September 2009

September 23, 2009

Charlotte is finally home! She's doing really well and progressing rapidly in therapy. Most of the function and feeling in her left arm has returned and she's feeling fabulous.

Maisie is, too. The inflammation has gone way down and she'll be starting formula through the tube again tomorrow. The bad news is that she tested positive for lactose intolerance. This is the cause of her inflammation and while it's good to discover, it means she won't be able to have breastmilk anymore. It's killing Charlotte to have to pay (through the nose -- this formula is expensive!) for something her body is supposed to provide for free. That's the way it is with Maisie. She's got her own plan for this world.



September 13, 2009

After the second scan and no food orally or through the NG tube, her intestines are still highly inflamed. So we're going to try a full ten-day course of anti-inflammatories intravenously as well as IV nutrient therapy.

The good news is that Charlotte should be home soon. Her casts are all off and she can come in for physical/occupational therapy as an outpatient. The only thing standing in our way is her x-ray tomorrow. If her hip has healed well, she's out of here!



September 10, 2009

Charlotte was finally moved to Hospital #2, and a couple of days ago she started occupational and physical therapy. Mostly, she had to learn to walk again as well as rebuild her fine motor skills in her left hand, which suffered the most neurological damage. She's coming back to herself, and her zany sense of humor is famous amongst the nurses. The giant pencils and buttons and things bear the brunt of her ruthless jokes. 

Meanwhile, Maisie's been doing okay. According to the stool analysis she is not absorbing nutrition the way she should be, which likely indicates dysfunction of the small intestine. Now it's time to confirm that the small intestine is the problem (and not the pancreas) and to figure out how to fix the problem. In the meantime, Maisie is getting a ton of high calorie formula and digestive enzymes to help her body process the nutrients. Here's the game plan: they took blood labs this morning, so in a few hours we will be able to rule out the pancreas as the problem. If they find no fault in the pancreas, we'll move on to testing the small intestine.

The good news is that even though she's underweight, her muscle tone is okay. She's weak, but for her BMI she's doing well. When we finally get some meat on her bones, she should start to bulk up and get big and strong.

Update: The blood labs came back and her pancreas is fine. The GI was concerned that her neurological failings are preventing her small intestines from absorbing food properly, but just in case he ordered a scan to look at her intestines. The radiologist informed us that her intestines are very inflamed, and she has a blockage just below her stomach. Hopefully all that happened was she got a small virus that inflamed her intestines but didn't give her a ton of symptoms, and now her intestines need to rest and heal before she can The only way forward is to rest her intestines by putting her on intravenous nutritional therapy until the inflammation goes down. They gave her a dose of an anti-inflammatory and scheduled another scan in three days. Hopefully that's all we'll need.

September 6, 2009

It's been a bad day.

The pediatrician wanted to have a neurologist examine Maisie again for brain damage and other neurological issues that might have been overlooked in the initial rush to save her life. The neurologist, a woman named Dr. Marcel, spent two hours evaluating Maisie on Saturday and we met with her today to discuss the results.

Because her gestation was interrupted so violently, the neurological connections between Maisie's brain and many of her internal organs are not fully-formed, which means that her kidneys, for example, won't ever function at 100%. Her left kidney doesn't "talk" to her brain as fast or as efficiently as the right kidney, and the same issue exists with her left lung and probably much of her digestive track. Dr. Marcel also brought up concerns about her fine and large motor skill development, because, just like with her mom, there is certainly some damage to the connections between her hands/arms and her brain. Unfortunately, at only three weeks old, it's almost impossible to tell how extensive or severe or permanent the damage may be.

The final bad news is that Maisie definitely experienced at least a small amount of brain damage that could cause problems with her memory, speech, and hearing. At its very worst, Maisie may never be able to talk or hear, and may suffer from amnesia. Her motor skills - including walking, eating, writing, reading, playing, zipping zippers, doing buttons, etc. - may be forever compromised.

I walked out of that meeting more depressed that I have been since the attack. I have no idea why that was helpful. We didn't learn much, and we won't be able to tell anything, really, until after she grows up. So why sit through all that sadness, and now have to steep in it while I watch Maisie sleep?

P.S. The stool analysis was taken today. No results yet.

September 4, 2009

The ultrasound went well in that Maisie slept through it so the technician was not disturbed. Her sleeping pattern is quite irregular so we had no way to know if she would sleep through it, but she did. The technician told us that her esophagus is, in fact, not entirely fused to her stomach. If she were eating by mouth like a normal baby she would be throwing up every time she ate and only getting something like 20% of her milk into her stomach. However, by a stroke of luck the NG tube went down the esophagus and through the small opening into her stomach. So while that will need to be fixed, it is not the reason she's not gaining weight. It does mean she probably won't be getting another NG tube, since it will be nearly impossible to place next time. But that's not the major concern right now, so we move to the next step, which is a stool analysis. That's about as pleasant as it sounds but thankfully neither Maisie, Charlotte, nor I will in any way have to participate.



September 3, 2009

After three weeks in the hospital, Charlotte is doing fantastic. Her bones are healing well, the bruising is turning a very unpleasant but positive yellow, and she's awake, alert, and feeling great.

Maisie's condition is stable, but not improving. This is good. I guess. It's frustrating to see her completely unable to breathe by herself or eat by herself or make any strides. The ventilator is very worrisome. This early in the game it's not unusual for a preemie to still be on a ventilator, but I've read some horror stories about the damage they can do to a baby's lungs. Make no mistake, the machine is saving Maisie's life, but it also causes a lot of scar tissue on the lungs.

Maisie has started taking breast milk through the NG tube, but because she is STILL not gaining any weight. At this point we are very worried about her gastrointestinal track. She'll be having an ultrasound tomorrow to take a look at her GI tract and see how well it's developed and connected. There are two possible reasons she isn't gaining weight, and neither is very positive. The first reason is that her GI track didn't develop properly and her esophagus is not connected to her stomach or her stomach is not connected to her intestines or her intestines are not able to processing the food properly. The other (more probable) cause is that her body is not using the food properly. She's not absorbing the nutrition or It's very much a no-win situation. If her lack of weight gain is caused by a developmental issue, it may be remedied with surgery but may also indicate other problems unrelated to the attack. A neurological food-processing problem is much harder to treat but is similar to her other symptoms and probably related to the attack. We are stuck between a rock and hard place, and we won't know anything until tomorrow afternoon.