Juliana has been very stable over the last week. She had her first eye exam since the surgery and her condition remains the same. We won't actually see any real results for about 3 weeks when the scar tissue starts to form. It's really good that there has been no change as her condition was progressing very quickly. She is scheduled for another check up today or tomorrow and the retina specialist will continue to follow up with her over the next two months.

Now back to her respiratory status. Juliana had to be re- intubated for her eye surgery and the intubatation was very "traumatic" according to the doctors. It seems that her air way is a bit swollen which made intubation very difficult. She still needs to have at least one more surgery where the surgeons will reconnect her intestines and reverse the ostomy. This won't happen for at least another 5 weeks. So the concern is that she will need to be re-intubated for that procedure and may also have some trouble if she is extubated now and then re-intubate later for that surgery. It's not ideal to leave her intubated until that time comes. So the plan is to start her on a short course of steroids to bring down any superficial swelling in her airway and extubate her tomorrow in the O.R. where the ENT specialist will be able to thoroughly exam her airway. If he finds that her airway is okay and shows no sign of Subglottic Stenosis (narrowing of the airway) then she will be extubated. If he feels that she is showing signs of Subglottic Stenosis then she will be re-intubated right there and a tracheotomy will be scheduled. The trach will actually give her more time to heal with out having to be intubated. She will have use of her mouth again and will still be able to get the ventilator support she needs.

Juliana is back on feeds again and is getting 1/2cc (like 1/2tsp) every hour continuous. Now I know this is going to sound gross but if it works it works. The plan is to take whatever output she gets in her colostomy bag and re feed it through a feeding tube placed in her second ostomy. This is offering the chance for her to better absorb the nutrition she needs from her feeds. She will still remain on her iv fluids because at this point it's really hard to measure what she is actually absorbing from her feeds and also because she is receiving such a small amount. Hope fully this will work for her till the surgeons feel she is ready to be "put back together".

Thank you as always for your prayers. Juliana is doing very well compared to where we were 3 months ago. She has gained quite a bit of weight and is now 1600 grams or 3lb 8 oz. I will try to post again in a couple of days, but as you know my life is very busy right now.

Another Surgery

I thought we were free and clear and on our way to recovery. Well that turned out to be false. Juliana had another eye exam yesterday and it turns out the in a weeks time stage 1 ROP (retinopathy of prematurity) progressed to stage 3. She will have laser eye surgery tomorrow. Hopefully this will begin to repair the the blood vessels in her eyes and save what ever retina she has. She will most likely need glasses but will hopefully not be blind. This surgery will lessen her chances of retina detachment from 95% to 20%. So, there is still a chance that the scar tissue from the surgery may become elasticized and pull on the retina. As always we hope for the best for Juliana. Fortunately the eye doctor was able to catch the ROP and PLUS disease at it's begining stage so she has the best chance of recovery if the surgery is done now.

Last Friday she had an upper g i test which went very well. For this test the surgeons put some barium into her stomach so they can see better in an xray if there are any blockage or breaks in the intestine. Everything looked fine so she started feeds of 1/2 cc per hour continuous and increased by a 1/2 cc per day up until yesterday. She started doing what they call dumping. This means that whatever is going in is coming out with out being processed or absorbed by the stomach and the intestine during digestion. Her output continued to increase so her feeds were stopped again and blood and urine cultures were drawn to determine if she is septic again. This was just done overnight so it will be a couple days before we can rule out infection as a casue of her dumping. I don't know what the next step will be if she is not septic. At this point my main concern is getting through the laser eye surgery with out complication.

Please continue to pray for Juliana. As you can see the battle is not over yet, but we coninue to fight.

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.