Thursday, July 31, 2008

Wait and See



Juliana is now 19 days old and is still fighting. We have found out that she has an infection and is on antibiotics now. They have drawn more blood cultures and the infection is still brewing. Since removing the line where the infection started she has been improving. The nurses were able to wean her ventilator settings and she is requiring less and less oxygen. Until she is able to clear this infection the doctors will be unable to put in a central iv line. For now they are using two standard iv lines to give her nutrition and the medications she needs. Unfortunately these iv's are only good for a few days and she is running out of access points. They actually had to put an iv in a vein in her head as you can see in the picture.




For now and like it has been since day one it's just "wait and see". Hopefully the infections will start to clear up and the doctors will be able to put in a centralized iv. She also had an ultrasound of her stomach and she does have some type of fluid collecting. The doctors are not sure if it is blood or a collection of infectous fluid (an abscess). If it is blood then the treatment would be to let it clear up on it's own as surgery will most likely make it worse and cause more bleeding. If it is an abscess then they will have to either stick a needle in to remove the fluid or surgically go in to remove the fluid. At this point the doctors have decided to "wait and see". Despite it all Juliana is still growing and is now 660 grams (1lb 7oz). Please keep praying for her recovery.

Sunday, July 27, 2008

Preemie Steps

I am so happy we have made it this far. She will be 16 days old at 1:23 am. She is still very sick but she is not getting any worse. She is off of the oscillator ventilator and is now on a conventional ventilator. Right now the goal is to keep her ventilator settings low. The more work the ventilator does the more damage is done to her lungs. Unfortunately the ventilator is keeping her alive right now and we have to take the good with the bad. They have discovered that she has an infection in one of a UV lines (a line run through her umbilical cord which is used to provide nutrients and remove blood for testing). This line is scheduled to be removed but cannot till a replacement line is in place. They have tried to run standard catheter but her vein was not big enough. They will try to run one through a vein in her leg and if that doesn't work they will need to operate and surgically place a catheter line. We are really hoping to not have to under go surgery.

There is some improvement in her pulmonary interstitial emphysema although it is not much. There is not much more they can do for her lungs at this point. We just have to hope that she has enough fight in her to get better on her own. So for right now and for a while it is just wait and see. Everyday, every hour, every minute that she is alive just brings more hope.

Juliana opened her eyes for the first time early Saturday morning. Unfortunately, I was not there but she did open her eyes for us today. I was also able to hold her for a few minutes for the first time in her life. I have been waiting for this moment since the day I found out I was pregnant. Today was one of our better days in the NICU and I am sure there will be more to come. We have a long way to go still but we are taking preemie steps in the right directions. Please keep her in your prayers.

Thursday, July 24, 2008

13 days and counting

Juliana is 13 days old today and counting. She is still very critical but she is improving little by little. We have had lots of lung issues arise this past week. She was put on an oscillator last Wednesday to help clear the cysts she has growing in her lungs (also known as pulmonary interstitial emphysema). She also has been having a hard time keeping her oxygen saturation levels up. (This means that her blood is not getting enough oxygen). We have found that she had an opening in her heart which has been treated and is closed for now. They also found that she had pulmonary hypertension which means that the vessels in her heart were clamping down and restricting blood flow to her lungs where the blood is oxygenated. This is being treated with nitric oxide. So far this has worked for her and the vessels in her heart have dilated (opened). While dealing with all of the issues the doctors have found it necessary to give her vecuronium which puts the body to sleep. This helps to keep her calm so that the oscillator would have a chance to function without agitating Juliana too much. The side effect of this drug is adema (swelling). She is very puffy all over. She has been off the vecuronium for the past 48 hours now, but it will take a while for the swelling to go down. I will take some more pics as soon as most of the swelling is gone. She really doesn't look good right now. She is still getting regular doses of morphine and ativan for pain and anxiety.

Just today they removed her from the ventilator oscillator and she is on a regular ventilator which uses less pressure. This will hopefully help with the expansion in her lungs. The Emphysema is still present but has not gotten worse (not better but still not worse). For right now I am happy to see that she is not getting worse. There is very little improvement in her condition but any improvement is better than no improvement. She still has 5 more doses of the dexamethasone (steroid to bring down inflammation due to the emphysema in her lungs). All we can do right now is wait and see. Hopefully over time she will continue to improve. Please pray for her health and strength.
Juliana Maria was born on July 12, 2008. She is a micro preemie born at 1lb 2oz. 11-1/2 in 23 weeks and 4 days gestational age.