Shots, Shots, Shots

Thanks to everyone for remembering Adam. I am sure that most people who lose babies always wonder what they would look like. In our case, we know what Adam would look like. He was the identical twin of Will. Adam would look like Will. I like knowing that. I can't imagine that we could have been blessed with two such handsome boys. If only he were still here.....

We have enjoyed the beautiful weather we have had this week. We took advantage of the mid-80's temperatures by playing outside every day. I think the fresh air helped with the colds and helped the babies get back to sleeping through the night. Something we ALL needed!!

Lindy had her usual appointments this week. Occupational therapy on Monday, Deaf and Hard of Hearing on Tuesday, Governor Morehead on Wednesday. Each visit went fine. All agree that she is doing well. We have a student teacher coming with our Deaf and Hard of Hearing teacher now. We have worked hard with Lindy and her vowel of the week and we think she might be trying to imitate us doing it. She is moving her mouth like she wants to say the sound. A couple of times sound has come out - but it sounds different than the 'ah' I make because of her vocal cord paralysis. But this is great progress! We're so proud of her!

Thursday turned out to be a bad day for Lindy and Will. The babies were still trying to get over their colds this week. Wednesday I noticed both seemed to be breathing harder and louder than normal. On Thursday I decided to call the nurse at the doctor's office. Of course anytime you mention 25 week old preemie with chronic lung disease they tell you to come on in for a checkup. So we load them up and get to the office and our doctor actually sees us at the desk. She comes to talk to us and says that the babies Synagis shot (their shot to help with RSV) is in and she was actually going to call us that day. Anyway she squeezes us into her schedule and checks the babies out. Both were fine! I figured they were but I just needed a doctor to tell me. The colds are still in their heads and have not moved down into their chests. Lindy's is apparently at the back of her nose. You can hear stuff in there but I still don't get anything when I suction her. Because they checked out okay they were able to go ahead get their Synagis shots. And because they are so big, they split the shot into two syringes which means they actually get two shots. The last time I talked to the nurse about their Synagis shots she told me they could get flu shots when they came in for their Synagis shots. So I asked about flu shots and they ended up getting those as well! Then, poor Will. He ended up having to get another shot because of some confusion about his Hib vaccinations. He ended up getting his third Hib vaccine yesterday. So one little visit to check on their colds turned into 4 shots for Will and 3 for Lindy! It turned out well for us though. We were able to get it all done and I don't have to make a trip back to the doctor's office to get the shots. It didn't turn out so well for the babies. They cried hard for about a minute and then they were fine. They took it like the little fighters they have proven to be.

We hope Nana had a wonderful birthday yesterday! We wish we could have been there to help you celebrate! Enjoy our pictures from the week.

Good thing they were both already sick. (Notice that the paci attached to Will is in Lindy's mouth!)

Waiting to get out of bed after a nap.

A new favorite chew toy from our OT.
Not sure how well you can see it - blow it up to see the snot running down from his nose and the drool running down from his mouth. He was a mess this week!
The babies were sporting their respective NICU graduation shirts. Lindy graduated from the Duke NICU and Will from the Baptist (Wake Forest) NICU.
Sporting the Halloween shirts I made them.
Will stands up all day long now (sometimes by himself but mostly leaning on toys and furniture). Until I want him to stand up so I can take a picture of his outfit. Then he won't do it. And Drew had to hold him in place to get a sitting picture. You can see pictures are getting more difficult! Lindy loves to stand and let me take pictures of her!

Remembering Adam

Today is Pregnancy and Infant Loss Awareness Day. I never thought in a million years that this day would mean anything to me. But it does. Please think of Adam, and all the babies that have gone too early, today.

"An Ugly Pair of Shoes"

I am wearing a pair of shoes.

They are ugly shoes.

Uncomfortable Shoes.

I hate my shoes.

Each day I wear them, and each day I wish I had another pair.

Some days my shoes hurt so bad that I do not think I can take another step.

Yet, I continue to wear them.

I get funny looks wearing these shoes.

They are looks of sympathy.

I can tell in others eyes that they are glad they are my shoes and not theirs.

They never talk about my shoes.

To learn how awful my shoes are might make them uncomfortable.

To truly understand these shoes you must walk in them.

But, once you put them on, you can never take them off.

I now realize that I am not the other one who wears these shoes.

There are many pairs in the world.

Some women are like me and ache daily as they try and walk in them.

Some have learned how to walk in them so they don't hurt quite as much.

Some have work the shoes so long that days will go by

before they think of how much they hurt.

No woman deserves to wear these shoes.

Yet, because of the shoes I am a stronger women.

These shoes have given me the strength to face anything.

They have made me who I am.

I will forever walk in the shoes of a woman who has lost a child.

Author Unknown

Crazy Week

What a crazy week this has been. Not so much for the babies but more for Drew and me. The babies getting colds didn't help anything either. Our church has a food booth at the Dixie Classic Fair. Six of the last ten nights, one of us has been working at it. That means the other person was left at home with the sick babies. It was better being at the fair booth than being at home! Drew also had a big business meeting to prepare for and of course we attended the Wake/Clemson game. An absolutely crazy week that didn't include that much sleep.

I went on Monday and picked up new lenses for Lindy's glasses. I'm sure she can see much better. Even though we have watched her like a hawk and have started taking them off of her if you walk out of the room, she has already managed to get a small scratch on them. uggggg.

Lindy had her Deaf and Hard of Hearing teacher here on Tuesday. We changed gears a bit with her. For months we have been showing her different toys and saying the sounds that go with them in hopes that she will start to say them. So far she hasn't said any. This week we are focusing on one sound in particular, trying to input it a lot and see if she'll say it. So far it's a no go but we've also been a bit slack about it because of the crazy week. She does think it's funny when I do the 'a' sound though.

It was Tuesday night that Will's nose started running and he started sneezing. He went to bed okay but was up soon after. He was having a hard time breathing through his nose and I don't think he knew what to do. I took him to the doctor Wednesday and they checked everything, including his blood for an infection, but all signs pointed to just a cold virus. He did weigh in at 20 pounds 1.5 ounces and was 28 inches long. Wednesday night was another night of sleeping on the couch with Will.

On Thursday you could tell Will felt a lot better and the snot production had really slowed down. It was Thursday afternoon I noticed Lindy was starting to sound a little bit stuffed up. Our friends who watched them while we were at the football game said her nose didn't run though. BUT she was up until 10:45pm. Every time she tried to lay her down she'd cry really hard.

Friday morning I could tell Lindy had gotten the cold. Despite my efforts to separate them she got it. Tuesday before Will's symptoms appeared they had shared spoons and straws. So I'm sure it was too late anyway. Her nose hasn't run like Will's and her temp hasn't gotten nearly as high. Friday night she was up until 11pm again. Drew ended up sleeping with her on the couch.

Saturday they both acted okay but it was another night of Lindy not going to bed very early. They've been okay today but I think she is still awake now.

I can suction Will's nose and get lots of snot out. When I suction Lindy's nose I hardly ever get anything. I can hear stuff up in there though. The last few nights she has thrown up on us though. Usually after she has fallen asleep she'll start a hacking cough and eventually she'll throw up. I don't know if it's because of phlegm in the back of her throat or what. It's not very fun. That wakes her up really well and then it's hard to get her back to sleep.

I hope this cold makes it way out of her early this week. The weather is supposed to be great so we need to be out enjoying it. We aren't enjoying our first foray into baby snot. I prefer when our children do not have snot running all over their faces!

Just a few pictures from the week. Once it got crazy I didn't even have time to take any.

Last weekend we went to a Hawaiian wedding reception where Lindy got a pretty lei.

I got out another new toy in hopes that Will will start walking behind it. So far he hasn't. He loves standing behind it but hasn't willingly taken any steps.

It can also be turned into a car you ride on. The babies will hate me one day for all the things I made them do so I could get a picture!!
A cute, clean boy.

Miss Thang in a cute little outfit. (Recognize these Erin?)
FINALLY! A picture of Will standing by himself! (Check out the wet drool mark on the front of the overalls. Nasty! It runs out of his mouth these days). Even a sick Will can get himself into trouble. He loves the bottom of the exersaucer. Most of his toys end up in there each day. He also likes to crawl through it.
Lindy was taking the car out for a spin.
This is my partition I had in the living room after Will got his cold. I was trying to protect Lindy from it. Lindy loved having her own toys that nobody took away and no one to steal her pacifier. Will stood at the partition most of the day trying to see what Lindy was playing with. He also kept throwing his contaminated toys onto her side!

It finally happened....

We got a cold. Will's nose started running yesterday (Tuesday) around 6pm. He sneezed all night and didn't sleep well at all. (Neither did we.) I took him to the doctor and everything checked out okay, just looks like a cold. He's been home 11 months and this is his first cold. I was beginning to think we were invincible!!

I'm doing everything in my power to keep Lindy away from him. I've created two separate play areas in the living room. We are washing hands and hand sanitizing like crazy. I hate Will got a cold but I really don't want Lindy getting it. I have nightmares of her going back on oxygen!

Keep your fingers crossed Lindy doesn't get it! I better get back to my snotty nose baby!

Busy Week Behind Us

If last week was a calm week, this week was about the opposite. We, well Lindy, had something every single day this week!

Monday she had occupational therapy. She watched her eat and overall she is doing well. She said the little thing under her tongue is a little tight. She gave me some new tool to get under her tongue and stretch it out. She also worked with her on the straw bottle. She said Lindy is pretty close. She assured me that they both would start sucking before too long. Well Will is finally getting the hang of it. He's finally started closing his lips around the straw and in the last day or two he looks like he is starting to suck! I'm just going to keep at it with Lindy and hopefully she'll have it in no time. Her problem is that she feels the need to bite the straw or put her fingers in her mouth with the straw. Makes sucking hard!

Tuesday we went to the eye doctor. The appointment was pretty easy, he didn't do much. We did order new frames for her this time. We made them much much stronger (-19.0 and -11.0). Those bad boys aren't cheap. We're going to have to watch her like a hawk to make sure she doesn't put little teeth scratches in this set!

Wednesday we had Governor Morehead and Thursday we had the Deaf and Hard of Hearing program. Both were good visits.

Friday was the big day (see post below for what and why Lindy had 3 appointments with nephrology). We had to leave the house at 7:45am to get to her first appointment. The first one was the VCUG. It was not fun. They strapped her to the 'baby board' with these big velcro straps. They had her arms up over her head, straped down as well. She was mad as fire! I got to be up by her head with her but she couldn't see or hear me. I just kept stroking her face and holding her hands. I was so worried she would throw up (which she often does when she gets really mad), but thankfully she didn't. When we went in we knew she had Grade 3 kidney reflux on the right. Yesterday they found Grade 2 on both sides. Good and bad I guess. The right side has gotten better but now they found it on the left. The doctor did say that it could have been there all along, that she might have been too small the first time they did the VCUG (back in Nov. 2007). They have to fill the bladder up very full and they might not have been able to do that back then. The good news is that most Grade 2 reflux issues will resolve themselves by the time kids are getting ready to go to school. Lindy has been on a prophylactic antibiotic since she got the first UTI and will continue to be on this antibiotic until the reflux is gone.

Next was the renal ultrasound which is an easy test. Just like pregnant ladies getting their ultrasounds. It's fast and easy. Unfortunately the results weren't exactly the best in the world. They have always told us that her right kidney is smaller then her left kidney. Unfortunately her right kidney has not grown in the last 6 months. Fortunately her left kidney has. So there are some questions as to how well her right kidney is working or if it is working at all. We have to go for another renal ultrasound in 4 months to look to see if they have grown. People can live with one kidney. People donate kidneys all the time, but obviously I'd prefer if both of her kidneys were working.

The next appointment was the appointment with the nephrologist to go over the test results. He explained everything to us and ordered blood work for her. They collected a urine sample and then Drew took her to get her blood drawn. He said the lady was really nice and Lindy did well. They did it very quickly. Unfortunately the doctor called later that afternoon and said her urine looked fine but that there was a labeling error and the lab wouldn't run the blood. She got this blood drawn for NOTHING! Kind of frustrating because I think at some point she'll have to have it drawn again. They did weigh her at this appointment. They said she was 17 pounds 3 ounces. They also said she was a little over 26 inches long. At their one year appointment she was only 24 1/2 inches long! I think she has hit a growth spurt. Which explain why some pants I thought would fit are a little short!

After we were done with her nephrology appointments we went by the hearing department and picked up new ear molds for her hearing aides. We finally got back home at 1pm. Lindy had a 15 minute cap nap and was doing fine. Drew and I were exhausted!

Glad it's all over with, that's for sure. Will has had a pretty quiet week. He is starting to stand a lot more by himself. I cannot get a picture of it though. His new standing habit has led to some recent falls. His face has taken a beating this week from the floor! He takes a licking and keeps on ticking though. One day he was crying pretty hard, until he saw the cords for the ceiling fan and then he completely forgot about crying. Too funny!

Here are pictures from this week.

How I found Lindy during a nap last week. She went to bed with the shirt on correctly!

Grandbob, Suzette, and Molly came up before the Wake Forest game last weekend. We ate and celebrated Grandbob's birthday. Will loves his Grandbob!
Grandbob and his little Deacon fans. We took the babies to the game, the ugly game that Wake lost :(
Enjoying the view from the front door.
Sporting some twin gear.

New cute pajamas.
For anyone going to the Dixie Classic Fair, don't forget to stop by Booth 10 for some good Palmyra UMC food! You may find me or Drew working this week!

Friday Morning

Think of Lindy tomorrow, Friday morning, as she has a morning full of appointments to check on her kidney reflux. They discovered in the NICU that she had Grade 3 kidney reflux. Urine normally flows in one direction—down from the kidneys, through tubes called ureters, to the bladder. Vesicoureteral reflux (VUR) is the abnormal flow of urine from the bladder back into the ureters. It was most likely caused from the urinary tract infection she had while in the NICU.

The great majority of children with reflux outgrow this over the course of several years. Reflux is divided into grades I, II, III, IV, and V. In children with grades I and II, 80% will resolve spontaneously by school age. Spontaneous resolution is progressively less common in grades III and IV (only about 10% of grade IV involving both sides), and rare in grade V.

Tomorrow Lindy will have the following done:
1.)Kidney and bladder ultrasound: This test shows shadows of the kidney and bladder that may point out certain abnormalities.
2.)Voiding cystourethrogram (VCUG): A test that examines the urethra and bladder while the bladder fills and empties. A liquid that can be seen on x rays is placed in the bladder through a catheter. Pictures are taken when the bladder is filled and when the child urinates. This test can reveal abnormalities of the inside of the urethra and bladder. The test can also determine whether the flow of urine is normal when the bladder empties.
3.) Blood drawn.

The ultrasounds are easy (she had that done about 6 months ago). Having blood drawn and getting her to lay still for the VCUG will not be so much fun.

Think of her tomorrow!!

Coats

Coats! Coats! Coats! We've now got coats!!! Mommy bought us lots of coats. Too many coats, she has to return a couple now!!



Thanks for the ideas. I never go to the mall so I hadn't even thought about it. Lindy and I had a successful shopping adventure yesterday!