Off the TPN !!

Well, Juliana is doing quite well (for her at least). She has been doing so well with her feeds they are going to increase her to 10cc every two hours tonight and she will not get another bag of the TPN. Once she is done with what she has that's it. She will stay on the actigall for a while till her liver gets back to normal after the abuse it's taken from the TPN.

She received her first dose of the Dex (steroids) today and will get another blood gas later tonight. I am hoping that this is the last time we have to go on the Steroids. I would love to see her without the tube in her mouth. She seems to have a love hate relationship with it. One day she is pulling away from it and seems like she is trying to pull it out. The next day she is sucking on it as if it were a pacifier. I will definitely need to stock up on pacifiers with the way she was sucking on that tube. She is definitely getting her own character. I can't believe how far she has come. She still has at least 6 more weeks in the NICU as she needs to be 36 weeks gestation or more before she can go home. Right now she is 30 weeks but still counting and that is what matters the most. Keep us in your prayers.

48 Days and Counting

Juliana has been doing pretty well considering her history. She is feeding now and eating it all up. Everyday her feeds are increased by 1cc. She is up to 7cc per day and will probably go up to 8 later today. Her last weigh in was at 2lb 3 oz. which is almost double her birth weight. Once she is up to full feeds they will take her off the TPN.

Her lungs are sounding a little better but still not great. So the plan right now is to start her on a course of Dexamethisone (steroids) for 5 days. Like before she will get 10 doses over 5 days with each dose being less than the previous so that she will taper off the medication with ease. She had blood and urine cultures taken yesterday. So as long as there is no growth within 48 hours she will start the steroid treatment with the hopes of extubating her soon after the treatment is done.

She had a liver function test done this week and her numbers were a bit high so she is getting actigall twice a day and they will do another test in about a week to see how that is going. She may be on this medication for a few weeks. The TPN that she receives is also very tough on the liver so once she is off of it we will hopefully see more improvment. She is off the antibiotics with one dose left of the antifungal medication (fluconazle) which she will receive today. So for now she is only getting the actigall twice daily and will soon start the dexamethisone.

All in all she has made great strides and is well on her way to recovery although we will never be completely out of the woods. We still have quite a few more accomplishment to make but I am sure this tough little cookie won't crumble. Please keep her in your prayers.

Juliana has been having a fantastic week following her surgery. She is off of her blood pressure medication (dopamine) and she is still maintaining her blood pressure. We have also been able to lower her ventilator settings. Since she has been so stable, little Omar was able to meet his baby sister for the first time. After seeing her and all of her body parts (which we named), Omar decide that he wanted to adopt all of the other babies in the NICU. I am sure he would be a great big brother to all of the babies, but I had to explain to him that we only get to keep one (the best one of them all).

Now to the exciting part... on Sunday for the first time in her life I was able to hold Juliana in my arms. I will be able to hold her everyday for as long as she is stable and having a good day. We started Kangaroo Care yesterday which Juliana just loved. Kangaroo care is a way of holding an infant so that there is skin-to-skin contact. The baby, wearing only a diaper, is held against the parent's bare chest. This close contact is comforting and really helps stabilize her heartbeat and blood pressure. If only I could stay with her all day in the hospital.

Last night I got a call from the hospital which of course makes me nervous. Fortunately the first words the doctor said to me was "Juliana is fine". Through some type of error (not sure if it was human or mechanical yet) Juliana's TPN (total parenteral nutrition) which is administered through iv to give her all of the necessities (sugar, amino acids, electrolytes, etc.), was set at a faster rate. This means she received a lot of fluid too fast which brought her blood sugar way up and caused her to have some issues with her oxygen saturation. Fortunately Juliana is tough and has been through way more than a little extra fluid, but this does set her back a little. The doctor put her feeds on hold again (of course right after she was finally able to get some). She did not require insulin, but her blood sugar, although much improved, is still a little high. Her blood pressure did fluctuate some but not enough to put her back on the dopamine. So for now the plan is to let her work this out on her own. If she does not lose the extra fluid on her own there is diuretic on standby. I am sure like everything else we will get through this with a little faith and prayer.

Superstar!

This little girl with a big fight has amazed me yet again. She is doing much better than she was on Monday night when she was constantly desat-ing and require 100% oxygen most of the time. Since the surgery Juliana has had improved lung function. While only a small improvement any improvement is enough to celebrate over. She is being weaned off her blood pressure medication slowly with the hopes of actually feeding her. Tomorrow she will get an ultrasound of her belly. If all is well she will begin small feeds every four hours of about 1ml of milk down a feeding tube.


Today another one of her favorite nurses dressed her up. Although her incubator is climate controlled and she really doesn't need clothing, it's nice to see her in her clothes looking so pretty in pink. Especially since little Omar was able to see to her in person for the first time today. This outfit she is wearing was made especially for her by me. We are so excited to see her do well. The nurses are calling her a superstar. With all of the issues she has been through and is continuing to get over she truly is a superstar. We still have a long way to go. Please keep up the prayers.

More Surgery

Well this week has been very eventful and it's only Thursday. Juliana's nurse (one of our favorites) noticed a little murmur when listening to her heart. She has also had some issues arising lately with her urine output decreasing and had gained over 100 grams in one night (that's like 3 oz.). So the docs ordered an ultrasound of her heart and it turns out that her PDA (Patent Ductus Arteriosus) is back. A PDA is when a valve in the heart which normally closes shortly after birth remains open. She had already received a medication for this which closed it, but it is now open again. They could have given her another dose of the medication, but it is contraindicated for the other issues that she has in her intestines especially following the abdominal surgery she just had 11 days ago. So the only other option is more surgery.

Of course any type of surgery for Juliana's tiny body is going to be risky, but with the condition of her lungs being so poor this was even more risky. During the procedure the doctors put a small incision on her left side and moved the left lung to get to her heart. A tiny titanium clip (about the size of a staple folded in half) was used to close the valve. She was very stable throughout the procedure and her blood pressure started to improve almost immediately. We are hoping that this procedure will take a lot of stress off her heart and lungs and allow more oxygenated blood to get to her other organs like her kidneys that need it.

Her lungs are still very sick with BPD and the right lung collapse still has not resolved. Please keep praying for the healing of her lungs and overall health.

One Month Old Today!!!

Juliana is one month old today. The last couple of weeks have been very eventful. On Sunday, August 3, Juliana went in for surgery to have an abscess removed from her stomach. She handled it very well and recovery has been fine. The doctors cultured the abscess to see what she was growing and it turns out to be three different types of bacteria and a fungus. So she is still on Meropenem (antibiotic) and is also getting Fluconazle (diflucan) for the fungus. Her belly which was once very blue and firm is looking great. The color is back to normal and her incision is healing well. There is a drain tube to ensure that the abscess drains completely which is already starting to push out. As the wound heals it will gradually push the tube out.

Now back to the lung issues. It seemed for a few days that we were doing pretty well. She was slowly being weaned on her ventilator settings. Her oxygen requirement was down to somewhere between 35 and 45 percent (normal ambient air is 21 percent oxygen). Now she has a collapse in her right lung and BPD (Bronchopulmonary Dysplasia) in her left lung. The battle right now is how to treat both symptoms without making the other worse. As of last night she was in about 75 percent oxygen and requiring a bit more pressure. Just when it seems like things are getting better we take two steps back, but Juliana is a fighter. She has fought her way to one month and will continue to fight. Please keep praying for her recovery.