August 2005

The Trentman has had a very tough two days. He cried almost all through last night and continued to do so today. He appears to be in so much pain and nothing I do seems to help. Tonight I put him in the bath in an effort to calm him but it did little to help him. I continue to wonder if this is related to his early birth , reflux or his kidney issues. Should this continue through tomorrow, I will call the pediatrician. There has just got to be something more the doctor can do other than to tell me he’ll grow out of it if it is indeed colic. Little Sophie girl is so different. She’s such a calm happy baby. We’ve just got to find a way to make Trentman happier.

I called the nurse advice line at the pediatrician’s about Sophie’s head shaking. I expected a call back from the advice nurse but our pediatrician called me back. She said that moving forward for anything related to the babies I should just call and ask for her directly. She said that given the circumstances of their birth- nothing about any possible concerns is typical. It made me wonder if she wishes I’d chosen another pediatrician. She said head shaking isn’t symptomatic of a shunt issue and that if there was blockage or shunt failure that she’d have a fever, not be eating and acting sick. None of those things are happening. So for now, we’ll just watch it. I pray its nothing related to her neurological development. She said just to watch her and call her if it increases since we’re scheduled to see her next week. We’ll keep on the 2-week schedule for pediatrician visits until they’re bigger. I really hope this is nothing and its just one of those weird baby things. Sophie has come so far and continues to amaze us everyday- playing, smiling and eating like a horse.
The Trentman continues to struggle. Last night I had him over my knee patting his back for over 2 1/2 hours. The poor guy kept spitting up. I know he’s hungry- he just can’t seem to keep anything down. Tomorrow we go to physical therapy to keep working on his tight legs and arms. I just wish there was something I could do to make him feel better and make this easier.

Trent’s sleeping continues to improve. He’s still sleeping the swing but at least he’s sleeping and just waking up a couple of times to eat. When he gets upset he still sounds like a 3 pack a day smoker ( he coughs really hard as he’s starting to cry) but we’re hoping that goes away as he outgrows his colic and reflux. I’m increased his meds per our Friday visist with the pediatrician but its too soon for us to tell if there is improvement now that the doses better match his weight. Today we started augmenting feedings with formula to help keep the volume up the babies wish to eat. I’m doing everything I can to increase my milk supply but their both hungry all the time and no amount of liquid or herbs can help me produce enough milk. I’ll continue to feed them as much as possible but we also need to add formula to ensure they’re getting enough. We noticed today that Sophie girl shakes her head a little at certain times (think Katherine Hepburn during her later years). Aaron say’s its just Sophie trying to hold her head up but I’ve seen it a couple of times recently and the paranoid mommy in me is concerned. Our pediatrician probably already thinks I’m an overprotective mother so I don’t think she’ll be that surprised when I call to ask about this tomorrow.[[Image:the_kids/20050828-DSCN0436.JPG]]

The Trentman is running a bit of fever and has small bruises on his little legs from his shots. Sophie girl also has little bruises but so far no fever. I know every baby gets shots but it sure is hard to see the needle bruises when they’re your own. Today when we were at the farmer’s market a complete stranger came up to the babies and asked what was wrong with Sophie’s head. I was completely taken off guard and it made me realize that some day I’ll be explaining to Sophie why she has the shunt in her head. I’m so glad that she’s putting on weight and the tube from her head is no longer visible going down her neck or in her abdomen. She a funny little lady though- she’s such a happy baby (chatty and interested in looking at everything) and you’d never know that she’s had a rough start. I “think” (fingers crossed pleased) that we’re turning the corner on the colic. Last night the Trentman was able to sleep in the crib with his sister for most of the night and we all had a pretty good night. I’m hoping the closer we get to 9bls and 6 months, the more the colic goes away. On Monday we will hear the results of his recent blood and urine tests. I am so hoping they bring good news. Feedings continue to be a struggle (he’s just not that hungry) but we’ll keep at it to get the weight on him.

Today the babies had what was considered their 6-month check up (although we’re only 5 1/2 months). I can’t believe we they’ve been in our lives for almost 6 months. It occurred to me the other day when we were going to Stanford to see the renal specialist that we’ve now gone through all for seasons (or will shortly). Our issues started in February (winter), the babies spent all of spring in the hospital and part of the summer, and now we’re going into fall and although not still at Stanford, we certainly spend a lot of time there still. Funny how big life events make time go fast?
Both babies are doing fairly well -with appropriate movements and social signals for their age. Sophie girl weighed in at a robust 8lbs 14oz- out weighing her brother who is 8lbs 10oz. Sophie’s head circumference was measured and although her head has grown- the growth is right in the ballpark of where it should be for her age and weight gain. The was very good news for us as an abnormal head growth is an area we’ll always have to watch with her shunt. To look at them though, you’d swear the Trentman weighs more than Sophie since he’s such a little football. We did notice though that Sophie is beginning to get quite a belly. The doctor was fairly pleased with Sophie’s growth but is concerned that Trent is not gaining weight appropriately. She’d like to see him be 9lbz 4-5 oz when he’s rechecked in 2 weeks and I’ll now be pushing feedings every 3 hours whether he wants it or not. Its funny how a brother and sister can be so different. Sophie would eat 15 times a day if she could while Trent has to be pushed to eat. I’ll now also be tracking how much each baby eats every day to ensure they get at least 24oz everyday.
The doctor has also increased Trentman’s reflux meds in hopes that it will make eating easier. The both got 4 shots each and were little troopers about them and so far are not showing any side effects. Trent also got blood work and had a urine test to check his renal function. For the urine test they handed me a cup and I was concerned that I’d have to do some amazing catching but then the nurse attached a bag in his diaper so I just had to ensure I didn’t move him too much and dislodge the bag. I’m keeping my fingers crossed that the urine and blood work bring positive news about his renal function.
The colic seems improved a bit. Last night he slept most of the night and we were only up for a bit- just long enough to watch the “Flying nun”. Its hard to believe Sally Field was ever that young. He’s still sleeping in his swing but continued to do so even when the batteries died around 4am. I honestly think that if he had woken up I probably would’ve put him in the car and taken him to 7/11 to go get more D batteries to get the swing going again.
I so hope we’re turning a corner and he’ll start taking a page from his sister and just waking up a few times to eat.

Last night the Trentman went right down around 9pm and only woke up a few times to eat. Either he was pretty tired out from our long doctor visit or the colic remedies are finally starting to work. I’m personally hoping we’ve turned the corner on the colic. Perhaps his sister had explained to him that the mobile over the crib is very cool at night and he’d really enjoy hanging out with her all the time rather than the few hours in the am he does now. He’s still sleeping in his swing but I sort of figure- whatever works. We’ve definitely got to make a Costco run to stock up on batteries. Between their bouncy chairs and his swing, we now go through batteries like water. Tomorrow we go to the pediatrician for their 2-month boosters. I’m hoping the doctor will allow me to take Trent off some of his meds as well. He still continues to get 2-3 meds with each feeding and the renal folks recommended the pediatrician reevaluate since he’s been home for about a month now and it may be ok to get off at least one of the bone meds. In addition, I need to talk to them about nutrition since as I’m now having difficulty keeping up with the baby’s food demand with breast milk. They’re both hungry all the time and I’m wondering if we’ll need to introduce partial formula into their feedings to ensure their getting enough to eat. I wonder if the doctor knew what she was getting into when she signed up for the Keene family. Stanford’s recommended she be the main point person for all the blood work for both babies, coordinate all the specialist and track all the meds. It’s a lot.
We pray for good news tomorrow on their growth.

Today was a hard day for the Trentman (and for me). Another two hour wait past our appointment time to see the renal specialist. I know that I should be used to Stanford by now but still its a really, really long time to make an infant wait The canned response from every specialty we see that that Stanford is a teaching institution is beginning to wear very thin. The news we received today was good and bad. The good news is he’s made tremendous progress since they first examined him in the NICU. He’s gaining weight – he’s now 8lbs 9oz- but we’re not sure if his nutriction is where it’s supposed to be. That is something our pediatrician will have to validate later this week. But he is growing. However, the ultrasound showed that his left kidney is shrunken and blood flow is quite limited. His right also looks a bit enlarged. So, it appears from the tests he’s had to date that his kidney function is 2/3rds of where it should be. A full function study cannot be done until he’s bigger. There’s no immediate action to be taken but for now we need to watch his blood pressure for hyper tension (which would me his kidneys were failing), and he’ll have blood work to confirm that he is not spilling protein into his urine. We’ll also be followed closely by the renal team on a monthly basis for the next several years. Today’s visit just reminded me how much he’s already been through and the long road he has in front of him. Like Sophie’s hydrocephalus, I cannot help but feel guilty for putting our babies through this. We told the risks that could come with a premature birth when we begin to have complications with the pregnancy but now that I’m watching our little ones go through such big hurdles because of our incredible desire to be parents feels very selfish.