Tuesday, November 6, 2012

The Wiggles Part 2

So sorry for the delay in telling you all about The Wiggles! So many of you have asked about the Concert, and this is seriously the first time I have been able to sit down and write about it. I thought things would get easier as time went on, but I'm finding the reverse is happening. The girls used to sleep "ALL THE TIME," but now they are normal babies that do nap, but not always that long and not always at the same time. Plus they are now mobile (which is another blog I will get to who knows when!). So back to the Wiggles. They were awesome – we sang, we danced and I cried. The tears started the minute they lead us back to the meet and greet. The crew member leading us back was named “Lachlan” and it dawned on me right as we entered the auditorium who he was. I said, “Lachlan…are you the new purple Wiggle?” He replied in a whisper “Yes” and winked at me. I now have a slight crush on him (clearly, I need to get out more).

The seats in the Ryman are church pews, and there was a group of about 30 families participating in the meet and greet.  We all took our seats and the Wiggles went from family to family to say a few words and take a picture. It was really strange to see them all in person after watching and hearing them every day for the past 5 years. I feel like they are part of our family, and when they walked up I just lost it. I was one face contortion short of the ugly cry, but I managed to tell them how special they were to us and to Jake. Not sure if Jake was processing it all, Greg (the yellow Wiggle) said, ”Let’s sing a song for Jake, so he’ll know who we are.” They broke out into an a cappella  version of Hot Potato. We got a picture (not the best of Jake, but Captain Feathersword was taking the picture, and you can’t always trust him) and they moved on, but it meant so much to us to tell them in person why we love them. The concert itself was also great. Jake really paid attention and seemed to love it. Emmett loved it as well, and he jumped up and down on my legs so much that my thighs were bruised the next day. During the concert, they introduced the new Yellow, Red and Purple Wiggles (Anthony the Blue Wiggle is staying on, but the others are retiring). Lachlan is ensuring that I will now introduce the girls to the Wiggles!

Meeting the Wiggles (good thing you can't see my ugly cry face!)
Love the Wiggly Hands!
Jake mesmerized during the concert.
Emmett was too!
Jake holding onto the new Wiggles DVD he got before the show started. 

Thank you Wiggles. I'll never forget that night or what you've done for us. 

Thursday, June 28, 2012

The Wiggles

Anyone who knows Jake or who has been following his story knows that he LOVES the Wiggles. His love began even before his accident. Around the time he turned 1, he was ready for something besides those Baby Einstein DVD's, and my sister in law had given me her old Wiggles VHS collection of tapes. Yes, that was back when we had both a VCR and a DVD player on top of the TV. I put in "Wiggle Time" one day when I needed to take a shower, and he was mesmerized.  I used to strap him into a booster seat on the floor, turn on the VCR and I had an instant 20 minutes. Our only issue was when they sang the song about the "5 little Ducks." When all the ducks were gone, and Mother Duck said "quack, quack, quack" but "no little ducks came back," Captain Feathersword would fake cry. His fake crying went on and on, and he would pretend to need a bucket to catch his tears. Captain Feathersword would even crack up during the song, but Jake took it very seriously. As soon as Captain Feathersword started crying, then he would lose it and cry too. He was only 12 months old, but the empathy that kid had. My sweet boy.

Jake was 15 months old and the Wiggles were definitely his favorite when he had his accident. We would play the Wiggles for him in the ICU. He was unconscious, but we hoped that the music would reach him. I don't know if it did, but we kept on playing them. Jake was sent from Vanderbilt to Children's Hospital of Atlanta Rehabilitation Hospital. Amazingly, one of the toys in their toy closet in the physical therapy room was a Wiggles guitar. This was the first toy post accident that Jake responded to and would reach for. I credit this guitar with helping him reach past midline and even turn his head and body from right to left toward the music. At the time, our Occupational Therapist told us that she thought Jake was blind. I remember vividly the day she took him into a dark room, and she shined a flashlight to see if he would follow the light. He didn't. We were still playing the Wiggles tapes, but from his hospital bed the TV seemed to far away. Our friend Shelley, whose own daughter had spent so much time in the hospital, sent us a portable DVD player. Suddenly, we could put a Wiggles DVD in and place it right next to him. Immediately, he started responding to it. He would calm down, relax and enjoy the music.

The Christmas after Jake's accident when we were home from Atlanta, Jake got the Wiggles Wiggly guitar and drum as presents. I had to order them from Australia, but I was getting that guitar. Four + years later it is still one of his favorite toys. Jake still watches the Wiggles almost daily, although he has some issues with Dorothy the dinosaur. We have almost every Wiggles DVD and Jake loves the old ones with the original yellow Wiggle Greg, and the newer ones with Sam as the yellow Wiggle.

I used to be on the Wiggles mailing list, and we took Jake to their concert back in 2008, but I changed my email last year, and I forgot to sign back up with the Wiggles. I was randomly checking their website recently (they now have an IPAD app that of course Jake LOVES), and discovered two things.  Greg is back, but only for this year as he, Murray (red Wiggle) and Jeff (purple Wiggle) are retiring. Anythony (blue Wiggle) is staying on, but they are doing one final celebration tour together, and they are coming to Nashville for one show on August 7th. OMG - we have to go. They are playing at the Ryman which is the coolest venue ever, and much better than when they were here in 2008 and played at the Municipal Auditorium (not cool). I went through ticket master, but the only 4 seats available were in the balcony. For those that don't know, there are really no bad seats at the Ryman, but with Jake's vision issues (he can see pretty well now, but doesn't attend well when things are far away) I didn't think this would work. I was so disappointed. I checked some of the ticket broker sites but floor seats were selling for $150 - $200 a piece. Really?

What's a Mom to do? Email the Wiggles of course. Here is what I wrote:

 Dear Wiggles, I am writing you to ask about your concert at the Ryman Auditorium in Nashville. I just recently learned that you are coming to Nashville. I have two boys that are HUGE Wiggles fans. Jake is 6 and has loved the Wiggles since he was 11 months old. He suffered a severe traumatic brain injury when he was 15 months old. He spent weeks in the hospital and has continued therapy to this day. He continues to make progress but still suffers many effects since he lost a lot of brain function. The Wiggles have gotten us through so many things and have probably been the one constant that Jake has loved both before and after his accident. Now his little brother (Emmett, age 2) loves the Wiggles since he is always watching them with his brother. All that to say, when I went to Ticketmaster to get tickets the only tickets available are in the balcony. Jake has cortical vision blindness due to his brain injury. He can see, but he has holes in his visual field, and he does not attend as well to things when they are far away. I wondered if you had access to any other tickets? Thank you so much for your time. We will forever be grateful to the Wiggles for how much they have meant to Jake. Elizabeth Doolittle

It has been a few weeks and I was starting to worry because I hadn't heard anything from them. Then, last night I got this email from the Wiggles Tour Manager:

Hi Elizabeth

Please find attached a voucher for 4 free tickets that include a meet and greet with the Wiggles in Nashville on 7th August. The meet and greet will happen prior to the 6.30pm show. You need to go to the box office 90 mins prior to register and find out more details on this fantastic opportunity.

We're counting down the days. Thank you Wiggles!
I haven't stopped smiling since I got this email. We're counting down the days. Thank you Wiggles!

Jake Christmas 2007

The Wiggles Concert 2008

Tuesday, June 26, 2012

6 Months and Counting.....

Has it really been over a month since I last wrote? Clearly we've been busy....growing! Last weight check was June 15th and Millie weighed 15 lbs and Ruby weighed 14 lbs 7 oz! We went to the NICU Neurodevelopmental Follow up Clinic for their 6 month check up. This is a screening clinic to make sure that the girls are developing the way that they should. We walked in the door and the Nurse Practitioner said, "well, someone's caught up!" While their growth has been amazing (Millie is in the 35th percentile as compared to typical 6 month olds and Ruby is in the 15th percentile), they still have some work to do with their development. Socially, they are right on track. Both girls are smiling, tracking well with their eyes, laughing etc. Physically they are a little behind (even compared to their adjusted age (3 1/2 months). They are holding their heads up pretty well, but their heads still lag some when you pull them up by their hands. They both will not put much weight on their legs at all. This is the biggest difference I see between the girls and how Jake and Emmett were as babies. At this point, I know both boys would bear weight on their legs and the girls will not. For this reason, the physical therapist that evaluated them put them at a two month old level of physical development. The physical therapist and the neurologist said that this was not a big deal, and that they should catch up with time. The neurologist said that she did not see any problems with tone which would indicate a neurological problem (like cerebral palsy). They gave me some exercises to do to encourage weight bearing. Part of me is not worried at all, but another part can't help but feel like here I am again doing physical therapy with my child. This is nothing compared to what we've been through with Jake, but just the fact that I am having to think about exercises everyday pulls at my heartstrings. Mostly though I am so thankful for their amazing development, and their smiles and giggles give me joy everyday. They also survived a recent bad cold with a lot of breathing treatments and nasal aspiration but NO HOSPITALIZATION!

The girls are on a great schedule now, and things have gotten a lot easier. The "breastaurant" is officially closed, which I have mixed feelings about. It was not a conscious decision so much as my body just quit producing much, and it was hard to pump as much as I needed to. I'm glad I made it 6 months, and it is a lot easier not to worry about pumping. I realized that with the exception of about two months between quitting breast feeding Emmett and getting pregnant with the twins, I have either been pregnant or breast feeding for the last three years. I think I deserve some new clothes (or at least some new bras!).

 Ruby and Millie try out the bumbo!

Jake did have a bad seizure three weeks ago. We had to call 911 again and go to Vandy. He was not totally out of it with this seizure, but his fingertips were turning blue and his breathing was shallow. We got the B team of paramedics unfortunately. They got to our house the fastest yet (17 minutes), but they were all on the older side, and when one of them tried to pick Jake up he started to drop him. I think he didn't realize how heavy he was, and Mamie (our nanny), La La and I all lunged for Jake, but he caught him at the last minute. I ran to get my stuff to go to the hospital, and as I was running out the door Mamie gave me Jake's diastat and said that she thought Jake was seizing again. We had given him one dose already. I got in the ambulance and told the paramedic that I thought he was seizing too, and he said, "yea, looks like it but there have been cut backs and we don't have Valium on the ambulance anymore." To give him credit he seemed frustrated by this and said this was one of the reasons he was going to retire soon. Thanks to Mamie's quick thinking (as usual), I was able to give Jake another dose of Diastat on route to the hospital. We ended up having to spend the night at Vandy because Jake had some weird apnea spells post seizure. He has never done this before, but he was very nauseated and I think he was holding his breath when he would get very nauseated and gag. He finally vomited and didn't have anymore spells. We have increased his Depakote, so he is now on the max dose. The main side effect I see is sleepiness. He seems a little slowed and out of it more than usual, and we have stopped giving him his middle of the night muscle relaxers, and he is sleeping to 6 am.

Lastly....who needs a swimming pool when you have a bucket! Emmett cools off in the oppressive summer heat we're having.

Wednesday, May 23, 2012

No news is good news!

You haven't heard from me in awhile, but that's a good thing. Everyone is healthy and sleeping pretty well. The girls are sleeping through the night for the most part. They wake up and squeak a little, but will put themselves back to sleep. Millie wants to get up at 5, but I usually push her to wait until closer to 6 to eat. The last few days I've had to wake Ruby up to eat with her sister. Terrible, but that's what you have to do with twins. They do not seem to wake each other up when they cry. They have learned to tune each other out I guess. Wish that worked for me when Scott snores. Of course now that the girls are sleeping well Emmett is waking up super early. The girls might be waking him up, but regardless he is up at 5 screaming at us from his bed. He has been very irritable as a consequence.

I'm not sure what to do with Emmett. He is the most entertaining lovable child, but he is so strong willed. He has learned how to scream and does so at every opportunity. He has also learned to say "Screaming, time out," but that doesn't stop him from continuing. "OK" is his favorite catch phrase and he sounds like a petulant teenager. I asked him this morning if he wanted to watch Barney and he replied, "OOOKAY" like I was putting him out. He is waking up from his nap right now, and I hear him over the monitor going "OK, OK, please, OK." He is also not too thrilled about Millie and Ruby being around. He has started to hit them on occasion when I am holding them. All normal jealousy stuff, but these girls are learning to be tough. Jake bit Millie's foot the other night. We were all in the playroom, and normally I don't even put the girls on the floor when Jake and Emmett are around, but Mamie and I were both there. Emmett had a dirty diaper, and we turned our heads for 1 minute to wrestle him to the ground when we heard Millie crying. We didn't know what happen until Mamie took Millie's sock off and we saw two little bite marks. I felt terrible. I worry so much about how to keep the girls safe.

I have an awesome video of Jake to share. He has been taking swim lessons with Beth Scruggs since he was 2. She has worked so hard with him and it has taken a long time, but he is doing great and he loves it.  I think I told you in the last post that he swam 25 yards on his own. He wears flippers which helps, but he is not wearing any life jacket or other support. He swims a little, then stops to pick his head up and breathe and then continues. Truly amazing. I have tried to post the video here, but I can't get it to work, and I don't have time to figure it out so here is a link to it on you tube: http://youtube/W8Xil61t7BQ

The first picture I have gotten of Emmett with the girls. I trusted him to sit there next to the girls for the 1 second I took to take the picture. Fortunately he kept his hands to himself.

Millie looks like she is leaning in for the party pic with Ruby. 

Monday, May 7, 2012

Cracking the Baby Code

It's 8 pm and where are the children?? Asleep she shouts as she giggles and downs her second glass of wine. Ahhhh, I think we've finally cracked the Millie and Ruby code. The hours between 7 and 10 have been exceptionally rough the last two months. We put Emmett to bed at 7, and he's been fighting that a lot lately. Lots of tears and throwing lovies and stuffed animals out of the crib, but we long ago learned to ignore him until he falls asleep (except when necessary to go throw said loveys back into the crib and maybe get roped back into one more round of Amazing Grace (Gace Gace Sit demands Emmett which translated means sit down and sing me Amazing Grace woman, you are my bedtime slave). The girls eat at 7 pm and are usually very sleepy, but as soon as we lie them in their cribs they start crying. Thus ensues 2 or 3 more hours of carrying them around, putting them in the swing, getting them to sleep, only to have them wake up as soon as we try and lie them down again. Often we would get them good and asleep only for it to be time for them to eat again. I haven't been able to bear letting my "preshush little babies cry." I would wake them up at 10 because I wanted to go to bed! Why is it that it takes someone else to point out or try out the obvious????? Enter Pam from stage left.....

Pam has been coming to help with the girls three nights/week since the girls were born. I love love love the days when I know that Pam is coming that night. It makes me giddily happy and as my friend Jenny's husband says, "People who think money doesn't buy happiness have never had a baby nurse." It's expensive, but worth every penny. Scott is out of town right now, so Pam came early this past Friday night. Normally Pam doesn't come until 10 pm, but since Scott was gone she came at 6. I used the opportunity for a girl's night out with my friend Beth. When Beth and I got home, Pam said she had fed the girls and put them down in their cribs. What??????? She said they had fussed some, but she would go in and check on them, and they would stop crying. The on again off again crying ensued for a little while then they fell asleep. She also said that she was going to let them sleep through the 10 pm feeding and see how long she could get them to go. That was fine with me, since I wasn't the one doing it. Knowing they are 12 lbs now I knew it was time (but mostly because I wasn't the one doing it). Scott and I had actually tried to let them sleep through the 10 pm feeding the night before, but they only made it to 11. OK Pam, I thought...good luck, see you on the flip side. Well, she showed me and she got the girls to go until 2 am!

Encouraged by Pam's success, I decided that I could also put the girls to bed after their 7 pm bottle. Here I am, 3 days after Pam's initial night and they are asleep in their beds. Some nights have gone better than others, and last night I caved and put Ruby in the swing for awhile, but I was back on it tonight. I turned off the baby monitor, and although I could hear them crying I could also ignore (My Mom is in town and she had Dancing with the Stars on so loud that it helped drown out the crying). I just took Jake to bed at 8 and all seemed quiet upstairs. I had a big grin on my face as I crept into Jake and Emmett's bathroom to get Jake's toothbrush when I heard, "Mamma, Mamma, MAAAAMMMMAAAA!" from Emmett's room.  Argh.....another round of Amazing Grace but back into the crib he went and I think he's asleep now. Jake still has some weird sleep issues and it was 11 pm before he went to sleep last night. We still have to give him muscle relaxers in the middle of the night in order to stay asleep, but it's so much better than it used to be that I really have no complaints. The girls are still sleeping through the 10 pm feeding and going until 1 or 2, so I guess we have officially dropped one feeding. I wish we had dropped the 2 am instead of the 10 pm, but beggars can't be choosers. I am starting to see the light! Mostly time is going by so fast, and as much as I want things to be easier, I am so afraid that it is moving too fast and I am not appreciating the small things.

Ruby and Millie 

Thursday, May 3, 2012


We're home from the hospital (spent 14 days there total) and the girls are doing well. The boys have had another cold, but so far the girls have not caught it (fingers crossed). We went to the MD today for a follow up and Millie has an ear infection. She has not seemed uncomfortable, but I guess it's a left over from all the congestion. Both girls are still a little congested but not coughing and breathing well. Millie weighed 12 lbs today and Ruby weighed 11 lbs 9 oz. WOW. The girls have changed so much in the past two weeks. They are smiling a lot, batting at toys and so alert during the day.

Now that they are home from the hospital, no more slacking off. Morning exercise
Telling secrets at the MD office today.

Jake turned 6 on April 19th. We didn't have a big celebration since the girls were in the hospital, but I took cookies to his class at school. He has not had any more seizures. We've been told that there is a bit of a honeymoon period on Depakote, and that it may stop working for him at some point, but right now he is tolerating it pretty well. We've seen the neurosurgeon and two neurologists recently. I'll update you later but we're basically just doing a more in depth work up which will include an MRI and a PET scan. It will take awhile to get all the tests etc done so no other news right now. 

Emmett had his first Sweet Cici's (frozen yogurt) this week. He wanted strawberries and grapes (? they don't have grapes) as toppings. I added gummy bears which were a real hit. Nummies! As you can see from the picture, Emmett also got his haircut again. Ugh....it was worse this time than the first time. I tried to start with giving him a lollipop, but there were still tears and thrashing, and we ended up with a hairy lollipop and a very uneven cut. 

Friday, April 20, 2012

Double Trouble

We are still at the Monroe Carell Jr Children's Hospital at Vanderbilt. I honestly thought we would only be here a few days when Ruby was admitted last week, but 8 days later we are still here. Ruby was admitted last Thursday then Saturday she developed a fever and a chest X-ray showed pneumonia. She was very congested and uncomfortable the first few days and required pretty frequent suctioning. Millie was great all last weekend then Monday night she developed a slight cough and Tuesday morning she woke up with a fever. I took her straight to the MD, but her lungs were clear so we came home with instructions to monitor her closely. She went downhill pretty fast all day. She vomited several times and did not want to eat. She was listless and not herself at all. When I checked her oxygen level it was dropping and bouncing up and down so I took her back to the MD. Our MD was off that day but two of the other MD's agreed that she did not look well and sent us to the ER. So while Scott was up on the 8th floor with Ruby, I was down in the ER with Millie. Millie's chest x-ray also showed pneumonia and she was admitted and started on antibiotics. Ruby started getting progressively better and needing less and less suction and then yesterday they took her off oxygen and she was able to maintain her sats. After 24 hours off oxygen she was discharged. Millie is doing better too but she is a few days behind Ruby on this illness and she is still on a little oxygen. We hope to have her home in a few days. The girls were put in separate rooms but across the hall from each other. When I was there by myself I was running from room to room but they finally worked it out so that Ruby could "visit" Millie during the day. She had a portable monitor and a bassinet to use. We tried to wheel her whole bed in the room and although it fit, it was a liability for the hospital and they made us move it back. At night they went back to their separate rooms which meant that we had to have two people spend the night. Thanks to babysitters and family we have made it work. Thanks to Pam, Margaret, Lauren, Laura and Mildred for taking the night shift some. We couldn't have done it without you. At times like this I realize how blessed I am with amazing family and friends. I can't even list all the names of people that have brought us dinner, taken Emmett to school and for play dates, neighbors that have come over to sit with my kids and help out or run over when they saw an ambulance. It gives me so much comfort to know that I can call on people to help when I am in crisis mode.

I have just gotten home from the hospital with Ruby and Scott is staying with Millie. It's late but I have been trying to write this entry for days. The girls have become quite colicky lately. I think this is all I can do because I keep shutting my eyes. More later and pictures. Elizabeth