The babies continue to be incredibly busy but just watching them makes us smile. Sophie girl continues to struggle sleeping though. Last nigh was another 3am screaming event. It was tough but my strategy of having her snuggle with me on the couch in complete darkness. Thankfully it worked and we were both able to get some sleep. I wish we knew what it was. I feel like such a hypochondriac mother but I still thinking there is something there. She screams, she holds her head and she acts like she’s in pain. We’ve just got to figure this out.
Today Grandpa George and Grandma Carol (my folks) came to spend the morning with them so I could work at home. They took them to our local park and the babies were beyond over the moon. They just love my folks and love being with both sets of grandparents so much. Lots of play ground and playing in the sand with the beautiful day. Who could ask for more?
Sophie physical therapist Karen came at noon with Gayle Trent’s early Interventionist coming at the same time. It’s a lot of action but time well spent. My new strategy is move my car way down the street so they don’t hear me leave mid therapy and get distracted. Combined with ducking on the side of the house and moving briskly down the street – today it actually seemed to work. Sophie who continues to struggle with PT actually had a better day than we’ve seen in a while. I completely acknowledge that my daughter is beyond completely stubborn (which I know she gets from me) but part of me also wonders if her issues with PT is related to the experience she had at the clinic with Shauna and having bad memories attached to that experience. I know that sounds like I have rose colored glasses about my child and I really don’t but still it makes me wonder.
Trent is doing so well with his speech, talking and movement. He runs everywhere, has this incredible belly laugh and loves to be read to. They are both so special and each has their own personality but are both so very special.
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This weekend has been fairly quiet with the rain and me not feeling great. I don’t know what I do without Aaron. Yesterday all I wanted to do was sleep and all the babies wanted to do was play. Thankfully Aaron was home and more than willing to read and play as it just rained and rained outside. I know California needs the rain but thought of a rainy winter just makes me panic and realize I’m going to have to be very creative to keep the babies from getting bored.
Unfortunately Sophie continues to struggle with sleeping requiring the dog bed on Friday night and she and I to spend most of last night on the couch. I have noticed though that she can’t stand to lie flat and requests help to get up in her high chair. She is fine however if I prop her head up pillow and support it with my arm. Our new plan is to insert a stack of towels in her crib (thank you for the suggestion Jean) to see if that helps. I know the doctors have told me I’m out of my mind but I swear between the elevated blood pressure and not wanting (able) to lie flat- there has just got to be something there.
Today we took the babies to the 25th annual NICU Grad party at Stanford. What an amazing day. We saw several nurses and doctors we knew, enjoyed the petty zoo, (clearly a huge hit for our little ones) the magician show and the one-man band. The babies had such a nice time. Surprisingly enough the doctors we saw all remembered me. They all said, “ I recognized mom”. Somehow I don’t think it’s just my red hair. I’m sure it has more to do with the direct conversations we had about how we felt about our children’s care. Oh well, At least I made it I made an impression. It was neat to see other parents though. The gentleman working the petting zoo was using the hospital foam to have children wash their hands coming out of the petting zoo and each parent that saw it said “ OH THE FOAM- I REMEMBER TH E FOAM” – we all used it day in and day out every time after touching our children when they were in the NICU and it is forever burned in everyone’s brain. It was funny though. One of the docs who treated us in the NICU and we found kind of cold at first but eventually grew on us- recommended our pediatrician group. Apparently they all went to school together and she was the one who counseled us to get a group who had privileges at Packard. Anyway, she immediately picked up Sophie and danced around with her at the event and went on to check her shunt. Occupational hazard I guess.
The kids were so over the moon with all the balloons. They were one of over 40 sets of twins at the party. During intermission (between the magician and one man music man) Trent and Sophie decided they would go up on stage and entertain. Shortly there after they were joined by other sets of twins dancing around. It was so cute.
Aaron and I noticed how much older the docs looks and assured each other than we our frozen in time. Thankfully our children continue to make amazing progress. I’ve attached picture of today and our previous NICU grad parties. [[Image:the_kids/Ent923.JPG]] [[Image:the_kids/Pap@babies.JPG]] [[Image:the_kids/NICU3.JPG]] [[Image:the_kids/NICU21.JPG]] [[Image:the_kids/NICU1.JPG]]
It’s been a busy couple of days for the babies. On Tuesday we had early intervention for Trent and physical therapy for Sophie. Our early interventionist therapist Gayle always comes planned with activities and Tuesday’s activities were making a volcano. Trent was beyond thrilled. Sophie though continues to struggle with PT. I’m trying to build a strategy to ensure she gets the most out of her therapy so I intentionally gave her a very big breakfast so she wouldn’t claim hunger when the therapy got to tough. It worked somewhat but now I need to add moving my car down the street and perfecting my sneak out of house to my strategy. Hearing my car leave during therapy definitely throws both Trent and Sophie off and having me walk by our big front window just forces Sophie into a complete melt down.
Trent is doing so well with his speech. In October we’ll have our IFSP and I just know he’ll be discontinued. After some very direct conversations on my part and Lisa (our therapists) Sophie has been approved for speech. She’ll start in early October. We just have to work really hard to help her catch up.
Sleeping continues to be an issue for our Sophie girl. We have good nights and other nights (like last night) we’re up a good portion of our night. I can’t wait until the day comes where she can tell us if she has a headache. We’ve pulled out the blood pressure cuff and stethoscope so Aaron can take Sophie’s blood pressure on a regular (daily basis) so I can build a spreadsheet for the docs. Thank goodness Aaron had medical/EMT training and he’s quite ready to step up. We also bought them a toy medical kit since Trent wanted to play with the blood pressure cuff and stethoscope. He is so thrilled and keeps saying “ Look at me- I’m a doctor!” He is so handsome, well spoken and so intelligent. We are so proud of them both.
So I’m having another day where I’m reminded that parenthood can really suck. You had amazing highs (like yesterday) and then you days where you get really crummy test results and have moments with medical stuff that you can hardly understand or face.
Yesterday we took the babies to meet “Aunt Mary” at the surf museum in Santa Cruz. Mary is one of those people who came into my life years ago when I need a guardian angel a few years ago at Apple and even though our careers have gone on, she has definitely always been there as an incredible backbone. It met so, so much for her to finally meet them. There were so happy. We played for over an 1 1/2 hours watching the surfers and although quite with Mary, we heard “Where is Mary, Bye, bye Mary all the way home from Santa Cruz. Sophie was clearly taken with her and although Trent was shy and perhaps more into the surfers, he definitely chatted all about “meeting Mary” all the way home to San Jose. We are so blessed to have such amazing people in the baby’s lives.
Yesterday was also tough with the receipt of Sophie’s speech assessment. There are lots of technical terms involved but the overall summary is that Sophie is 8 months behind. 8 month’s, eight month- it might has well have been 1800 months when I read it and been all in BOLD. Wow. A lot to digest. Yes, I know she’s being but 8 months is almost a year and so hard to swallow.. Yes, I need to buck up and get Sophie what she needs but 8 months just sounds almost like a lifetime.
Overall between the delayed Speech dinginess and Sophie; s continued blood pressure issues (they continue to increase every time we Sophie’s so, it is higher. As amazing as our docts are, you can tell they are clearly calendared by the Stanford docs. Yes, the Stanford docs an amazing but how is it overtime Sophie is very accurate nothing does much. We have just got to crack this code.
Thankfully last night was a bit better. Sophie only cried for 2 hours and although Trent has been running a mild fever, he had a great sleep. Good thing since we had such a big day planned.
Today we took the babies to the Monterey Bay Aquarium. We had such an incredible day! I remember when the babies were in the NICU for so long we kept thinking about all the things we wanted to do with them once we got through the rocky start. Today was a dream come true. They LOVED the aquarium. They have a white shark right now that clearly owned the tank. Trent was completely enthralled. The fish that pushed him over the edge though was the sunfish. It’s a giant kind of unattractive thing and Trent was clearly afraid. Sophie seemed pretty much ok with everything but got a bit uncomfortable with the hammerhead shark. I think it was the size and the amazing view they had – right up in front of the glass. The other thing that intrigued them was a simulated wave in a tunnel. The first time it went off they both cried but we continued to stand next to it and they both gradually got more comfortable There were so many things to see- including hands on with kelp, starfish, and stingrays. They were both so excited!
We worried that they would get overwhelmed but they really held it together for over two hours. Sophie kept doing the sign for more (banging your fists together and saying more fish) and Trent was SO focused. He would hardly keep his eyes of the jelly fishing and octopus. He just sat on the floor and stared.
I can definitely tell differences though in their behavior. Trent is so much better at focus and can sit for long periods of time doing one activity and maintaining his focus on one thing (like the octopus). Sophie on the other hand has an incredibly short attention span and it was clearly evident today. We know this is due to her head bleed and something we’re working on but still it is reality and something that we continue to worry about everyday.
Given that it was a special day we also showed them the incredible bay, made sure they enjoyed the wonderful sunshine, enjoyed ice cream and managed to boogie to great music in the Steinbeck plaza. We continued to be thrilled to see the baby’s response to music. It’s become such an important part of our lives. We are so blessed
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Woohoo it’s Friday- I’ve never been so happy. This week really pushed Aaron and I as parents and as a couple. After our nanny called in sick on Wednesday I immediately went to buying Aaron’s parents property in the local Bay Area. Of course Aaron always the voice of reason got me back to we need to address with the immediate need of versus buying real estate. Clearly he has got this in 13 years of marriage and knowing that making a major real estate purchase on a high stress day probably wasn’t a good idea.
Needless to say we haven’t acquired any more property this week but we’re sure glad the week is over.
This morning they were so funny. They were so happy to go back to our regular routine. Sophie sitting in her high chair while I ran, 7am music, a little dancing in the morning and a relaxed breakfast. They were clearly not a fan of the very early wake up.
Trent still seems a bit under the weather today – wanting to go down early but Sophie seems more herself. Last night was yet another “adventure”. Crying occurred from 1-3am and 5am to 7. Thankfully at 5am I’m up and getting ready to run so it’s not like being woken up and trying to figure out a solution.
Our pediatrician is so wonderful. Early on when they took us on as clients they decided we needed two fulltime pediatricians and so we’ve been blessed to have two docs who know us. Today our regular pediatrician called to check Sophie’s status. The blood pressure thing is the biggest concern. We’re sure it’s her teeth but the elevated bp is still a concern.
In spite of our health issues, we still have big weekend plans! Tomorrow we’ve made reservations at the Monterey Bay Aquarium. We can’t wait to show it to them. On Sunday we’re going to meet our friend Mary. Mary was instrumental at helping me land at Apple when I was in a very bad place and has since been loving, supportive lady from afar. We can’t wait to have her finally meet the babies. We are so fortunate to have so many people who care about the,
Woohoo it’s Thursday. Yes, I know that sounds silly but it means Friday is tomorrow. Today was another strategic execution. Our wonderful neighbor Jean came over at 7:15 this morning to watch the babies so I could leave to make my 8am meetings. She had to take her mom to the airport so I just gave her my car and off they all went to the airport. Keeping our old SUV (Betsy) was one of the smartest things Aaron and I have done in quite some time. Having a 3rd car has been key in the success of schedule changes and baby carting.
Sophie had another hard, screaming for hour’s night last night. Aaron and I have now both officially achieved we look like hell appearance. Why is it these things happen when you’re already counting hour for hour of personal and a professional time – trying to keep it all together. This is so much harder than when they both were new borns and came home from the hospital. Of course I was on maternity leave so being tired was ok (I didn’t have a brain) and the worst thing I did during that time was forget Bella our dog at Starbucks. The working and having to have a brain at work makes it so much harder now. I took her to the pediatrician today and Dr. Oro reminded me that Sophie is always her mystery patient. Our babies were the smallest infants ever seen by Altos Oaks group we see and in light of that they have arranged that we have two primary pediatricians that work alternate schedules. The goal set up has allowed us to have a Dr. available that knows our children and their issues no matter what the day. So we’re looking at several possibilities. Sophie is getting molars (painful), she could be having night terrors, and her blood pressure is quite elevated. It was clear the nurse who always takes her BP was concerned and retook it 6 times during our visit but it was always the same. She’s been taking Sophie’s bp since she was 4lbs so it was hard for her to hide her concern. Dr. Oro checked in with the Packard neuro team and they said we just need to watch her although the elevated blood pressure could mean a headache and cranial pressure. We just want to avoid more radiation and a scan unless she’s acute. Poor Dr. Oro. She say’s every time Sophie appears on her schedule she knows it will be a mystery and she will have to pull out skills and expertise she hasn’t used since residency (she read up on shunt failure today and neuro exams before we arrived today just incase). We continue to pray for a complete quiet night of sleep.
When it rains it pours and of course Trent came down with a fever and rash today. Geez. Our poor little man. You can just see it in his eyes. Tonight on my way home I made a Longs run for children’s Tylenol and benadryl. Trent’s definite not his happy self but seems to be perking up a bit. Hopefully he’ll sweat out the fever tonight and tomorrow will be a new man. I’m sure the amount of mommy hugs he got tonight definitely helped.