Extubated at last!

Finally Juliana has been extubated. Yesterday was a great day. I finally was able to see Juliana's mouth for the first time without a big blue clip over it holding her et tube. So far she has been handling the extubation just fine. She has nasal prongs that look something like CPAP but it is called NIPPV. She gets puffs of air through her nose at a set rate. When she moves on to CPAP she will get a steady flow of air but she will be in charge of the rate at which her breaths are taken. She has been sucking on her pacifer alot and even was mad at me yesterday when I took it out for a second. Her voice is still a bit hoarse but within a couple of days I should be able to actually hear her cry. Omar and I have been waiting to hear her cry since she was born.






















Since she has had a big change in her respiratory right now the surgeons are going to hold off till at least the weekend with their tests. The surgeons are going to perform a test on her intestines where they will put a dye into her belly and take an xray as it travels through her intestines. This way they can clearly see if there are any blockages and if each part of her intestines is functional. This requires a lot of handling which is why they will wait a few days to let her settle in to her new ventilator set up. They are being very careful as to when to start her feeds again. If she is fed too soon and her intestines are not ready she will get sick all over again. It is still very important that she gets off her TPN soon. The TPN is very hard on her liver and she will have to go back on Actigall to help her liver function but she can't have this medication unless she is feeding. Even though she is not feeding she is still gining weight and is now 2lb 10oz. I know it may still seem small to many of you but to go from 1lb 2oz to where she is now is incredible. She seems like such a big girl to me.























I am so proud of Juliana. She is really handling the change well. Congratulations to Juliana for taking one step closer to going home. Please continue to pray for her.

2nd Attempt at Extubation

On Saturday, Juliana started a third course of Dexamethasone (steroids) with the hopes of being extubated. She has been very stable over the last week. Her oxygen requirement is down in the 20's and occasionally at room air. She is still not back on feeds, but has been off the antibiotics since Sunday. The pediatric surgeons have been watching her very carefully and are waiting for the right moment to start feeding her again. Her abdominal xrays are showing improvement but not enough to make them feel comfortable with feeding her. So for now it's back to "wait and see". As we all know Juliana is the boss and it's totally up to her what happens next.

Infection cleared

Finally the cultures have stopped growing bacteria. It seemed like the infection was never going to clear. The cultures drawn on the 8th still show no growth. She actually had a few of her sutures removed yesterday and her ostomy is looking better. At first they were a really dark red and almost looked necrotized. Now they are looking more pink as they should. Not too much stool coming from the ostomy but she is also not being fed. Hopefully she will resume feeds in the next week. The doctors want to give her some time to heal on the inside. She is off her morphine drip and has not needed anything for pain except when they removed her sutures. She is up to 2lb 7 oz. (1100 grams). There has not been much change in her condition over the past few days. She is still intubated and will probably stay that way for a little while more. Her lungs are better than before and could probably tolerate her being extubated and put on CPAP, but her gut won't. So we are waiting for the condition of her intestines to improve before any changes will be made such as feedings and extubation. Please continue to pray for her.

1000 grams !!!

We've made it to 1000 grams or 2 lb 3-1/2 oz. After a week of no post this is the most exciting change in Juliana's condition. Over the past week cultures from her central line and iv have been drawn. So far every culture has had growth except for those drawn yesterday and the day before. I keep praying that the bacteria will stop growing. Infectious disease has been wathcing her carefully and are trying to find the right combination of antibiotics to rid her of the bacteria.

It's been a very hard week for us. The doctors had started to wean her morphine drip but today she seemed to be showing signs of pain so they have held off on the wean. She opens her eyes once in a while but spends most of her time sleeping. I am very worried that the necrosis in her intestines won't heal. Her stomas do not look too good right now. They are very dark but still draining (which I don't know if thats good or bad). She had an ultrasound of her belly and her kidneys and everything looks okay. It seems like we are at a stand still. Things aren't really any better but they are not necessarily worse.

Her respiratory is doing well. She has been in about 22-24% oxygen for the last couple of days which is pretty good considering room air is 21%. She will not be extubated any time soon as the CPAP (which is what she will upgrade to) blows a lot of air into the belly. As you can imagine blowing air into her belly will not be very comfortable for her especially with this being her second abdominal surgery.

It's been a very long journey and it's definitely far from over. We will just have to continue to pray and "wait and see". Thanks everyone for all of your support and prayers.

Another Surgery

Well after much progress we have had to take a few steps back. Juliana has not been tolerating her feedings any more. An x-ray was done of her belly and there is free air surrounding her intenstines. On Monday she went in for another abdominal exploration. They found tons of NEC (Necrotizing Enterocolitis) and had to perform an ostomy. What does this all mean? Necrosis is death of tissue. NEC, which is most common in preemies, is the necrosis of the tissues in the intenstines. As a result a perforation was formed. This perforation needed to be closed. Rather than simply fuse together the areas of the intenstines where the perforation existed, the ends are fused to the abdominal wall. This is done because there is still a chance that if they had fused together the ends were the perforation was removed, the tissues may still be to sick and another perforation will occur. Once the tissues are better they will reverse the ostomy, but this won't happen for at least a couple of months.

Juliana is also fighting infections. From the blood cultures drawn she is growing two different bugs. Her peripherally inserted central catheter was removed as this was thought to be a source of the infection. Unfortunately a culture was not able to be drawn from this line and we will never know for sure. In the meantime with all that is going on in her intestines and the fluid that she will need in place of her feedings along with the medications she is receiving a central line will have to be surgically placed. This line unlike a standard perpheral iv can stay in place for much longer (like 6-8 weeks) for as long as it does not get infected.

Some of her medications have been stopped like the Actigall for her liver function and the Dexzmethisone (steroids) for the inflamation in her lungs. She is currently taking two antibiotics Meropenim and Vancomycin. She is also receiving a morphine drip for pain and to keep her comfortable. She may be put back on Dopamine which helps to regulate her blood pressure but so far she has not needed it.

As far as her respiratory goes, she will not be extubated any time soon. In fact they have put her back on the oscillator (high frequency ventilator). I am not happy at all to see this machine back in our lives again. It is very noisy and shakes the baby as it forces short burst of air into her lungs. I hope we can make it through this. It's been a really rough 24 hours now. I am hoping we can get through all of this bad stuff quickly so we can move on to getting better. Please keep our family and especially Juliana in your prayers.