12/17/09 Update and More Pics

When we walked in to see Juliana today the nurse and resident were beaming. (We really appreciate how much the doctors and nurses get excited over our baby’s milestones. They are all very supportive of us!) Juliana had just been moved from CPAP to nasal cannula. This little oxygen tube has prongs that go into her nostrils. However, they had to cut off the ends of the prongs because her nose is still so small. She had a few bradycardias throughout the day and some desaturations, but they think she will do okay with this new oxygen delivery system. She may switch back and forth between the CPAP and nasal cannula for the next few days. We’ll see. Her Fentanyl is slowly decreasing and her feeds have gone up to 6 ml/hour now, with additional calories. Her TPN (the intravenous nutrients that we call “Baby Gatorade”) will be discontinued tonight and she will begin to receive all of her nutrition from the breast milk. That’s a big step! She may also have her PICC line removed tomorrow, if she continues to do well with her feeds. She seems to be gaining about an ounce every day or so; the breast milk is really doing its work. She now weighs 2 lb, 9 oz.

We also continue to be very excited over her stools. She had two more today without suppository help. It’s great to know that her stomach and intestines are processing everything properly.

I (Jen) got to hold Juliana for about two hours, during which time she looked around wide-eyed and then settled in for a long nap. She seemed to be very comfortable, and we both really enjoyed the snuggle time. Near the end of her nap the Howes got to come in and see her for a bit, so that was a nice end to the day.

Juliana likes to open her eyes and look around (often while waving her arms), especially during her cares when the lights are bright. Here are some photos of her awake time today and yesterday. (Hint: click on the small photos to view larger size.)

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And a very special thanks to our visiting photographer Stephen Herr for the following photos:

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12/16/09 32 weeks

Today would have been the start of the girls’ 32nd week of gestation. It also is the average birth week for triplets. Juliana is 7-1/2 weeks old today.Her pressure has fluctuated between 4 and 5 on the CPAP. She is staying on it for now. Her feeds are up to 5 ml per hour. She had two dirty diapers today. While Jen was washing her face after changing her, she decided to stool all over her open diaper. We are hoping the Orthopedist fits her custom splint soon so we can hold her again. It’s been a pretty good day.

12/15/09

Steady progress today. Her CPAP pressure has been reduced to 4, the lowest level. Her feeds have been increased to 5 ml per hour and she is doing well with it. She stooled on her own at noon. She looks like a comfortable happy baby. Jen and I are excited because someone donated Ravens tickets to the Ronald McDonald house for this Sunday’s game. We will be sitting on the 10-yard line, 6th row. Awesome!

12/14/09

Juliana had a visit from the Orthopedist and the eye specialist this morning. Her leg is looking good and should be completely healed in a week or so. Her eye test results were good as well. She has Zone 2 Stage 0 ROP. That just means her eyes are immature and they see no problems yet. They will redo the test in two weeks. Her CPAP pressure was turned down to 5 and her feeds moved up to 4 ml per hour. She looks so comfortable in her isolette that I get to thinking she is enjoying this like a vacation. Unlimited pampering and all she can drink!

12/13/09 Visitors

We brought the Herr family to Baltimore to visit with Juliana. She is doing very well today on her CPAP. During her cares, we removed her mask and she was happy to just breathe room air at 100% saturation. Her next step would be a little nose tube, but her nose is too small for any of the tubes! We’ll see what happens this week. Her leg looks really great and we are looking forward to a good x-ray tomorrow and a good report from the orthopedist. All in all, a good day!

12/12/09 CPAP

Juliana graduated to the CPAP this morning. She now has a constant pressure of air with no “breaths” in-between to prompt her. It is the same concept as an adult sufferer of sleep apnea would have; the constant air triggers your autonomic system to keep breathing. Her feeds have also been increased from 2 ml to 3 ml. The best news today is that her right leg looks just like her left leg. All the swelling is gone and we hope that means it is healing up well.

Update: We talked with the night nurse tonight and Juliana is doing great! She had another stool at shift change which makes two in one day! She continues to be digesting all of her milk that they give her. Best of all, she is rock solid on her CPAP on room air (21% oxygen) with no desaturation or bradycardia episodes. Can’t wait to see her tomorrow!

12/11/09

Juliana’s leg looks less swollen today. The orthopedist examined her and readjusted her splint. The team is working on pain management to make sure it doesn’t bother her much. Her periods of bradying are over and she has a good heart rate, breathing rate, and pulse-ox. They turned her rate down to 10, and expect she will be on the continuous “CPAP” starting tomorrow. Her feeds were also ramped up to 2 ml per hour and it is all going down for now. That may seem like a large jump, but remember there are 33.6 ml per ounce! It takes her almost all day to drink one ounce. They will probably increase by 1 ml an hour each day until she goes on normal feeds. Jen and I are picking up the Herrs from the airport shortlyand heading home for the weekend. We will make some day trips down to Baltimore while they are here.

12/10/09 Brady

Juliana made it through the night well and continues to use the breathing mask. Jen is holding her right now and she is occasionally making little cries and even sneezed once. She received her last steroid dose this morning. The steroids have depressed her heart rate some so she is hovering between 95 and 130. Under 100 is technically a bradycardia so the alarms are going off frequently. They may turn the lower alarm down to 90 so it isn’t constantly beeping. Her oxygenation is 97-100 and her lungs are clear with no apnea. We are having an enjoyable time even with the klaxons. Her feeds have been ramped up from 0.4 ml per hour to 0.8 ml per hour! They are very happy with her progress and I’m looking forward to her rapid growth.

Update: Her leg looks swollen compared to yesterday. The fellow checked it out and ruled out holding her until her leg looks better. My guess is Monday since that is when Ortho will x-ray and check her progress.

12/09/09 Extubate

Sometimes matters are taken into one’s own hand, like Juliana’s for instance. She extubated herself at 7 AM, right at shift change. Instead of reintubating her one day before the planned extubation, they went ahead and put her on the bi-PAP. She is doing very well on it 8 hours into it. We will see at about 3 whether Jen can hold her today.