory information is received by people with SID; the difference is that information is processed by the brain in an unusual way that may cause distress or confusion.

SID is its own diagnosis, but it can be linked to other neurological conditions, including autism spectrum disorders, attention deficit disorder, dyslexia, Developmental Dyspraxia, Tourette syndrome, multiple sclerosis, and speech delays, among many others. The meaning of SID falls under the DSM-IV criteria for Asperger syndrome. [1]. There is no known cure; however, there are many treatments available.

Diagnosis is increasing by developmental pediatricians, pediatric neurologists, and child psychologists. While it is not included in the American Psychiatric Association's Diagnostic and Statistical Manual as a discrete diagnosis, Regulatory-Sensory Processing Disorder is an accepted diagnosis in Stanley Greenspan’s Diagnostic Manual for Infancy and Early Childhood and the Zero to Three’s Diagnostic Classification.

Sumner is a classic avoider and Jack is a combination seeker and avoider. We begin groundbreaking research by a local practice tomorrow that will give the boys a new therapy delivery system of bursts of intensive therapy, followed by lulls. The belief is that with the intensive delivery of therapy, they won't need a "booster shot" for a long while.

I am a whirl of emotions. It breaks my heart to see Summy alone, lying on the floor playing with his truck, or scared to swing or slide, or pacing a "loop" to calm himself. I was so scared he was on the autism spectrum. While this diagnosis is like a huge light going on, it's also a scary thought: SPD is not yet "officially" recognized as a diagnosis for insurance purposes. (Go HERE to sign the petition!)

And then there's Jack. Our little Jack who has flown under the radar since we got his feeding issues "under control." I watch him fall a million times a day, get hurt over and over, and not be able to stop himself, or really even have the fear of the jeopardy he puts himself into. My heart breaks again.

I cannot wait to see my boys on the other side. We will evaluate after the therapy burst for the other issues going on which will wait to be addressed (gross and fine motor delays, and speech delays for Jack) All I can tell you is that after the week of evaluations, during our time especially spent with "Cake" as the boys lovingly call her, Summy went down the slide for the first time ever. He shook, and looped, and did all his calming behaviors, but by golly he did it.

A weight lifted, a weight added, but such is the life of a parent.

We also found a (used) swingset for the boys tonight. We hope to move it in the next week or two.

Busy busy day!

It was a rough day today! The rundown:

Jack had his allergist appointment this morning. They ran the pinprick testing on his back and the good news is that he has no food allergies. The bad news is that the doctor ordered a blood panel to check for penicillin allergy.

The pipes froze in the garage and burst

I spent approximately eleventy billion minutes on the phone taking care of a ton of stuff

Jack's ENT appointment was scheduled a week from Thursday

Our car needs repaired

and Jack had to have blood drawn this evening. One of the saddest things I've had to go through since the NICU. He inherited my tiny veins so it took a very long time to get the blood. I had to try really hard not to cry.

Tonight I go for my first therapy session to deal with the labor and delivery and placental abruption. Please wish me luck, I'll let everyone know how it goes.

Milestone woes

I feel like the boys babyhood has been thrown upside down in the last week. So far, since school has ended I have:

-moved them to one nap
-taken away their sippies with soft spouts and given hard plastic spout no handle cups
-not given them a bottle anymore b/c they are now only nursing
-been trying to get Jack to walk (he took 4 steps in a row last night!)

I still want to try giving them whole milk to see if they will drink it, and get them to drink milk from a sippy. (They still won't take EBM or anything but water and juice from the sippy.) Also, I am on project walking kids. The daycare won't take them unless they are walking, and so I am completely fixated on their lack of walking.

And I am not ready to stop BFing. I think I am returning my hospital grade pump, but there really isn't a need to have a pump as I can nurse them anytime at home now that I am off for the summer. But I feel paranoid and like I need a pump just in case. I don't know what the "in case" is for, but I worry...so I am thinking about buying a PISA. David and I had a big talk about breastfeeding which led me to cry when he said "they eventually have to grow up." Maybe I am not ready for that? I feel like I will know when it is *right* to stop, and I just don't feel that way yet.

So I spend my days now consumed with the concept that my kids will never walk, and wondering when exactly the right time is to stop breastfeeding them. I am torn...I want them to grow up, but I don't. These milestones seem like big steps towards "growing up."

Lately, the boys seem so much older, more like toddlers than babies. Between Jack feeding Summy yesterday, both of them taking "phone calls" on every available object they can crook in their neck, and how awesome they have been doing the past 2 weeks with eating only solids, I feel so bittersweet.

So the moral of this post? Being home from work for the summer=worrying mom!

Worry

The worry eats away at you when you are a preemie mom. It never goes away. I know moms worry, but I am sick with it.

Sumner's head hasn't gotten any better. God, please help me not to worry.

The boys aren't eating well at all now that they are back at the sitters. Especially Sumner. He's also back on a nursing strike. When I weighed him tonight, the scale read: 16.75. God, please help me not to worry.

Sumner isn't bearing weight on his legs still and the therapist worries b/c he lacks core strngth and isn't crossing the midline a lot. God, please help me not to worry.

I am so worried.

Jack is a trooper!

Our appointment today was frustrating and good. We got there 15 minutes early which I thought was an accomplishment, but they made us wait and wait. Jack couldn't eat for 4 hours prior so I had timed it perfectly...so eventually I caved and had to start feeding Summy. D came from work and sat with me and fed Summy, and finally at noon (our appt was 11:40) I got up and told them they'd better take us b/c Jack was getting frantic hungry, and we couldn't wait any longer. They took us back and the tech and doc told me they'd been waiting for us too and it made me even madder. I guess they had to print labels and that was what took so long...you'd think the info'd be current from them being in the NICU 2 mos. prior. ARGH!

Jack was so cute, he wore a tiny baby hospital gown with pigs on it. He ate the barium down fast and it was really neat to watch on the screen. All in all everything looked AOK, and there were no herniations or pyloric stenosis. Good news! The doc was a little concerned about him barfing up 9 am meds at 3 pm, but said everything looked good. He didn't reflux (I gave him the am Prevacid dose) and the doc later told me I wasn't supposed to, but no biggie. We already know he refluxes.

So good news. I'll be interested to see what the GI doc says. No word yet on when that appt. will be.

Pictures and Therapy issues

Hello all!

We had more pictures done with Rachel http://www.finelinesphotography.com and they turned out really wonderful! I can't wait to post some as soon as she is finished loading our gallery. It was a beautiful day, and while the boys didn't smile as much as I wished they would, they cooperated by mostly staying awake!

In other news, we are really frustrated with our attempts to get feeding therapy for Jack through the state. Our evaluation in April got stalled by some people who weren't doing their job, and only a phone call to the governor's office last week by me got anything moving. Unfortunately, we are stuck again, this time at the county level. Jack's been waitlisted through our local county board of MRDD for his therapy...no idea how long the wait will be...right now I am waiting for calls back from numerous people. I am so frustrated that it is this hard to get therapy for a low birth weight child who is having trouble gaining weight! It's sad and scary. I'm angry because it makes me wonder what happens to my tax dollars when I can't even get help for my infant son...who can't speak for or defend himself! So difficult!

Yesterday marked the end of my 3 days back at school (2 with kids, one work day.) It was bittersweet to be back: it was lovely to see the kids and my coworkers, but very difficult to be away from the boys. I am nervous to imagine what fall will be like.

Friday is our 4 month appointment with the pedi. I'll post stats here, and give another update then.

Sorry it's been so long!

Sumner

Jackson

We've been busy, as you can imagine!

Jack's been struggling with his weight gain, and first was put on Zantac, then Prevacid, then the pedi doubled his prevacid and added Reglan. We are finally starting to see results! YAY! Because his medicine needs dosing 6 times a day, we've decided I will only return to school for 3 days at the end of the year to get my room put away. I am truly loving ym time home with the babies, and will be SO sad to go back to teaching in the fall!

3 month appt stats:

Summy: 9lbs 12oz

Jack: 8lbs 3.5oz

Today the babies are 3 months old! So hard to believe! The time really flies by! Enjoy some pictures!