Natalie continues to do well. We just returned home from her first trip in San Diego. She did very well on her first “commerical” flight. We were nervous about the plane but kept reminding ourselves that she had been airlifted twice before. She loved the chaos of the trip and getting all the attention from lobbyists, senators, etc. Mostly, she enjoyed swimming in the incredibly warm pool at the resort and splashing her mom and dad. We have a cardiology appointment in about a week and a half and we will update everyone on her status. Wish us luck! BTW, we are working on a video of her first year. I’ll get my dad to post the video on the site. It is the first (hopefully the saddest) installment. Also, check out the new pics on flickr (see link in the previous entry).
We are so sorry that we have not updated the site in a while. Natalie is doing really well. Her heart is in great shape and she continues to grow each day. She is rolling over, eating solid foods and laughing a lot. She lights up our days. We are living Sacramento for the moment and hope to move back home in June sometime. For more pictures check out http://www.flickr.com/photos/picsofnatalie/. We update this site often. Thank you to everyone who keeps us in their thoughts and prayers. We can’t tell you how much it means to us.
Once again, Danielle’s maternal instincts are right on the mark.
Natalie’s sweating the other day wasn’t just from our warm apartment. On Wednesday morning, after a night of cold sweats and five hours of crying, we knew something was wrong. We called the doctors at UCSF again and within minutes Natalie had an appointment with a pediatric cardiologist in Sacramento.
Fortunately, the cardiologist said her heart is in very good shape. Unfortunately, she was showing signs of major distress, especially dehydration. The doc called an ambulance, and Natalie was taken down the street a few blocks to the hospital and checked in to the UC Davis Children’s Hospital Pediatric Intensive Care Unit.
We weren’t sure what was wrong, but Natalie was very dehydrated and irritable. After many many tests and scary suggestions of what the problem was, we finally figured it out by Thursday afternoon.
Natalie is suffering from withdrawal symptoms from the many different drugs she was given while on the ventillator at UCSF. Her symptoms were masked by the Tylenol with codeine she was given for pain, but as she received less codeine, she started fussing and sweating.
We went from terrified to extremely relieved. As we told others today, we never EVER thought we’d say “Thank God our daughter is just a drug addict!”
The plan is to keep Natalie in the hospital over the weekend as we begin her treatment for drug withdrawal (methadone) and continue to rule out any other potential issues. She is starting to eat breastmilk (which makes her and her dedicated pumping mother very happy). Natalie is now calm and acting like herself… smiling again now that we’ve figured out the problem.
Mom and Dad are wondering if they should ever unpack their hospital suitcases, but are hopeful that things will settle down soon. Natalie on the other hand, doesn’t know that she’s experiencing anything unusual (she thinks this is just how life is), and she’s too young to remember any of this. Thank God for that!
Natalie was discharged from the hospital yesterday and we made the much shorter drive home to Sacramento. She slept through the night and is finally taking naps during the day. The hospital is a difficult place to sleep. Just ask Mom and Dad! She has chylothorax again and needs a special formula called Tolerex. It is really disgusting. Our smart little girl refuses to eat it. As a result, she had a small NG (nasogastric) tube in her nose. We try to have her take as much as she will from a bottle and then put the rest through her tube. Luckily, the doctors think that she will be able to have breastmilk again in about a week’s time instead of six weeks. I am counting down the days for her since she can’t count yet.
We are busy trying to settle in and hopefully begin to put our lives back together for the first time in months. While we are anxious (Chris tried to shove a heart/respiratory monitor into our bag as we left), it is not quite as scary as the previous times leaving the hospital. However, I did call her cardiologist and nurse practioner because Natalie was sweating when I held her today. Chris came home and solved the problem by kindly pointing out that the thermostat was reading 78 degrees. Oh well, better safe than sorry. Hopefully as Natalie recovers, so will her parents. Thanks to all those who offered their support through the last few weeks. We could not have managed without it. We will continue to update the site. For more pictures check out http://www.flickr.com/photos/51692458@N00/.
Natalie had a great weekend. Since Friday, she has markedly healed by the hour! Then, the smiles came.
First, she gave us little half-smiles, reassuring us and letting us know she’d be okay. Then, the smiles became larger AND more frequent. Now, our happy baby is smiling so much, we’re beginning to wonder what we’re doing at a hospital for sick children. Thankfully, some of the doctors are feeling the same way!
Tomorrow morning, we should find out when we can go home. Hopefully, it will be very soon.
We feel so blessed and lucky to have such a strong and tough (and happy) baby girl.
Natalie graduated out of the ICU today and into the transitional care unit at the hospital. This is a huge step forward.
After battling sleep all night, the doctors figured out that in addition to her breathing struggles, Natalie was suffering from some minor withdrawls from the highly addictive opiate sedatives she was on while on the ventillator. Once they got the right mix, Natalie slept like… well, she slept like a baby!
This morning, after her much deserved rest, she was breathing so well, the doctors kicked her out of the Intensive Care Unit for being too healthy. Mom and Dad couldn’t be happier.
Now she’s back in her old room in the transitional care unit where she spent 25 days in November. This time, her stay won’t be nearly as long. If she continues to progress, we might be headed back to Sacramento in a matter of days.
Wooo Hooo!
Natalie is still breathing on her own, and this evening Natalie’s respiratory therapist took the ventillator out of her room in order to give us more space.
We couldn’t be happier about how much progress she made today. They’ve been slowly weaning her off of oxygen and are feeding her again for the first time in two days. She also had the last of her chest drainage tubes taken out today, another possitive step.
There was a devastatingly bleak moment in the icu today as the another family lost their baby to a heart condition. The family spoke very little English, but had been exchanging knowing glances and hopeful smiles with us over the past 9 days. We are so sorry for their loss. It is not fair.
Danielle and I are taking shifts throughout the night, comforting Natalie as she fights sleep. My mom and dad are spelling us too during the day as the sleep deprivation and stress is wearing us down.
However, today really feels like Natalie has turned a corner, and for that we all feel very blessed. (Knock on wood!)
- Chris
Progress.
Natalie was taken off of her ventillator at 11:00 this morning. She is now breathing almost entirely on her own, except for a nasal canula which gives her an extra boost of oxygen.
We’re thrilled at the progress, but still anxious since she’s not totally out of the woods yet. Her voice is nonexistent which is completely normal for someone who has had a tube in between her vocal chords for 8 days.
Natalie is tired and trying to sleep - taking little cat naps and being constantly woken up by the annoying nasal oxygen flow. She also has a bunxh of junk in her lungs which she’ll need to cough out over the next few days. Again, this is very common.
Danielle is taking a nap as she and I will likely take shifts with Natalie tonight now that she’s not so sedated.
Thanks again for all the kind posts, phone calls, emails, thoughts and prayers.
Natalie’s minor surgery to “tack down” her diaphragm went very well this morning. She’s back in her room in the icu and again sampling the many delicious drug cocktails offered at Club UCSF.
It’s important to keep her sedated so she doesn’t fight the breathing tube in her throat. Since anyone reading this knows Natalie’s parents very well, it will come as no shock that Natalie has a fiesty personality and fights back when things aren’t as she likes them!
The plan for tonight is to feed Natalie and let her get some rest for her extubation (taking out her breathing tube) tomorrow morning.
Today, in addition to her surgery, she had three chest drainage tubes removed, and now only has one remaining. This is really great news. Unlike last time when she was at camp UCSF, she does not have heavy chest drainage output, so once they can get her breathing on her own, she should be close to being ready to go home!
Keep your fingers crossed for Natalie tomorrow morning.
- Chris
As I write this, Natalie is in surgery to plicate or tack down her diaphragm. I probably didn’t spell that correctly. Basically, the phrenic nerve connects to the aorta and controls the diaphragm. When they operated on her aorta to fix her arch a week ago, they injured the nerve and now Nat’s left diaphragm doesn’t work making it hard for her to breath. It should be a simple procedure and hopefully they will take her tube out tonight. Mom and Dad are anxious and want this to happen soon. Natalie is very uncomfortable with the breathing tube and needs a lot of sedation to keep her blood pressure down when she gets irritated and to keep her from ripping the tube out herself. She has been very drugged and we really miss her. On a different note, we have been staying in the parent beds and Chris and I woke up with flea bites the other night. We are working on filing a formal complaint because that is just too disgusting. We will post soon to update.
