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

Home

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

Friday, April 13, 2012

Guess where we are?

One guess as to where Ruby and I are? Yes, that's right - the Monroe Carell Jr Children's Hospital at Vanderbilt. Ruby and Millie have been congested since Millie was here last week and diagnosed with a virus. It has not affected them too much but Ruby's congestion started getting worse this week. She had an episode Wednesday where she looked like she was turning blue. I took her to the MD, but once we were there she looked nice and pink and her lungs were clear. Later on Wednesday she started coughing. The coughing got worse over night, and she would not eat much and seemed really uncomfortable. I tried hooking her up to the pulse oximeter, but I really don't think it is accurate. I am trying to go more on how the girls look and are acting. She looked pink, but her cough sounded bad, so I took her back to the pediatrician yesterday. He agreed she did not sound good, so he sent us to the ER. We were hoping that a breathing treatment and more accurate pulse ox monitoring would do the trick, and we would be able to come home. She had a breathing treatment with hypertonic saline. This is basically saline with a higher salt component which irritants the lungs and thins out the mucus to help get it out of Ruby's lungs. They followed this with deep suction which involved sticking a tube down her nose and into her lungs to suction her out. This seemed to really help her, but her sats continued to drop into the upper 80's, so the MD admitted her so she could get some extra oxygen and more breathing treatments if needed.

I think Ruby got over stimulated and also didn't feel well, because she cried for 3 straight hours last night from 8 to 11. It's hard to walk a baby around when they are attached to the oxygen on the wall. I had about 3 feet that I could pivot in and nothing was making her happy. The respiratory therapist finally came in and gave her a racemic epinephrine breathing treatment. She had developed a stridor (high pitched breathing sound which indicates swelling in the back of the throat) and wanted to use the epinephrine to decrease the swelling. This seemed to help and she finally calmed down. She has done well the rest of the night and this morning. She is coughing, but she has fed and rested well, and they have lowered the amount of oxygen that she is on. The plan is to keep her here tonight and hopefully she will do well and get to come home tomorrow, but we will see. We are currently still in an ER room. The hospital is over crowded, but we hope to get a regular room later this day. It's not too bad, but sharing a bathroom with the neighboring room is a little weird. It seems like there are 20 people in there with how often I hear them in the bathroom, but they probably didn't appreciate my middle of the night bathroom usage either!

We have no idea if this is the same virus from last week or something new. This is a prime example of how prematurity continues to affect us. Premature babies are not just small newborns. They have so many risks to their health and development that we can't always predict. My hope and prayer is that one day they will not be affected by their prematurity, but there are still a lot of unknowns at this point. They have certainly done well so far even despite our frequent hospitalizations, but just because they start to gain weight and look like "normal babies" we can not let our guard down. I think the general public thinks that once you get out of the NICU and gain weight that you are just like any other baby, but that is not the case. Speaking of weight gain....at the pediatrician this week Millie weighed 9 lbs 12 oz and Ruby weighed 9 lbs 10 oz!


Ruby resting!

Monday, April 9, 2012

Happy 4 Month Birthday


Happy 4 month Birthday Millie and Ruby!!!

I can't believe the girls are 4 months old today! I have about 10 minutes to write this update because everyone is relatively quiet in our house right now. The girls have really woken up lately, but unfortunately that means they are often crying. I think they get over stimulated and have trouble falling back asleep when they have been awake too long. I need to learn to read their cues better, and I suspect that it will get better with age, but there is still no real schedule to their awake/sleep cycles. I feel guilty that we don't have more quality awake time, but it truly seems like they are fussing a lot of the awake time, so we can't do tummy time or whatever it is that I feel like they/I should be doing. I am trying to stay cognizant of the fact that they are really only 1 month old in adjusted time, and things have a way of working out. I mean...they won't still be getting up at night forever, right? The sleep deprivation is starting to get to me. I have a laundry list of things that I have done/forgotten lately that I could tell you about, but I'll choose just one. I dropped off some trash at the dump near our house (sounds trashy but it's an upscale dump if you could qualify dumps as such). Anyway, I went from the dump to Publix which is maybe a mile away. About 3/4 of a mile I started to think it felt really airy in my mini van. I kept thinking how fresh it seemed, but I checked my windows and the sunroof and nothing was open. It wasn't until I was turning into the Publix parking lot that I noticed that I left the rear door completely open and up in the air. 


Someone is constantly crying in our house lately, and that doesn't include the children. 

I was hoping to give you a good report this week, but we had to take Millie to the hospital last week. Long story short she didn't look good last Monday. She slept most of the day and looked really pale. I hooked her up to Ruby's pulse ox monitor and she was satting in the 70's. I wasn't sure if it was real or not because once again the probes were not working that well. I called the oxygen company and had them bring out new probes at 9 pm. She continued to bounce up and down and finally at 2 am I felt like her sats were staying down more than up. My Mom was in town, so I had Scott drop Millie and I off at the ER. They really should give out frequent flier cards - we should have Platinum status by now. I am starting to worry that they have Munchausen by Proxy written by my name. People are starting to recognize us in the ER and I find myself giving directions to other parents ("Oh the bathroom - around the corner on your left."). Agh......They put Millie on some oxygen and did some tests. She tested positive for Rhinovirus and Enterovirus - both cold type viruses. Emmett has had a runny nose and congestion which I thought was allergies, but I guess it was a cold because he woke up with a double ear infection two days later. I took Ruby to the hospital to visit Millie (before I knew she tested positive for viruses but frankly they were both congested, so I know Ruby had it too). I was actually worried about Ruby, so I thought we would hang out at the hospital and if Ruby started desatting then we would already be there). 


Ruby  visits Millie in the hospital.

I have taken Jake to the neurologist and the neurosurgeon lately. I'll have to write another update about that, but he is doing well on Depakote and we're going to do some more tests to see if there is a surgical option for him. He is tolerating the Depakote and not having seizures, but I have noticed that his impulsivity/aggression is a little worse. He has been all over Emmett the past few days. He grabs him by the hair and tries to pull him to the ground. I make a big show of putting Jake in "time out" when this happens for Emmett's sake, but Jake continues to do it. He has been trying to bite me, pinch me, hit me in the face a lot as well. Not new behavior but maybe increased. I am really worried about protecting the girls from him. I had the same worries with Emmett when he was a baby, but Jake was not as mobile then as he is now. There is really no safe place (another reason the girls can't be on the floor for tummy time more often). I never leave Jake and the girls in the room together. On a positive note, Jake is doing amazing with his swimming. I need to figure out how to upload a video to blogspot, because you need to see this. Last Saturday he swam 25 yards BY HIMSELF using flippers to help. He has come such a long way, and it is all thanks to his amazing swim teacher Beth Scruggs. I could write another entry just about her, but I have tears in my eyes just thinking about all she has done for Jake and the Nashville community. She coaches the Special Olympics swim team, and she has such a gift that she is sharing with us. 

No more time to write tonight. I still have to tell you about what miracles my girls are and all they have survived. To think that when I was 16 pregnant and diagnosed with Twin to Twin Transfusion Syndrome that both girls were just weeks away from death. Millie was almost in heart failure and Ruby was shrink wrapped in her amniotic sac. Ruby was donating all her nutrients to Millie, but it was too much for Millie and overloading her heart. A fatal situation for both of them which is why I was sent to Cincinnati for fetal laser surgery. Another entry but I feel so blessed to have these girls here (even when they keep me up all night!).


Happy Easter from Millie!

Wednesday, March 21, 2012

The Doolots and the Terrible, Horrible, No Good, Very Bad Week!

One of my husband's favorite books growing up was "Alexander and the Terrible, Horrible, No Good, Very Bad Day" by Judith Viorst. I keep seeing the title in my head and I think it describes last week pretty well - it was terrible, horrible, no good and very bad.

It started Tuesday afternoon. Jake came home from school and seemed like he was in a good mood. He went into the playroom and was content watching a Wiggles Video. Emmett was actually happily playing as well and Mamie and I were feeding Millie and Ruby. At one point it seemed a little quiet to me, but Mamie said she had peeked in the playroom at Jake and he was watching the video. About 15 minutes after that I had to go into the playroom to change Ruby's diaper. I looked at Jake and he was lying on the floor with his face close to the DVD player. He does that a lot - sticks his face up close but on second glance I noticed that his head was deviated, his right arm, hand, and mouth were twitching. I flipped him over and he looked very pale and his lips were blue. He was breathing in gaspy breaths. Not knowing how long he had been having a seizure, I waited a few minutes to observe then gave him diastat (rectal valium). I have only ever had to give Jake one injection, but after 6 minutes things had not improved. Mamie (thinking more clearly than I was) thought to hook Jake up to the pulse ox machine that we have for Ruby. I took it off Ruby's foot and put it on Jake's thumb. He was satting in the 50's and 60's (90 to 100 is normal). I called 911. It was a harrowing 10 minutes waiting for the ambulance. I debated giving Jake some rescue breaths but the 911 operator said not to if he was breathing (in retrospect I should have given him rescue breaths). The paramedics had to help Jake breathe the entire way to the Children's Hospital, but right about the time we got there he started breathing normally on his own again. He was pretty out of it since I had given him 2 doses of Valium, but he did react to pain and tried to push them away when they were trying to get an IV in. At that point we had to wait for Jake to wake up before we could go home which took another 8 hours or so. We got discharged at midnight. They did start Jake on Depakote. It's an old seizure medicine and not used as much now because liver function has to be monitored, but a good short term med until we can see the neurosurgeon. Jake has done well over the past week since his seizure. He seems to be tolerating the Depakote pretty well, so I'm praying we will not have another episode like last week and that we can discuss more options when we see the surgeon in April.

When we were sent home from the hospital with Ruby's pulse ox, the Oxygen company gave us two probes to attach to the monitor to use for the month. The first probe didn't seem to work well after a few days, so we had already moved onto the second probe. That is the probe that went to the hospital with Jake, and I guess they took it off because we didn't come home with it. We had someone staying with us to help with the girls that night and she told me the next morning that the old probe had stopped working during the night. I didn't think too much of it, because Ruby has been doing so well. I did call the Oxygen company but they said that insurance only pays for 2 probes/month. I said I would try the old probe again, but I couldn't find where our sitter had put it. That night Ruby was very fussy and did not eat well all night. Thursday morning she did take most of her bottle, then at 10 she vomited after only taking an ounce of formula. We stopped feeding her and she didn't look good to me. She looked pale and just "not right." I called the MD and they said to come on in. I started thinking that she really didn't look good and that I should check her sats. Mamie found the old probe and we hooked her up. It said she was satting in the 60 and 70's. It seemed accurate to me based on how she looked, so I called 911. I couldn't risk putting her in the car and I knew she needed oxygen right away. There was a disaster with the fire truck and ambulance getting to our house. Apparently there was a tree trimming truck taking up over half the street. The fire truck had to run over the truck's cones to get by and when the ambulance tried to do the same it got stuck half off the street. They had to get out and walk down the street to our house. The firemen were able to start giving Ruby oxygen until the paramedics could get there. They called a second ambulance to take us in and the first one had to be towed. Ruby seemed fine in the ambulance on just a little oxygen, but when we got to Vandy and they tried taking her off the O2, then she started dropping her sats again. We were admitted and had some tests run, but the only thing they could find was reflux on her swallow study and some abnormal labs indicating a viral infection. She was discharged Friday night and seems to be doing well at home. We are monitoring her all the time for now. The O2 company brought us two new probes at 10:00 Friday night.

I have so many thoughts about this past week, but I am not sure I can even talk about my feelings around it yet. It was enough to get the details out. Maybe I can write about it later. Thanks to all my neighbors that reported the tree company to the police. Not sure they really listened because they were back blocking the street again today, but after several of us called the police they moved.

On a happier note.....Pictures!

 Ruby in the hospital.

 Back home with O2 sats at 100%!

First time outside with Jake!

Wednesday, March 7, 2012

Welcome Home Ruby!

Ruby came home yesterday! She was discharged with a pulse oximeter to wear while she was eating. They first tried to send her home on an apnea monitor which was terrible. She doesn't have apnea, so it didn't make any sense, and she had to wear these electrodes on a belt around her waist. The false alarm kept going off when the electrodes would slip, and it was so loud and obnoxious that I felt like we were causing hearing damage. I had to spend the night with her in the hospital to show that I knew how to use the monitor. I won't go into how ridiculous this was, but it's the rule and I did it. In a way it was good because I was able to tell them we didn't need the apnea monitor and the MD agreed, and we just came home with the pulse ox. She is still desatting some, but it is not bad and she doesn't do it every feed.

One day in and so far so good. I'm trying to get the girls on the same schedule which is working, although when by myself I feed one first then the next. It is still taking them 30 to 40 minutes each to eat, so I feel like my day is feed, burp, change repeat. Emmett hasn't paid them much attention but he is acting out so I know it is affecting him. One day he will thank me for giving him sisters, right?

Jake is off his seizure medicine. Small episode/seizure at school Monday morning but otherwise ok. We have an appointment with the neurosurgeon in April to explore surgical options to treat seizures. He just doesn't do well on medication. Hoping and praying for the best until then.


Together after 89 days in the hospital. 

They look so much alike now that we can really put them side to side. 

I love this one because Millie (on left) seems to be saying "what, I thought I was the only one and now I have to share?" and Ruby (on right) is happy to be home.





Saturday, March 3, 2012

One week home and where is Ruby?

We've had a great first week home with Millie. She is so precious and seems to wake up a little more each day. She is not always making it 4 hours to eat anymore, but that's ok. Ruby is still on a 4 hour schedule in the NICU, so we'll have to work on getting them on the same schedule when Ruby gets home. Speaking of Ruby.......we thought we would get to bring her home yesterday, but she has continued to desat (drop her oxygen) off/on throughout the week when eating. It's not really when eating, but when we are burping her or after eating. She always brings herself back up without intervention, but we'd like her to not do that at all. It seems to be getting better. Two weeks ago she was dropping into the 40's and 50's, and this week she has just been dropping to the 70's and 80's. The MD said yesterday that we should be able to bring her home this coming week, and if they have to then they will send her home on a monitor. I can't wait to see the girls together. Millie was 6 lbs 4 oz at the pediatrician last Wednesday and Ruby was 6 lbs yesterday! I love seeing their fat cheeks.

Emmett is starting to figure out that "the baby" is staying. She is out of sight out of mind most of the time, exact when I'm feeding her or holding her and Emmett wants "UP!" He has also been taking her bottles and pacifiers and running away with them. Having two home is really going to rock his world.

Jake has been on the new seizure medicine two weeks now. He seems more irritable - not quite as bad as when he was on Vimpat, but he's on such a low dose that I worry about increasing. He has also had three weird events (maybe I already mentioned this) where he wants to fall asleep suddenly, and he gets very fussy. He can't keep his eyes open, and this has happened at random times in the middle of the day. Twice he went on to sleep for several hours, and then vomited later which makes me think it was some type of seizure. Very odd to me that in the three weeks that Jake was off medication he was happier and had no seizures. Now that he is back on medication he is having problems again. Seems like an easy answer - just take him off medication, but the neurologists are telling us that this will lead to worse and worse uncontrollable seizures. I think it may be worth the risk though, because it is heartbreaking when he is crying and crying and can't tell you what it is that is bothering him. Yesterday morning I was lying in bed with him at 5:45 am trying to buy us a few more minutes before actually getting up. He was so aggravated and kept reaching back to pinch me. I find myself getting angry because it hurts and when he screams it wakes up Emmett, but Jake has no other way to communicate what he is feeling at those times.

To leave you on a happy note.....here is Millie happy to be home.

Friday, February 24, 2012

Welcome Home Millie


Sorry for the delay in posting this week. You'd think I had four kids or something. Millie is home! We thought we were bringing both girls home, but I have been a nervous wreck about Ruby. She has been dropping her sats after eating all week. She comes up eventually, but to watch her dip down in the 50's and bounce between 50 and 70 % for several minutes is pretty scary. It's odd because she has no trouble when she is actually eating, but afterwards when she needs to burp she tends to hold her breath. Our primary nurse has been out for 8 days and she was back today. She expressed concerns about it, because Ruby was still on oxygen with feeds the last time she worked. We both talked to the neonatologist about it today, and he suggested they keep Ruby for several days to watch it. The MD was actually there when I was feeding her and it happened today, so it was good for him to see it first hand. After looking at her chart he thinks she might just be over feeding. Apparently she is taking in about 30% more than they expect. She is "ad lib" feeding, so she can eat as much as she wants. She comes by that honestly! I was sad to leave her in the NICU but honestly pretty relieved. I am hoping that this will improve and she will be home in a few days. 

We're so excited to have Millie home. She's only been home 6 hours, and we've already had to change her clothes 3 times due to blow outs. The girls are on a 4 hour schedule right now which is pretty dreamy. I'm not sure that it will last when they "wake up" more, but it does make things easier. My boys always ate every 3 hours, so we'll see. We were worried about Emmett's reaction, but when he got up from his nap his Mimi (my Mom) and his Daddy were home in addition to me and Mamie (our nanny - not her real name but what Emmett calls her), so he was pretty excited. He looked at Millie and said "baby" but that was about it. Jake came home from school and went immediately to a swim lesson, so he didn't even really see her. By the time he got home she was asleep in her bassinet. Speaking of Jake, he has had 2 probable seizures this week, so please continue to pray for him. More on that later.

The hospital photographer took some pictures of the girls this morning. Wow - those have come a long way. I didn't even order any with Jake because they were so horrible and no one offered to take Emmett's pictures. These were pretty professional and they took multiple pictures. I snapped a few with my I-Phone during the session. 


Welcome Home Millie. We miss you Ruby.

Sunday, February 19, 2012

Growing Girls

The girls are packing it away lately. Millie is 5 lbs 6 oz and Ruby is 4 lbs 14 oz! They are really filling out, and the preemie clothes actually fit now. They have been doing better since their setback, although just when I start to think things are really better they have a bad day. Millie is being weaned off the oxygen, but she still has the nasal cannula at a low flow and mostly room air O2. She needs more during and after feeds. Her nurse yesterday thought she was having some reflux, because after eating it seemed like she was swallowing a lot. Ruby has just been needing O2 when eating, but yesterday the nurse was able to feed her without O2 until the feeding I tried to do. She actually seems fine when eating, but she holds her breath when she needs to burp, and she kept dropping her sats after eating too. I'm wondering if both girls have reflux, but that's not a term they throw around lightly in the NICU, so we'll see. It does seem like they have both had more trouble since going to the open crib. In the isolate their beds were at a 30 degree angle and now they are flat. They will not elevate the open cribs, because they don't want you doing that when you go home (SIDS risk).



(Thanks to Liz H for these adorable onesies!)

Jake ended up staying two nights at Vandy. I was not planning on that. I had packed us up and had one foot out the door when the MD came in and recommended another night. They just wanted to make sure they captured everything they could. Jake did not have an actual seizure while we were there, but the EEG showed increased electrical activity/sparking in the right posterior brain. The MD recommended starting another medication. He said that leaving Jake off medication is not an option because most likely the seizures will increase and spread to deeper areas of the brain and be even harder to control. Jake was actually really good while we were at the hospital. By day 2 he was definitely ready to leave, but overall he was pretty content. Getting all the glue out of his hair is another story. Jake is also still limping. I took him to the orthopedic on Friday and they x-rayed his hip, knee and foot but nothing showed up. I think the limp is worse and it is really worrying me. He does not seem to be in pain, but he is not walking well. If it does not improve then we'll have to go back to the MD. Jake can't seem to catch a break lately.

We would appreciate prayers for Jake and the girls as well as their caregivers. We have been blessed with amazing nurses and doctors, but pray for them as they make decisions for all the kiddos.

Last but not least Emmett continues to get into trouble on a daily basis. I really find him hilarious, and it's so fun to see him develop. Everything is so hard for Jake that we marvel at Emmett when things come so easily for him.


"Who me? I have no idea how these spaghetti noodles got all over the floor."

Tuesday, February 14, 2012

Jake's EEG

One hour in it was looking like this:

Jake actually looks ok in this picture but it was mostly crying and kicking and trying to get those electrodes off or to get the techs to stop messing with his head. I just had to hold him tight. Afterwards he was very still and quiet for about 20 minutes just watching the Vecta machine (bubbles and lights) they brought in to distract him. I think he was so worn out from all the crying. Eventually he started playing and moved from the bed to the floor and back. The electrodes are attached to a long cord that allows him to move around pretty easily.


Jake ate a good dinner and Scott came to visit. He got several visits from Child Life (our nanny used to work for Child Life so we got primo star status!) and even got a pillow pet as a Valentine's Day present. He does not seem to be very bothered by the electrodes now.

As I write, Jake is supposed to be going to sleep. He is quiet but still rolling around. I am praying for a restful night for him. We should know the results of the EEG in the morning. I want to sincerely thank all of you for your prayers, notes, messages etc. It really gave me strength today as I got closer and closer to our 2 pm start time, and I felt empowered by all the good thoughts circling around me. It really does make a difference.

Millie and Ruby are doing better. Millie is on continuous oxygen although at a low flow and Ruby gets oxygen when she eats. Millie is getting a bottle every other feeding and Ruby is getting a bottle every feeding. The MD assures us that they will get back to where they where before the setback, but they need a little more time. Millie weighs 5 lbs and Ruby weighs 4 lbs 9 oz!

Ruby sucking her thumb today!


Millie

Emmett in motion about to pounce on Avery!


Happy Valentine's Day! Love, The Doolots

Monday, February 13, 2012

It's a Marathon, Not a Sprint!

Anyone who has had a significant NICU experience will tell you it's a marathon and not a sprint. Setbacks are expected, there will be ups and downs etc etc. I have been feeling pretty blessed that our journey has seemed so straight forward -  with each obstacle expected and then goal met and we moved on. My girls are clearly sprinters I thought. I tend to be slightly on the competitive side (ok a lot), and I have found myself wondering things like, "What's the fastest a 27 weeker has ever made it out of the hospital? Maybe my girls will be the record for the fastest NICU stay." The past 5 days have been a big reality check and reminder that it just doesn't go like that with preemies.

Last Thursday Millie started having some episodes of bradycardia (low heart rate) and apnea (low oxygen) spells. She seemed lethargic and was not feeding well. The MD ordered labs and it showed inflammation and possible infection. She said it might just be from the vaccinations that she got, but they needed to do a septic work up just in case. This meant that Millie got a lumbar puncture and urine culture, and they started antibiotics until those labs came back (which take 48 hours). This sounds over the top, but you have to take infection pretty seriously in the NICU. Babies can get infections which can lead to significant illness, disability and mortality. Her labs did not end up showing any infection, so after 48 hours her antibiotics were stopped. Unfortunately she has continued to be puny and need some help breathing, and she is back to getting a bottle every other feeding (they had increased her to bottles at every feed). We don't really know the cause - whether it was the vaccinations or her just getting worn out or reflux when eating - lots of possibilities. I talked to the neonatologist today, and she reminded me that this is the usual course for preemies. She said that we got a taste of how good they could do which makes this setback hard, but if they were able to do it before (be off oxygen and take their feeds well) then they can do it again. She also said that after a setback it takes awhile for preemies to get back to where they were - it's never an instant bounce back. We're still 3 1/2 weeks from their due date.

Ruby seemed to sail through the weekend. She finally made it to an open crib (current weight today is 4 lbs 7 ounces) and take all her feedings by bottle. They even took her feeding tube out! She was on course to come home this week, then she had a spell yesterday where she dropped her heart rate and oxygen. This means an automatic 5 more days assuming she has no more spells. They call this "spell count down." Since yesterday she has had a hard time keeping her oxygen up when eating. She seems to need to burp, but can't burp then holds her breath and stops breathing well. Today she kept dropping down into the 30's (normal is 90-100%) and turning blue. It was terrible. I was feeding her, and I felt so helpless. The nurse kept coming over and giving her oxygen through a mask. We would get her up and start feeding again, and it would happen again. The same thing has been happening with Millie, but since she has a nasal cannula the nurse just turned up her oxygen while I fed her. After the bad feeding with Ruby this morning, the nurse asked for an order to put her on oxygen while she feeds. Their nurse called me tonight to tell me that her next feeding went much better. So....definitely not coming home this week. That is fine with me. I don't want them coming home until they are stable. I was sweating and having terrible anxiety during both girls feedings this morning. It's just so crazy how different this week is from last week when they were downing their bottles without any problems and not on oxygen. Of course, they were not taking every feed by bottle, so maybe it has worn them out and they need some catch up time. Millie's weight today was 4 lbs 15 ounces!

Jake got new braces and shoes last week. His PT decided to change up the type of foot brace he has because he has been turning his foot out. He has not been as steady in his new braces, because he has to get used to a different feel in them. Starting last night it went from instability to actual limping. It continued this morning so we switched him back to his old braces. I went to school and his teacher and I watched him walk in his new braces, his old braces and barefoot and the limp persisted. I took him to the MD this afternoon. He does not seem to be in any pain, so we decided to give it a few days. Jake has broken his foot twice in the past so I am nervous about this, but both times he fell and I don't know of any specific fall this time. We're going to keep him in his old braces for a few days and see if it gets better.

Tomorrow I am taking Jake to the Children's Hospital at 2 to start his 24 hour EEG. This is where they put leads all over his head to measure brain waves and look for seizures. They will also have a video camera on him, so that if there is an event then they can see what he was doing at the time. He will be able to get out of bed, but not leave the room. Jake is very sensitive about having his head touched, so I am really dreading it. It's going to be very difficult to keep him entertained and keep him from pulling all the leads off. I also just realized that I will have to pump multiple times while we're there. Hope they don't get that on the video camera. Please pray that it will not be as bad as I am expecting it to be. Thanks, Elizabeth

Wednesday, February 8, 2012

2 Months (Almost)

Millie and Ruby will be 2 months old tomorrow. It's hard to believe that in a "normal pregnancy" they would still not be here. They both got their 2 month vaccinations yesterday and today. They split them up and the girls got 3 shots yesterday and 2 today. The girls did great and only cried for a second. The nurses gave them sugar drops to suck on which really helped. I was kangarooing with Ruby when Millie got her shots. They brought her over to me so I could hold her for a few minutes. She's still a good bit bigger than Ruby, but she looks huge in this picture because she is all wrapped up in blankets and closer to the camera. Ruby let out a few cries as if to say excuse me "sista" but this is my time. Their coloring is also different, because Millie is still a little anemic despite her transfusion.


The girls were also given orders today to take all their feedings by bottle (if they can). Millie did not finish her 11 am feeding, but she did well with her 2 pm, and Ruby was doing well with her feedings when I left. They will try to feed them with bottles, but if it takes too long then they can always put the rest in their feeding tubes. They won't remove the feeding tubes until the girls have proven they can take all the feedings without any problems. Still no word on actual discharge. Millie needed a little blow by oxygen the other night so this is another thing that cannot happen for 5 to 7 days before discharge, so we'll see. We'll have a better idea next week.

Millie from the Hood



Cookies for the Nurses tomorrow to celebrate the girls' 2 Month Bday
These were made by the talented Maggie Jackson of Sweet Cheeks Cookie Co!

Jake is still off his seizure medication. He is doing ok. He has moments of fussiness that we can't figure out but not as bad as it was when he was on Vimpat. His teachers say he seems a little more focused, which is good. We have his 24 hour EEG tentatively scheduled for this Tuesday, so Jake and I will have a Valentine's Day date at the hospital. Tentatively scheduled because we have to get insurance approval and this is last minute, but I wanted to get this done before the girls come home. Hopefully it will work out. 

Saturday, February 4, 2012

Open Crib

Millie made it to an open crib today. She looks like such a big girl. She has to hold her own temperature, so she is wearing a onesie, footy pajamas, and is covered with two blankets. We'll see how she does. Sometimes babies go back and forth for awhile. She weighs 4 lbs 6 oz! Just look at those cheeks filling out.


Ruby did fine with her transfusion. She did get some Lasix to help with the extra fluid, but she did not have to go back on the nasal cannula like Millie did with her transfusion. She weighs 3 lbs 11 oz. She lost a little weight during the transfusion because she couldn't eat, so now she is caught back up.

We moved rooms again. I thought we wouldn't have to move again, but the census is down and we're in a room with 4 other babies! I would be upset about the noise, but while I was there my girls monitors were beeping constantly, so we were making the most noise out of the 6. The monitors beep when the O2 sats drop below 87. My girls constantly go up and down. It is not considered a true "desat" unless they stay down and don't bring themselves back up, but the monitor goes off every time it drops. Very loud and annoying.

It's starting to hit me that the girls are actually going to be coming home. It has felt like such a long way off for so long, that I have put off dealing with the logistics of it all. Since we were out of our house this Fall, and I was on bed rest I never put together their nursery. Never fear.....amazon to the rescue and boxes have been arriving daily. They won't tell me when the girls are coming home because they can't, but I do know that when they can hold their temp in an open crib and take all their bottles by mouth then that's the magic ticket. I think it may be sooner that we thought.


Jake is doing better. He is currently off all seizure medication. He has been a little hyper, but otherwise eating better and not too fussy. His MD wants him to do a 24 hour EEG at Vanderbilt. I think that makes sense, because he has not had an EEG in several years. That will tell us if he is having subclinical seizures. I hope we can get this scheduled before the girls get home, but that may not happen. That will be a very "un fun" 24 hours, but we'll get through it. Jake is sleeping in our room for now on a little blow up bed. We're always on seizure watch, but right now more so than normal.

Wednesday, February 1, 2012

Ruby's Turn

Little Ru Ru is getting a blood transfusion today. Her hematocrit has been hovering just above the level that they like to transfuse, and she dipped down to the transfusion level today. Our nurse was able to get her IV in one stick and she will get two rounds of blood 8 hours apart. She can't eat for 24 hours, so she will probably not be very happy with that. I was able to give her her last bottle at noon today before they started giving her the blood. She is taking her bottles really well. She and Millie are both getting 2 bottles/day. Millie only took half her bottle yesterday, before she got too tired. Our nurses say that Ruby continues to be the feisty one! She weighed 3 lbs 11 oz today and Millie is 4 lbs 2 oz!

This is a picture of Ruby today. She is wearing a little hospital gown that Scott's Aunt Charlene made her. This was after our nurse got her IV placed.


Millie taking a snooze.


Although I worry about the girls all the time, Jake continues to be my biggest worry. He has had several episodes of "abnormal motor movement." It's hard to explain but he will kick his feet, slap his arm and roll his head around in repetitive movements. He has done it twice at school and once at home, but he did it for three hours straight at home. I am not convinced that it is not seizure activity, but his neurologist thinks it is a reaction to the new seizure medicine we started him on. He has been on it a few weeks and his mood has been so much better. The last two weekends have been great, because normally he cries/screams for 4-5 hours/day, and he hasn't done that, but now we have a new problem. We have stopped his medicine and we are giving it a few days to see what happens. If the episodes stop then I guess it probably was the medication. Today he had a small episode at school, then he was very weepy and almost listless at home this afternoon, and he has not been eating much. I don't know what to think. It is heartbreaking and scary, so we could use your prayers that we can find a solution.

Emmett has a cold this week. It only slowed him down for 1 day. Here he is taking a break with our dog Avery. Avery will be 13 this Spring and she is so sweet and lets Emmett crawl all over her.




Sunday, January 29, 2012

Small Setback

Spoiler Alert: Millie and Ruby are fine, but Millie had a little setback this week. Millie got her blood transfusion on Wednesday. The blood was given twice 12 hours apart. When I came in to see the girls on Thursday morning Millie's heart rate was hovering around 100 which is low for babies. She had also been put back on the nasal cannula with a little oxygen, because she had been dropping her sats as well. The MD came in, and said it was probably fluid overload from all the new blood, so he ordered a chest X-ray to make sure there was no fluid in her lungs (there wasn't), and then gave her Lasix (a diuretic) to make her pee off the extra fluid. That seemed to help and her heart rate improved. Just in case she had an infection going on as well they did not start her feeds back, so she got TPN through her IV line for the next 24 hours. They started her feeds back slowly yesterday, and by last night she was back on her full amount and doing fine. They also took her nasal cannula back off yesterday. She did get her first bottle yesterday and just like Ruby she did great. Ruby continues to get 1 bottle/day.

I haven't checked their weights from last night but the night before Millie weighed 3 lbs 15 oz and Ruby weighed 3 lbs 7oz. Ruby is also wearing clothes now!

Millie getting her first bottle. Sorry Millie when you read this one day that your hat looked so goofy!


The girls aren't even home yet, and I seem to be losing my mind more and more every day. I walked out of the house this week and this is what I saw:


That is Jake's cup of milk on top of my car which had been there overnight. Ha Ha I thought - can't believe I left his cup on top of the car. 3 minutes later as I got to the top of my street I heard a big "THUNK." My first thought was that something hit my car and then I remembered the cup. So I saw the cup, took a picture of the cup, then still left it on top of the car. It was raining so I kept going and didn't stop to look for it. Our nanny spotted it later that day in a neighbor's yard. I finally went back and got it the next day.