Julia is back in the hospital

Dear friends and family,

Unfortunately, we had to take Julia back to Lucile Packard Children’s Hospital yesterday. She had four doctor’s appointments this week and it is probably a good thing she did because she could be checked out and it could be discovered that she needed some extra monitoring. Other than her not taking the bottle well and her usual stuffy nose, I was not seeing any major change in her. However, it was discovered that Julia’s O2 saturation levels were low. It is not something I could have detected until it got really bad. For those asking, “what does that mean?”
Oxygen saturation refers to the level of oxygen carried by red blood cells through the arteries and delivered to internal organs. As red blood cells travel through the lungs, they are saturated with oxygen. A low saturation level could indicate a respiratory illness or other medical condition. For Julia, it could mean her heart defect is not as stable and something is not going right.
Basically, Julia’s O2 saturations were in the 80s and they should be in the mid to upper 90s. This is bad- but it was not a critical or emergency situation. Yesterday at the pediatrician’s office when her “sats” were still low (after they were a bit low at both her 2 doctor’s visit the day before), Dr. Chen recommended Julia get a chest x-ray (do to her congestion and possible fluid in her lungs she wanted to rule out pnumonia.) She also talked to the pediatrician at LPCH, and it was decided that it would just be a good idea for Julia to be monitored more closely for 24 hours or so. So I took her in around 4pm after finding a friend for Mattie to spend the afternoon with. I ended up spending 7 hours at the hospital yesterday afternoon/evening. She was first admitted in the pediatric ICU and then after testing and doing an echocardiogram, it was decided she would be moved to the CVICU- which is the cardiovascular intensive care unit. It looks like there is an issue with her heart, not her lungs. It was a grueling 7 hours. Poor little sweet Julia was seen by a dozen doctors or so coming through. I had to tell Julia’s history and story with every one. She had oxygen put in her nose, she was hooked up to monitors with stickers on her chest as well as things wrapped around a finger and her big toe (the O2 monitors), she had to have 2 IVs put in, and she got the echocardiogram. On top of that all these doctors all had to take their stethoscopes and listen to her lungs and heart. She was awake for 5-6 hours straight because she was never left alone! IV’s are VERY difficult to put in her small veins (smaller than usual- like her mother’s!). I have never seen her cry so much. By 9:30 pm, she was SO DONE! Her eyes were red, she looked pale, and she was breathing really hard. I’m usually pretty tough- but I just couldn’t stand seeing her that way! I finally broke down. It was so hard. She would look at me right in the eyes with these pleading eyes as if begging me for help, asking me to make all these people go away so she could get some sleep. When she kept wiggling and crying through the echocardiogram, I spoke up and suggested that she be allowed to get some rest. She was over-stimulated and overtired. Also, because there were so many people coming in and out, it was over 5 hours before she got fed. I am certainly not complaining about the care she was getting at Stanford- because, honestly, they were all just doing what they had to do determine what was going on with Julia. I’ve been really impressed with all the doctors. But it was just really hard on her. And that was hard on me. I finally left the hospital at midnight.

So what now? They are playing around with some heart medications to help her heart as well as some other medications. They need to do some further testing to rule in or out various scenarios with her heart (some more serious than others.) Then after all that, they will determine if her heart surgery will be sooner or later. Ideally, they would have wanted her to be 10-12 pounds for her surgery. She is currently hovering around 8lbs. She will be in the hospital at least 3 days.

To top things, off, Mattie woke up with her ear hurting at 5:45am this morning (so much for getting sleep.) She has had a croaky voice and has started to cough in the last 36 hours. So she is probably getting or has an ear infection on top of a cold. We’ll be most likely taking her to urgent care today (or most likely Bob will.)

So please pray for
• Wisdom for the doctors
• Conclusive test results
• Strength and endurance for sweet Julia
• Rest for Julia
• Strength and endurance for Bob and me- as we are low on sleep, we will have to divide our time between home and hospital, as well as split up to take care of both kids who are sick
• Mattie’s possible ear infection- that she would get diagnosed, feel better and recover quickly
• Comfort and peace for Mattie who doesn’t like that her little sister is back in the hospital (and doesn’t like her Mommy at the hospital either.)

Praise:
• The doctors are so team-focused and really work together to come up with the best solutions for Julia
• The doctors really do seem to have Julia’s best in mind and have been very on top of things.
• The doctors and nurses have also done a good job in keeping me in the loop and sitting down to really explain what is going on. The pediatrician at LPCH spent a good 20-30 minutes giving me a lesson about all that was going on in Julia’s heart as well as listen to how I was doing emotionally and even cry with me (at 10:00 on a Friday night!) I have felt cared for as well.

We’ll keep you posted as soon as we know more.

Much love,
Val, Bob, Mattie, and sweet little Julia