11/30/09 Milk

Today Juliana began to receive 1 cc of milk every 3 hours. For her first feeding, she digested half of the amount. She will soon get the hang of it. Her settings are similar to yesterday with no major changes. Jen was finally able to see her and is having some kangaroo time as I type this. She is going to try to do 2 or 3 hours, basically as long as they will let her! I am working a little bit today, first time in about 6 weeks. It is nice to get back into it.

I think someone asked in the comments how many visitors we have to our website. Well, I dug into the statistics and we have between 1,000 to 2,900 unique visitors each day! Wow, I never thought there would be such a large amount of interest!

11/29/09

I was surprised this morning to find that Juliana’s vent settings had changed from 38 to 28 breaths per minute. Her blood-gas was excellent which gave them the confidence to make that big change. She is breathing a lot more on her own and isn’t riding the vent as much. She was given some blood during the day to help with her crit levels. She doesn’t get blood as often as she did, so that is a good change. She had a stool this morning which decreased her belly size some. The x-ray just showed coils of gas, so she just needs to move some more meconium out of her system. My cousin Dina came and visited us this afternoon and we got to watch Juliana in her isolette. She wiggled around quite a bit for us. We’re looking forward to Jen being able to visit the NICU tomorrow.

11/28/09

Because of Jen’s continued low fever, she sat out from the NICU today. I spent a few hours with Juliana this afternoon, about one and a half in kangaroo care. She relaxed a little too much from the slightly damp spot on my shirt and chest after we were finished. 😛 I didn’t mind. Her rate has stayed steady at 38 though they have turned her pressure up to 15 over 5. Her blood gas has been okay, but not enough to warrant weaning yet today. Her belly is a little big, measuring 22 cm around. They considered giving her some milk today, but her usual waist size is around 20, so they want to make sure they know what is going on there before they add a new variable to the equation. They will be doing a routine x-ray on her abdomen to check out what might be going on. Her color is good and her abdomen is soft so there is no immediate cause for concern. Tomorrow I will probably get to kangaroo with her again. Jen is going to have to sit it out until her fever goes away for 24 hours. No fun for her but it is the safest choice for Juliana.

11/27/09

Jen and I are preparing to head back down to Baltimore, but we got an update over the phone. Surpisingly, they were able to turn her vent settings down from 46 to 38 breaths per minute. They also decreased her pressures from 15 over 5 to 14 over 4, basically less force going into her lungs. They will be starting her on caffeine soon, or what I call “Baby Starbucks”. This will help her get off the vent soon. Everything has been holding steady, so we are looking forward to seeing her tonight. I have a little Thanksgiving treat for everyone:

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Authentic Native American headdress, courtesy Aunt Katie

11/26/09 Turkey Day

We spent a little time with Juliana this afternoon before heading all the way home for Thanksgiving. She continues to do well. Her vent pressure was turned down to 15 over 5 and her oxygen continues to be in the 20-30s. They are slowly weaning her rate of respiration every 12 hours. While we were there, they turned it down from 46 to 44 breaths per minute. They hope to continue with this until they can get it into the 20s and get her off the vent. She also will go on some caffeine soon to get her ready to breathe on her own. Her blood pressure has held steady, and if it continues, we may see the start of some feeding soon. It very much feels like we’re moving into a new phase for her care and growth. Feels good.

Thanksgiving

So many things to be thankful for this year . . .

–a beautiful, precious, perfect little miracle baby Juliana
–the most wonderful and supportive husband ever
–amazing family members who regularly call, comment, and drive long distances to visit us and take care of us: we love you all
–our second family, the Howes, who are always here for us
–loving friends who constantly call, text, and visit. Alita, Jamie, Meredith, Nikki, and Cara: your continual encouragement gives me strength. Stephen and Robby, thanks for being you.
–friends from all over (even Ireland–thanks Gleesons, Sarah, Lesa, Maire, Tom, Claire, etc.) who have uplifted us with their kind words, thoughts, and prayers. Thanks Monica, Susan, and others for sharing your experiences. There are so many of you, but each of you has touched us with your support.
–our supportive and exceptionally generous church and school community: you have let us know that we are not alone, even when family is far away. The food and house cleaning has been such a blessing to us. Thanks especially to Sheri, Louann, and Sergio for constantly checking to see what we need. Thanks also to Jesse and Tarah for being willing to do whatever we need while we are away from the house.
–everyone at UltraCamp who has been working extra hard to make it possible for Jason to be with me and Juliana through all this. Dan, Adam, Alex, and Dave: you guys are awesome!
–my dear students who keep sending me cards and emails. I miss you a lot, and I appreciate your notes.
–an amazing medical team here at the University of Maryland. The doctors have been great and the NICU nurses are wonderful, especially Deborah, Renee, Rachel, Jenny, Michelle, Jen, Jane, Julie, and Iris. Cheryl has also been especially helpful to me personally. We love you all!
–a loving God who hears and answers prayers and continues to bless us, even when we don’t always understand His answers and blessings
–the hope of heaven and the reunion with our precious children Eden and Zoe, as well as other dear loved ones

Thanksgiving will never be the same for us. We’re thankful for so many things, and the presence of our miracle baby has given us an entirely new perspective on life. Thanks to everyone who has helped us (and continues to help us) cope with this experience.

Lots of love,
Jen

11/25/09 Recovery

Juliana has been recovering well today. Her blood pressure has improved considerably, so they took her off of the dopamine early this afternoon. Her blood gases have been excellent all day, so they may have the option to wean her rate slightly. Her fentanyl has also been turned down slightly and she has opened her eyes a few times to look at us. We’re very happy with how she is doing! We will be staying the night and visiting her tomorrow morning and then we’ll go home for some turkey dinner!

11/24/09 Success!

Surgery was a big success! More details later, we’re going to take a nap now!

Now for more detail. The surgery went fairly quickly. They made an incision in Juliana’s left side and closed her PDA with a titanium clip. We were able to see an x-ray later and it quite obvious in her chest. She will have this little piece of metal in her body for the rest of her life. After surgery, her vent settings were really mild which suprised us and the NICU staff. Since then, they have had to increase her support and make sure that she remains sedated and comfortable throughout the day. This evening her blood pressure was looking low, so they have started her on a dopamine drip to manage that. My parents were able to watch over her while Jen and I napped and we are glad that they are here. For tonight, the goal is to keep her sedation high and manage her blood pressure. So far, no surgical complications. We are done for the night and will try to rest for tomorrow.

11/23/09 Surgery

Juliana’s echo this morning showed that her PDA was moderate to large. We met with the cardiologist and his strong recommendation was to go ahead with the PDA ligation. We will meet with the cardiac surgeon a little later today to get more details about the surgery. It is currently scheduled for tomorrow, but we don’t know the specific time yet. I should be able to do some kangaroo today for a few hours, so I’m looking forward to that.

Update: We met with the cardiac surgeon and the cardiac NP. Juliana will be the first surgery tomorrow morning which puts her in the OR around 7AM. She should be finished and back in the NICU by 10AM at the latest.

11/22/09

This morning Juliana’s nurse handed me the stethoscope to listen to Juliana’s heart. I could hear a quiet whooshing sound along with the beating of her heart. It is clear that her PDA is still open, we just won’t find out how much until her echo tomorrow morning. I spent the afternoon with our friend Corey, another father in the NICU, at the Ravens game. The stadium is just blocks away and we were given very nice seats by a friend of his. It was a great game and a way to get out of the bubble of the NICU. When we returned, I found Jen and Juliana cozily snuggled in a chair. They were able to kangaroo for around 2 hours and then we came back to the Ronald McDonald House for dinner. We are anxiously awaiting our meeting tomorrow afternoon with the cardiologist to make the best decision for Juliana.