Today I took Sophie for her kidney ultrasound. I think I’m finally getting good a navigating the Stanford system. I was able to negotiate an earlier appointment for today (rather than next week) and am now able to greet the parking folks, admissions (which you have to do before each appointment at the hospital) and security staff with their names. It helps make thing easier to know our way around but not something I’d ever thought we’d be doing.
The ultrasound showed that Sophie girl’s left kidney is fine but her right kidney is a bit smaller than her left, is located in the middle of her abdomen (rather than on the right side where it should be) and is fused to her left kidney. The docs had asked to do a test to follow the blood flow for both kidneys but unfortunately because her right kidney is not in the correct position and located behind the her intestines, unless she’s sedated or is older (so she doesn’t move), there is no way to test the blow flow now. I knew that her kidneys weren’t normal but for some reason I wasn’t prepared for today’s news. I went into the test expecting a quick exam (much like Trent’s last kidney ultrasound) but this was different and we ended up being in the ultrasound room for over 2 hours. It was really odd. The technician did the exam and then went to review the pictures (asking me to wait). After 30 minutes – trying to keep both babies calm I thought perhaps I might have misheard him and that we could go – so I checked and they informed me that the entire test had to be repeated at the request of the reviewing radiologist. The technician kept telling me not to freak out but its hard not knowing exactly what the concern is. I called the renal clinic on my way home (the nurse is a friend of my wonderful neighbor Jean) and now knows us- so she said she’d page the doctor and let her know we’d done the ultrasound. We haven’t heard anything tonight so it doesn’t appear anything is urgent.
Tomorrow we go to the pediatrician for our check up and will have Sophie’s blood pressure rechecked. Should it need to be checked on a daily basis, I am going to ask our doctor if we can arrange for a home health nurse to come do it. I’ve tried to learn how but Sophie moves too much and I can’t seem to get a good reading.
Trent hung in there the best he could today but just hanging out on my lap for a couple of hours the last 2 days has really pushed him. Hopefully this weekend we can try to get back into our routine and have less stress on the babies.
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Today was a tough day for the babies. We started the day at the neurologist for Miss Sophie. The doctor was unable to come to any conclusions and was overly concerned about the head shaking. However, she said she’ll review Sophie’s last MRI later this week and would like to see her again in 3 months unless it gets worse. She said that many babies do the head-shaking thing until their 9 months and then it resolves. So for now- we’ll just hope that it’s nothing and keep watching her. The renal clinic was a bit more involved. Our appointment was scheduled for 2:15 but we didn’t get out until 5:30. I was so proud of Trent and Sophie- they hung in really well through the entire day. We got both good and bad news. The good news is that Trentman’s blood pressure is right where it needs to be and he doesn’t need to be seen again for 6 months. Sophie girl though is a bit more of a concern. Her blood pressure is a bit high and an area of concern. It’s so hard though to take a babies blood pressure because they had to remain still while the blood pressure cuff is on and that’s almost impossible to accomplish. After a couple of attempts though- Sophie’s blood pressure tested a bit higher than the docs are comfortable with so — they’d like us to get an ultrasound of her kidney as soon as possible. We know that one is horseshoe shaped – but they just want to ensure there’s no change it in from the previous scan done a few month ago. In addition, increased blood pressure can signal an issue related to her ventricles and so they renal team will now consult with Dr. Edwards team to rule out issues related to her hydrocephalus. The plan for the remainder of this week is to have our pediatrician take her blood pressure to determine if there is a trend and then determine a plan. It so funny how one day I can be concerned about one baby and the very next minute I’m concerned about the other. While things that come up are all scary, by far the thing that keeps me up at night is Sophie’s hydrocephalus. It seems like everything ties to it somehow.
The babies continue to amaze us everyday. They’re both big fans of their thumbs and it’s so funny to watch them suck them at the same time. Its funny- we think we see their secret language again when they do that. They both go for their thumbs at the exact same time. We finally heard from the doctor regarding Sophie’s shunt tap and as we expected (and hoped) nothing grew out and it was negative for any infection. We’re not sure what made her sick but she’s seem to overcome it nicely. Tomorrow is a big day for us. Sophie sees the neurologist for her head shaking issue at 9am (Dr.Edwards her neurosurgeon told us last week when we were there that “no, its not normal and should be checked out” so perhaps our instinct may be ok to push for an exam) and tomorrow afternoon is the renal team for both babies. Depending on our wait- we may end up hanging at Stanford all day so I’m planning to come prepared with toys, binkies, and food. We pray for good news and improvement on the renal front.
Today we attended the NICU grad party at Stanford. It was so wonderful to see Dr. Rhine – the first doctor who took care of our babies. He reminded up of the blood issue they had when they were first born (they were breaking down their red blood cells) and told us how many gray hairs he got over it. I now know that it’s not common for the head doctor from the NICU to see a parent in their hospital room or for a baby to have a complete blood exchange. However at the time Dr. Rhine came to talk to us about it- I had no idea. Thank goodness the issue stopped within 2 weeks of their birth and the full blood exchange wasn’t necessary. How unaware I was about the seriousness of our situation when the babies were first born. I guess it just shows how far we’ve come. It was so great to see some of the wonderful nurses (Sophie pictured with her primary nurse Diana) and the other families who were with us in the NICU. The bond we have with these people is none like we’ve ever felt before. Seeing old friends today reminded of how far Trent and Sophie have come and all the people who helped them get there. I hope someday that another preemie parent will read the form I filled out for both babies called “look at me now” and will be given the same hope we got from reading them during our journey.[[Image:the_kids/20050925-DSCN0483.JPG]][[Image:the_kids/20050925-DSCN0484.JPG]][[Image:the_kids/20050925-DSCN0485.JPG]]
Today Aaron and I saw the Trentman grab on to the rings in the bouncy chair for the first time. I know that it sounds silly to think that’s a big deal but we were so thrilled. He was so determined and focused. I went over and pulled on them so he could see that when he pulls the bird attachment will spin. I’m hoping he got the idea and that the next step for him will be to pull on the rings and make the bird spin himself. We worry so much about the baby’s development and every step forward feels like such a gift.
The pediatrician’s office called this morning to check on Sophie girl and let us know that culture from her shunt tap is still not back. She’s not quite back to normal ( still a bit fussy) but we’re hoping its just a bug and the fluid from her tap show nothing. I so appreciate the follow up and have now made a connection with one of the advice nurses. We are so lucky to have such attentive follow up and people who understand our situation.
Tomorrow we will attend the NICU graduation picnic. There’s a big bulletin board in the Stanford NICU with pictures of children at last years picnic with a binder that that outlines every childs progress and challenges. There were times early on in the babies life that the picture bulletin board and binder felt like a savior to show us that there was light at the end of tunnel. It’s hard to believe that we’re now attending the party and hopefully our journey will be able to provide someone else hope in the future.
Our resilient Sophie rebounded nicely today. She’s back to smiling at Aaron and I and we can tell she’s feeling more of herself. She started off the morning running a bit of fever but by the afternoon was almost back to normal. We’re still waiting on the results from her shunt tap but for now- no news is good news (although we did hear from Dr. Edward’s office today just to check on one of his favorite little lady). So now we’ve weathered our first illness with both babies. I cannot wait for the day when Sophie can talk and tell me what her symptoms are when she doesn’t feel well so we don’t have to worry that its her shunt. Unfortunately we’ve got a few more years of reading her cues so I just have to get better at it I think. When I was updating the physical therapist today with all that’s gone on this past week and said that I thought the whole” breast milk keeps babies healthy” was poppycock, she said that in most cases preemies get hospitalized during their first post hospital visit and we should count ourselves lucky. I guess so- but I thought that keeping them home, getting breast milk and being careful about outside interaction would keep them from catching things. Good learning for me I guess.
Today was the first time the physical therapist had seen Trent in 3 weeks and she was pleasantly surprised at his growth (his big fat cheeks) and his improvement movement. Unfortunately it’s hard for me to see their growth since I’m with them everyday. We also learned new exercises and tomorrow we’ll start using a medicine ball to help him with his arm movement and head control.
Today was a tough day for us. Sophie girl the baby who NEVER cries could not stop from 2:30am on and nothing we could do would sooth her. I called the advice nurse at our pediatrician this morning after I took her tempeture (over 100), told them I didn’t know what to do and they told me to bring her in. They tested her for a urinary tract infection via a catheter (the doc said she hadn’t done one of those since residency) and once it was ruled out- called the neuro team at Stanford. A fever and irritability can be symptomatic of a shunt infection or other shunt issues and our pediatrician wanted to be sure all her basis were covered. For the first time in months, the events of today pushed me to tears. Just being told that I needed to pack a bag for her in the event she needed to be readmitted to Stanford suddenly felt overwhelming. I wasn’t really sure what to get ready for her so I just got a few outfits and the stuffed pink bunny she got in the NICU for Easter that we keep in her crib. We saw Dr. Edwards this afternoon and Sophie’s shunt was tapped so that a septic work up could be done. The septic work up will rule out meningitis and other bugs. We were told we would be contacted tonight if anything appears out of the preliminary stain they did this afternoon (still no word yet) but it will take 24 hours for any bacteria to grow out. He said a fever is not symptomatic of a shunt failure and nor is she appearing lethargic (she’s just crying continually) so he feels that can be ruled out however, its still too soon to rule out an infection He knows Trent was sick last week and said he wouldn’t be surprised is Sophie got it too but the odd thing is she’s gone none of the same symptoms he had. Hopefully she’ll be better by tomorrow but if not, we’ll take her for a CT scan to confirm the shunt is working. Our fingers are crossed that Sophie wakes up her old self tomorrow and we can just go back to our normal routine.
Once again the secret language the babies seem to have kicked in and Trent couldn’t have been a better baby today. He was quiet and knew his sister needed his strength.