The peaceful day Trentman was having seems to be on hiatus again and he’s once again struggling with his reflux. We made sure he had all of his meds today but he still struggled with some discomfort. Poor guy- he just wants so much to eat and enjoy. Our caregiver Doris got the babies baby cookies and they just love them, Its funny, we can’t get Trent to pick up cheerios with his hands from his high chair (or at least not consistently) but he’s more than happy to grab the cookies. We wonder if it’s a tactical/fine motor skill thing. Sophie is the same way- more than happy to grab the cookie but she’s not able to grab the cheerios.
Tomorrow the physical therapist will come to our house to see the babies. We particularly concerned about Sophie’s continued arching and Trent’s ( give me a T) stance when he’s sitting in his high chair. My plan is to work at home in the morning so I can be here when the therapist is at our house so I can talk to her and see what else we can do to improve flexibility.
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Trentman had a tough day. He ate a lot of baby food and baby yogurt today but didn’t drink all of his bottles (I premake their bottles every morning before I go work every morning) today and we certainly could tell this evening. The poor little guys was SO unhappy. It just made us realize how important it is for him to have the new meds. I’ve always paid attention when mixing their bottle since they both get drugs in their bottle but now with Trent’s new meds I really have found I have to pay attention since two of his drugs are contraindicated and can’t be mixed. I cannot wait for the day when there are no more daily meds required. Unfortunately for Sophie girl, she may have to take her Keflex for up to 3 years or until her kidneys grown and urinary tract infections are no longer a concern. The good news though is that her blood pressure has remained stable at 86/54 and we’ve had no more problems with high blood pressure.
At long last we’ve scheduled a day for the babies baptism. While we will fully support the babies choosing their own faith and path for spirituality when they’re older, we do feel it’s important to baptize them as Catholics. There was a priest whom I grew very close to when I was in college who helped me work through my mother’s unexpected death and he has agreed to do the baptism for us. He’s now based at the Newman center in CSU Sacramento but will drive down for it. Having him baptize the babies means a lot to us and although not scheduled until April, we would like it to be a special day.
Today we had a wonderful family day. There were so many days in the NICU and those very scary early days where we talked to the babies about the things we’d get to do as a family – which made today all the more special. We took the babies out to Santana Row for brunch this morning, to the farmers market and then to the park in Willow Glen. What a wonderful day! They were both so good – talking to and smiling at everyone we saw. We feel so lucky.
Trent’s meds are definitely working now and he’s almost a different baby. Through my pregnancy and the baby’s birth we’ve always gone to the same pharmacist for the non-compounded meds and now it’s almost like she’s a friend. Even though we don’t we really discuss their medical condition, she can tell by their meds and is always interested in their progress.
We’re working hard on their exercises. Sophie is showing her stubborn side and gets very frustrated when we force her to stay on her tummy. She just wants to roll to one side and doesn’t understand why we won’t let her. It feels so mean to keep forcing her to stay in a position she doesn’t want to be in and having to say “no” when she tries to roll.
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Today we worked on getting Sophie to stay on her tummy and getting Trent to reach at the cheerios from while he sits in the high chair. The babies have this really neat toy that my colleagues them in the shape of a giraffe with all sort of things that hang off of him as his appendages such a tweeter bird sound in his foot, a mirror on his other foot, and a tail the babies can pull on. They both just love it but Trent can spend hours pulling at it. The funny thing is when we try to get him to do the same movements with cheerios in this high chair; he does the T thing with his arms and no amount of pushing them down works. Its so odd how he’ll totally go for a toy when he’s on his tummy but won’t even try to reach when sitting up.
We’re also pushing Sophie hard as well to reach and get comfortable on her tummy. . We prop her up in the boppy on the floor and put a toy out in front of her to reach. It’s quite a fight to keep her on her tummy and force her not to role on her the one side she favors. The odd thing though about her is that she’s more than happy to sit in her high chair and reach for thing. Although she’s not cheerios fan, the capture of them for her is a fun game- even if she just gathers them all together. It’s so interesting (and scary sometimes) to watch them both from a development perspective and observe how they approach different situations.
Today was a busy day for the babies. They had the RSV shot, visited Apple (mommy’s work), worked hard at they’re physical therapy exercises and had a bath. A lot for one day as it turns out (both could barely keep their eyes open at 8pm – 45 minutes prior to their normal bedtime.
At the pediatrician’s office, they also had a weigh in, exam and Sophie’s BP was taken. Seems funny that less than a year ago I didn’t even know our pediatrician and now we had a two nurses who know right away to take Sophie’s bp (both are former NICU nurses), two core pediatrician and the pediatrician’s in the practice who specializes in administering the RSV vaccine. Probably sexist but for whatever reason, there is a certain connection for me since all the doctors in the practice are women. I am also so thankful that they all have privileges at Stanford, have relationships with the Stanford staff and have helped us get to the right specialist when needed. They also have this amazing ability to get the right people on the phone when needed. Each doctor has also told me that our babies are the reason they became doctors – and have taken the places professionally that makes them glad they’ve had the training they do.
Trent has definitely turned a corner. Mr. fatty has gained 1/2 lb in the last week- now weighing in at 14 lbs 11oz. The RSV pediatrician who had pushed the GI team at Stanford to see Trent and had even joked with us seeing the department head that acted department head like (he didn’t even exam Trent and spoke about us in the 3rd person as we stood there) let out a big WOOHOO when she heard Trent’s weight gain. Its clear that the new meds are working and she wrote us a new prescription for us for the next 6 months. The growth curve is definitely going up and to the right as it should.
Sophie girl though had to see the down side of her growth. Unfortunately due to her weight, she had to have two shots instead of one. It was so hard to see her upset. The RSV procedure requires the baby’s temperature to be taken prior to the shot and then 20 minutes after the shot (to rule out reaction I suppose). Poor Sophie just cried and cried for 20 minutes. Being the baby who never gets upset, her “in pain cry” almost makes me cry.
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Today the babies had their weekly workout with the physical therapist. I know they’re small but the 45 minutes for each baby can be grueling. Trent showed the most improvement this week. His new discovery of his feet is quite an improvement as his overall flexability. Overall he also seems less stiff – perhaps due to new med and the deminihed reflux issues.
Sophie girl however is still having problems with her extremtities one side ( opposite her shunt- and probably related to it) The therapist has told us we have to really increase the amount of time she spends on her tummy – no matter how mad she gets and us for putting her there. During our last visit, the neurosurgeon had mentioned these inbalanaces when he checked her reflexes but I guess I didn’t realize how much htey would impact her ability to roll.
We let it be for tonnight since they were both so tired from their workout but tomorrow we’ll start pushing it hard.
Trent’s new drugs do seem to be working and helping his discomfort but unfortunately they haven’t been able to make his pain totally go away. The evenings seem to be the worst- between 6pm and 9pm. For whatever reason, the acid builds in his belly and it’s just hard to get it out. Tonight we were working on rolling. Sophie continues to want to roll just to one side when she’s on her tummy. It’s so odd and she gets SO FRUSTRED when she can’t do what she wants (like rolling the direction she wants). Tomorrow the physical therapist is coming and I’m sure she won’t be happy that we haven’t been able to get Sophie to roll on the other side. Trent on the other hand is Mr. Roll and now he’s also found his voice- giving us lots of ba, ba, bas and ahboos. I so hope this means that speaking just took a while and the hearing loss isn’t there at all – or is at least minimal.
The babies also were invited to the first Valentine’s Day party. The heart institute at Stanford is holding a party for all children who have had heart surgery. I guess I never considered the closing of the pda valve the kids had early on – heart surgery but I guess since a cardiologist did it- they’re part of the cardiac family at Stanford. We’re hoping that some of our friends from the NICU will be at the party as well.