11/21/09

Juliana is having a good day today. Her blood-gas has been excellent and they will be turning her rate down slightly from her current setting of 48. Her oxygen level has hovered in the high 20’s to low 30’s, so she is really close to room air which is 21% oxygen. Last night, they took out her arterial line in her right arm. If you look at the picture below, you can see the white gauze wrapped around that arm to keep it in place. All of that is gone now, so her arm is free. They noticed that her fingers didn’t have that rosy pink color they like, so by removing the line, better blood flow can get to her little fingers. Her fingers are much pinker today. In rounds, they discussed her PDA again. The plan right now is to give her an echo on Monday morning to see the PDA’s current size. We will have a meeting with the cardiologist later on Monday to decide what to do. Our sense is that they will recommend performing the ductus surgery on Tuesday. We are okay with that.

11/20/09

Juliana is having a good day. Her oxygen is down to 27%, which is fantastic. (Remember, room air is 21%.) However, her rate continues to remain fairly high, to keep the CO2 levels down. We have set up a meeting on Monday with the cardiologist to discuss the possibility of surgery for her PDA. According to the nurse, one of the doctors today suggested that surgery was our best option. We will wait to hear the risk analysis on Monday and see what the specialists think.

They are also weaning her off of her hydrocortisone and trying to keep her fluid levels low to give the PDA as much support as possible to allow it to close on its own. At this point they don’t think that it will, but by lowering her fluid levels and administering Lasix, a diuretic, they hope to at least prevent the PDA from getting larger. She continues to have good urine output.

Click on the small pictures for larger versions.

Juliana

juliana2a.jpg paynesa.jpg jasonandjuliana2a.jpg

jenandjuliana2a.jpg jasonandjulianaa.jpg

11/19/09 PDA

The team met today to discuss Juliana’s PDA during rounds. Right now, they are in a gray area as far as making a clear plan of action. Her stats don’t point clearly towards surgery or towards closing on its own. The cardiologist and cardiac surgeon will be meeting a little bit later today to discuss further. We are hoping to get a clearer picture of the pros and cons of either decision. Right now we are in limbo.

Update: Juliana’s condition doesn’t require any intervention at this point. We are going to wait and see over the weekend how she does.

11/18/09

Juliana just got her heart echo a few minutes ago, so we should get a result from the cardiologist later this afternoon. Her CO2 has continued to be in the 50s, so her rate has been turned up to 58 breaths per minute. If her rate improves, Jen may be able to hold her later today. If it continues to be high, they can turn her up to 60, but after that she would require the oscillator again to blow off the excess carbon dioxide. We’re hoping she will turn it around today.

Update: The cardiologist reported that she still has a small PDA. Tomorrow morning they will discuss during rounds what the next step will be for her. I am not certain which way it will go, but surgery is a definite option. If so, surgery would be scheduled fairly quickly, as early as Friday is a possibility. We had planned on going home tomorrow for a night or two, but we will see what is in store for her first.

11/17/09

Juliana is having a good day today. They were able to completely turn off her dopamine drip which means she is able to maintain her blood pressure. They retaped her ET tube at about 4 since it looked a little loose, and now everything is snug as it should be. She has been holding steady on her respirator for the most part. They turned her rate slightly up to about 52 breaths per minute to blow off some excess CO2, but her O2 needs have hovered in the 40-50% range which is good. It has been as low as the 30s at times. She just received some medication in her lungs through what looked like an aerosol asthma type container. The name escapes me at the moment. Albuterol? That might be it. If she tolerates that well, Jen may be able to do some kangaroo care this evening. We joked about who gets to wear the button-up shirt today. Of course, it’s her turn today. I’ve been reading The Happiest Baby on the Block while sitting in the NICU. An interesting book so far.

11/16/09

Juliana received her second dose of Indomethacin at 6AM. A follow-up echo of her heart a little later in the morning showed that her PDA is now “trivial”. We hope that the 3rd dose at 6PM will close it for good. This afternoon I got to hold her skin-to-skin for about an hour and a half. It is amazing how small and light she is. She snuggled in and was very comfortable. They turned down her oxygen several times because her saturation levels kept maxing out. I can’t really describe how great and natural it felt, words fail.

11/15/09 Kangaroo

Juliana got an echo this morning on her heart and they determined that her ductus has closed somewhat but is still open to a small to medium degree. This is down from the large opening she had before her dose. The attending and cardiologist decided that they would give her a third dose of the indomethacin and redo the echo on Wednesday. The medicine is less and less effective the older the baby, but I think because it worked to some extent this weekend, they want to give it another try. Depending on her echo on Wednesday, we would then discuss surgery if needed.

The exciting part of the day was that Jen got to hold her for the first time this afternoon. She held her for a little over an hour and Juliana was very stable the whole time. It was a very exciting time and one we hope to repeat each day that we can. I may get my chance later this evening, depending on her continued stability and progress. After Juliana was put back into her isolette, she settled down quickly and we were able to wean her oxygen down to 37%, the lowest in a long time. I think she felt good being held by her mother.

11/14/09

Juliana received her final dose of the indomethacin at 5AM this morning. Her stats have looked really good today, and she is resting comfortably on her tummy. They will be doing a scan on her heart tomorrow morning to check the progress of the ductus. Since she is doing so well, they said that it is a possibility that Jen could do some kangaroo care tomorrow night! Kangaroo care is skin-to-skin contact between parent and child and is really good for both of them. Jen will get to hold Juliana for the first time. We’re crossing our fingers that it will happen tomorrow night.

11/13/09 A Ductus Reductus

After taking Juliana off of the oscillator, her nurse Jenny was able to listen to her heart without the noise and shaking. She heard a definite murmur and they went ahead and did a scan on Juliana’s heart. The cardiology report came back last night and Juliana’s PDA has reopened to a moderate-to-large size. This is not an uncommon complication for premature babies. The effects on her stats are clear, her blood pressure which had been steady for many days is low and is being controlled by a dopamine drip set to 10. There are two options for her. The first is to give her a course of indomethacin which can close her ductus medically. Indomethacin is most effective within a few days of birth, but can still work even now. The second option is a simple surgery to close the PDA. The team decided late last night to give her a course of indomethacin. Indomethacin thins out the blood and interferes with kidney function, so they gave her some platelets last night before the first dose to bump her level up and checked that her creatinine levels were normal. I expect that her first dose was given by about 5am this morning. A course takes 3 doses given at 24-hour intervals. If her stats are stable, she should finish by Sunday morning and by that afternoon we will know if it worked. If not, I expect surgery on Monday would be probable. We will be heading over to the hospital later this morning.

Update: Juliana has been doing well with her blood-gas and continues to use conventional ventilation. They have decided to move up her second dose to 5PM today and are administering it now. They will check her platelet levels tonight and plan to give her the final dose at 5AM. She will probably get a follow-up scan on Monday to check the size, if any, of the ductus.

We also got a brief report on a standard head ultrasound that they performed on Juliana. Apparently, she had a Level 2 Intra-ventricular hemmorhage sometime in the past. The blood that they saw was old, so i happened probably a week or more ago. A level 2 is concerning, but probably will not cause any problems in the long term. Her body should reabsorb the blood in time.

A few special organizations . . .

Hey Everyone,

You all have been so wonderful, and so many of you have asked if there is anything you can do for us. Generally the answer is that the best thing you can do for us and Juliana at this point is to continue praying as you have been. Your support is very special and meaningful to us. However, I thought I would write a post detailing some of the wonderful non-profit organizations from which we have benefited, and if you have an opportunity in the future to give money or service, these are some that are now very dear to us.

The Ronald McDonald House: serving families with seriously ill children. We stay at this very modern, well-managed facility in Baltimore for several nights a week for a small nightly fee. We have our own room, space in a very nice kitchen, access to laundry and other useful amenities. This organization, established by McDonalds, is such a blessing for families like ours who have to drive long distances to the hospitals where their children are being cared for.

The March of Dimes: conducts research about premature births, facilitates community services and advocacy to save premature babies’ lives.

Now I Lay Me Down to Sleep: the non-profit photography company that has made it their mission to reach out to parents of seriously ill children and take high-quality, professional photographs of the child in the hospital. They came to take photos of Zoe, and we will receive them in a few weeks, free, to use as we choose. A beautiful ministry.

The American Red Cross: blood donation. Although the babies haven’t used a lot of blood compared to an adult, they each received several transfusions, and Juliana will continue to get blood products for weeks. Giving blood is easy, free, and important. The Red Cross saves lives.

If you ever have the opportunity to give to or volunteer at any of these organizations, you will be contributing to a wonderful ministry. We are so grateful for the help that we have received from each of these services.