Friday, December 30, 2011

Forever

Jackson grab that lunch box to take your lunch to camp today.

This one? The Toy Story one?

Yes

Is it mine?

Yes.

To keep?

Yes.

To keep forever?

Yes. Forever and ever.

Chim chim che-roo

I always did wonder how Bert and Mary Poppins knew each other.

Well, Bert is a scallywag.



Wednesday, December 28, 2011

December Update

I have been waiting to put together an update because Eli had his Echo, EKG and two month appointment today.
To catch up, Eli had his SoonerStart assessment last week. It was quite a process and exhausted him (and me!).
While he has made a lot of progress physically, like being able to hold his head up when on his tummy, he still ended up qualifying for SoonerStart care. He does not display a few reflexes, particularly the walking reflex. While he did not track for them (he has for me at times at home) he did however show excellent hearing. They will begin coming to the house in January for therapy sessions. In the meantime, we are to start working on grasping, reaching out, smiling, tracking and more tummy time.
Eli also had an extra appointment last week at the pediatricians due to an infected tear duct and a herniated belly button.This kid cannot catch a break. On a positive note, while getting some drops for his eye the doctor and I discussed his spitting up and constant crying. She gave us a script for Axid to help with the reflux. We started it Friday night and so far it has seemed to help. He still spits up. A lot. But his moments of painful crying have become fewer while his sleeping has become less fitful. Hopefully we are on the right track digestively.
Thursday of last week, Eli had his follow up chest x-ray. We are happy to report that the radiologist and the cardiologist both said the x-ray looked clear. This was a huge relief for us, as Eli continues to make his soft grunting noises so we weren't sure how his lungs have been progressing.
Today was the big day though as Eli's follow up Echo was bright and early. He did so well during the procedure. He made me look foolish when I told the tech how fussy he was and of course he ended up dozing in and out the whole time like a perfect baby.
He did better than I did. It's a slightly anxiety-producing procedure to watch your baby's heart on the monitor for almost a half hour. It is hard for someone like me to just stare quietly at that monitor without knowing what the tech is seeing in my baby's heart. I just kept holding in his pacifier and saying my prayers.
Eli proved me right when they took his blood pressure next. They take it from all four limbs and he was NOT happy about any of it. It was very painful and hard to get through. But afterwards, for his EKG he was back to being a perfect baby and breezed through it. I should have brought a bottle to help him relax.
The cardiologist said that while one of the holes in his heart has closed on its own, the other remains. She said about 20% of people live with this kind of hole. It may still correct itself and we will have to continue to monitor it. In the meantime, according to our pediatrician, Eli can go about living a normal life. He cannot however, ever go scuba diving.
The cardiologist also noted a bright spot on one of his ventricles. She said this is a calcification most likely due to all of the IVs,tubes and catheters he had in the NICU.
Because of this discovery, Eli will have to have a follow up Echo in February. She said she wants to monitor it to make sure it doesn't worsen.
Our pediatrician said that a calcification is basically a blood clot. She feels that Eli's body should be able to break down the clot on his own. This is what we are hoping for... and that the hole in his heart closes itself.
The doctors said it can actually take years to close on its own. I was also told that as he grows the hole will not and that it will most likely get smaller.
Eli will probably have to have yearly assessments of his heart and eventually if it doesn't fix itself, we will make a decision about repairing it.
Thinking positively, the doctors said it does not effect his oxygen levels or functioning. So I feel like today has been a positive one. Eli's EKG looked good and we will continue to keep tabs on everything else.
We wrapped up the day with his two-month vaccinations. He now weighs 11 pounds and everything went as can be expected.
A few shots, followed by lots of crying, followed by lots of nursing.
I told Eli it was ok to eat through his pain.
Hearing his cries, one would never have imagined this baby dealt with a diminished lung capacity. And while I wouldn't mind catching a few more hours of sleep, I sometimes catch myself smiling when his tiny face is pink with a raging cry because I know there was a time when he could make no sound at all.
Scream on, Eli.


Sunday, December 25, 2011

Merry Christmas


Best. Christmas. Ever.
Wishing you all the joys of the season.

Monday, December 19, 2011

Busted

Mama! Did you see that train?

No.

The blue and yellow one?

No. I didn't.

But I thought you said you had eyes in the back of your head....

Oh. Right. Well...uh... I guess I didn't have them turned on?

Monday, December 12, 2011

One Month

As if on cue for his one-month birthday Eli began tracking. As if suddenly awake, Eli has begun checking things out. He seems to notice us more and more. His big blue eyes stare at our faces as if trying to figure out who these people really are. Of course this happens for about 15 minutes and then he is back to discussing dinner or sleeping.
It takes a bit of convincing - but he does eventually sleep for a bit.
In the meantime, Eli is still spitting up a lot. He is quite fussy when it comes to eating. He is either not happy because he hasn't gotten enough, or he is grumpy because he is so uncomfortable until he spits up what seems like half of what he has just eaten. Then he is furious because now he is hungry again since half of breakfast is down his shirt. And so we start all over again. It is has been really hard to get him on any kind of schedule with this unpredictable mess.
Plus it is no fun to see your newborn so unhappy. This morning was the worst as he got so upset he spit up through his nose. Twice. Yuck.
Hopefully he will begin to outgrow this. We plan to bring it up at his next appointment at the end of the month. Reflux is something our niece and nephew both had so maybe it is our turn to deal with.
It makes for a lot of wardrobe changes - for everyone.
We try everything. Shorter meals, sitting up while eating, burping constantly, soothing white noise, vibrating bouncy seat, staying still after eating, swaying, patting, whiskey.....!
Today Eric is picking up a baby swing we found on craigslist in the hopes that this may help settle his tummy a bit more. He seems to respond to movement so hopefully this will help. He does settle once in the car for a few minutes. Getting in the car seat is not a happy thing - which I think is typical newborn. But once we get to the stop sign he has decided he might like this and begins to doze. Unfortunately we still can't drive anywhere more than a hour. After being in the seat for a while he started to choke again. I try to wait it out a bit - again hoping for self correction but he is not quite there yet.
The other night Eric had to work very late so Jackson snuggled in bed with me and Eli. Turns out he was a better helper in the night than Eric!
He would happily dash off for a diaper, an outfit change, another burp cloth (we go through several a day), etc. He loves to help and is always concerned about Eli.
When Eli cries, Jackson always asks me to tell Eli not to worry "big brother is here."
We are so lucky to have Eli home with us for the holidays. Our boys are the best gifts.

Wednesday, December 7, 2011

A Few Of Eli's Favorite Things

1. Vacuum cleaner
2. Bathroom vent
3. Hair dryer
4. Clothes dryer

Tuesday, December 6, 2011

I. C. E.- in case of emergency

Before leaving for school this morning Jackson made sure to tell me:

Mama, if Eli spits up or throws up you just call me at school. You just tell them at school what happened and they will come get me and I will come home to help, ok? You just call me.

Managing the Crazy

Well I made it almost three days.
My parents left Sunday morning and I made it until this afternoon before taking Eli to the doctor.
He has had some congestion and I swear I keep hearing him go back to making those tiny grunting sounds that he made when he was born and had such trouble breathing. Eric heard the grunting sound over the phone and I consider myself lucky to have a spouse that encouraged me to call the doctor instead of telling me I was imagining things (entirely possible we all know considering our situation).
So I took him in and the good news is that Eli is gaining weight. He is now 9 pounds. The bad news was that Eli probably does have a cold. However, the doctor decided to be extra cautious and take his pulse ox which was 98 - good news. Also at this time his lungs sound good - however since he is more susceptible to respiratory distress, the doctor wants to keep an eye on his little cold. As if I'm not keeping a crazy eye on him all the time anyway.
When my parents were here they really helped me control the crazy. I think I did pretty well making it almost three days before caving in. And the doctor agreed it is important to be overly cautious considering Eli's roller coaster ride.
When I am by myself with the baby I get nervous. His tiny grunts, or short breaths, or little pauses in breathing are magnified when alone. My parents were such an amazing help these past few weeks. It nearly broke my heart when they left Sunday. My dad had been taking Jackson to and from school, bringing back breakfast, helping with projects around the house, picking up tiny sweets to celebrate Eli's birthday milestones, taking Jackson to see Santa, driving me around before I got cleared to drive again and even getting us some scales so we could see if Eli was gaining weight.
My mother managed the household while I recovered physically and mentally. She cooked for every meal, cleaned the house, unpacked boxes, kept the laundry under control, got the groceries, got Jackson dressed and fed for school, helped get the Christmas decorations up, basically ran the house. The lists are endless. We miss them so much. Jackson keeps asking me why Mam and Grandad don't live with us anymore.
Most importantly they really helped me feel safe. Safe about Eli. It's comforting to be able to say to someone who has been around Eli if they think that soft noise is grunting, if he looks blue, if he is breathing ok, etc.
I know I could easily make myself crazy with all this baby business and I am working on trying to relax. I just need a little more time. Mostly I need Eli to get a little bigger. A little stronger. I feel like once he gets a bit bigger and maybe less fragile I will feel more relaxed. That's my plan anyway.... again here is where I am always open for advice...
Hopefully I will last longer than three days this go round. I don't think I can convince the doctor to allow for a weekly Eli appointment for the next year or so.
In the meantime, Eric and I are trying to get back to a sense of normal even though we are still unclear on what Eli's normal is or will be.
With everything that has been happening to our extended family right now, we just don't ever seem to reach normal. We are living at a heavily-emotional state. Not a healthy place in the long run.
My parents helped maintain that sense of normal- especially for me.
I really miss my mom and dad.