August 25, 2010 by Jen.

Hello to all of Juliana’s faithful followers! This will be a wordy update on her life.

Juliana is now 10 months old and 6 1/2 months old developmentally. She weighs about 13 lbs and is 25 inches long, perhaps longer by now. She is an angel.

We have her helmet now, which will correct the asymmetry of her head. She only has to wear it for 3 months, thankfully, but she doesn’t seem to mind it too much. She wears it for 23 hours a day and then gets a break each evening for her bath.

We went to the eye doctor yesterday and he checked her eyes. He says that her retinas are looking great! (Retinal issues are prevalent with babies who have had ROP.) Her glasses prescription has not changed, at least for now, and we figured out how to keep the glasses AND helmet on simultaneously. This is a huge relief, because we did not want her to go 3 months without her glasses. She sees things so much better with them, and she is more animated and interactive with them on.

Developmentally, she keeps on trucking according to where she should be with her adjusted age of 6 1/2 months. She loves to roll all around but is not quite ready to crawl. She is just about to sit on her own, and actually loves to stand. She is very stable on her feet, but nowhere near ready to actually stand or walk.

She smiles all the time and makes a cute little laugh that doesn’t quite sound like a laugh yet. She sleeps most of the night and loves to play all day long, except for a few brief naps.

Juliana has been eating some rice cereal (didn’t impress her) and butternut squash (she kinda likes). She still isn’t sure about swallowing stuff, but seems to do okay with the squash flavor. Next up: sweet potatoes.

I have started back to school, but I am only teaching part time this year. Jason watches Juliana until I get home mid-morning, and then I spend the rest of the day with her. She goes to faculty meeting with me for now, and we take a lot of walks.

She looks like a little aviator with her helmet and glasses on together, especially when she sits in her exersaucer and she looks like she is manning a huge control panel. Her exersaucer especially inspires her to “talk” very loudly. She also loves to play the piano and listen to music.

We’re sorry that the uploading photos part of the website has become so time-intensive that we have fallen off our regular posting. We’ll try to do better! Maybe more pictures to come later today or tomorrow.

Thanks for following Juliana’s progress. She is so sweet and wonderful and we thank God every day for her precious little life. Parenthood is just absolutely wonderful, and we are loving every second.

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June 3, 2010 by Jen.

Hello Everyone! I’m sorry that we are updating more infrequently now. We still appreciate all of your thoughts and prayers as Juliana continues to grow. Here is an update on what she has been doing in the last several weeks.

All doctor visits have been great. Juliana is a very healthy and happy little baby. She is 7 months old, and nearly 4 months old developmentally (adjusted age). She is still not on the growth chart, but her growth is tracking according to the curve, so although she continues to be small, she is growing appropriately. She currently weighs about 11 1/2 lbs, and she grew a remarkable 2 inches in length in about 2 1/2 weeks! She is 23 1/2 inches long. She is eating well and sleeping well. Her nighttime schedule is rather interesting: she usually sleeps from about midnight to 6 am, eats, then sleeps again until 10 am. This works fine for my current summer schedule, but we will need to adjust before I start back to HVA (teaching part time) in August. Throughout the day she giggles and coos, plays with her toys, and really enjoys reading books and watching her mobile.

The physical therapists are still coming regularly, and they say that she is progressing very well. Each time they give us a skill or two as her goals, and she meets them within a day or two of their visit. Yesterday she surprised us by rolling over! (There was a small cheat involved, as the surface was not entirely flat, but she has definitely learned the skill!) She has started to drool all over everything, which indicates that her saliva glands are kicking in to gear to start some solid foods in a couple of weeks. We don’t think that she’s quite ready to teethe, but we are watching for that as well.

We are currently monitoring the asymmetry of her head, due to the enforced positioning on her left side while her right leg was broken in the NICU. It isn’t severe, and we are hoping that it will resolve itself, but there is a possibility that she may have to wear a helmet for a few months, later in the summer.

We went to Tennessee in May to celebrate my brother Caleb’s academy graduation. It was Juliana’s first road trip. She did pretty well with the experience, although I think it would be a fair assessment of her feelings to say that she thinks 10 hours in a car seat should be considered child abuse. The family enjoyed getting to spend more time with our chubby little bundle of joy.

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March 23, 2010 by Jen.

Juliana has started grinning at us, in obvious response to our smiles and talking. She is so precious! Her hemangioma seems to be healing. The specialist at Johns Hopkins prescribed an antibiotic ointment and predicts that it will resolve itself in a few weeks. That’s great news! She weighs over 8 lbs now and is starting to sleep for 4 hour stretches occasionally.

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March 12, 2010 by Jen.

We’ve had a good week. Juliana enjoyed snuggling with her Grandpa and Grandma Minner, who visited last weekend. Then, the nurse who came to visit on Monday was not actually the physical therapist I expected, who will eventually evaluate Juliana’s development and put together a plan for her activities and exercises. Instead, it was just the case manager with a lot of paperwork to get us started. She was very nice, and she will be bringing the therapist back during the first week of April to do a thorough assessment of Juliana’s progress. So, stay tuned for updates in that area.

In other news, our weather has been gorgeous this week, and Juliana took her first walk! We didn’t have our stroller yet, so we just carried her around the neighborhood. She mostly slept.

Also, I have finally finished working on the nursery. My original design idea hinged on the concept of a “family tree” decal on the wall. Babies see the contrast of black and white better than colors, at least at first. So, I wanted to put up some black and white photos of her family’s faces, so that she can start to recognize people. Her grandparents, aunts, and uncles are on the family tree, and I put some more photos of Jason and me over her changing area. After much delay from orders gone awry, our tree finally arrived. Jason helped me put it up, and everything has come together. So many people have been helpful in assembling this room. My ideas have been carried out by my mom who made the beautiful curtains and crib skirt, my sister Katie who created and made a gorgeous quilt, my sister Megan and Jennifer Calhoun who spent hours helping me organize the many gifts from all of you lovely folks, and Ansley who helped me arrange photos. Mark and Jen Cook gave us their crib, which is beautiful and perfect for Juliana. A special thanks also to Sheri Tydings (and HVA) for the bookcase and for picking up our chair from the store and hauling it back to Hagerstown. Juliana is truly lucky to have so many people who care about her. She is enjoying being at home and snuggling with us in her rocking chair.

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March 8, 2010 by Jen.

We had another visit to the pediatrician today. Juliana weighs 7 lb 6 oz today and is 18.5 inches long. A surprising fact: she is now registering on the growth chart! Her length is still too short to be on the chart yet, but judging from her weight, she is now in the 11th percentile for her “real” age of 4 months. Yay! She’s likely to be on the small side for most of her life, but she has never been on the chart up until now!

The Maryland Infants and Toddlers program developmental lady is coming tomorrow to evaluate Juliana and start her on her physical therapy course, which is a free resource in our state. We’ll see how she does!

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March 5, 2010 by Jen.

There aren’t many things to report these days. Juliana is doing great in her new environment–home! She hit the 7 lb. mark on Thursday of this week, and she continues to love eating. We are slowly fazing out the Preemie clothing. It’s amazing to see her arms, legs, and (as many of you have already commented) cheeks getting chubby. It was hard to imagine her reaching this point, but she is starting to maintain actual baby fat!

I’m not sure if we’ve mentioned this on the blog before, but Juliana was born with a hemangioma underneath her left ear. This is a buildup of abnormal blood vessel growth that is quite common (occurring in approximately 10 percent of Caucasians) and often resolves itself. Apparently they are more common in premature babies and also in identical twins (which she is) than in other babies. Hers is between a nickel and a quarter in size. I was actually born with one in my eyelid which was surgically removed when I was 5 years old. The doctors believe that Juliana’s will go away on its own, but it has been giving us some problems recently. It is in an awkward location for the placement of her car seat strap, and it rubs on her clothes as well. As a result, it has broken open and bled a couple of times. She is currently taking antibiotics to keep it from becoming infected, and we have been referred to the pediatric dermatologist at Johns Hopkins, who is apparently the best.

Apart from this minor issue, Juliana is thriving and very happy. She likes to keep us up at night, particularly between midnight and 3 am, but she is generally a very sweet, content baby. It is wonderful to be home, and we are so blessed!

Grandpa and Grandma Minner are visiting this weekend, and they are enjoying snuggling with her as well. We hope you all are doing well. Thanks for your continued encouraging words and support.

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February 15, 2010 by Jen.

Today we began our new schedule of many, regular doctor visits. We will continue to see specialists at the University of Maryland to follow up on Juliana’s health. Today we met with her opthamologist, Dr. Soni. He checked her eyes for any residual ROP and found that she is 100% cleared! This is such a blessing! Although he told us 2 weeks ago that her eyes looked good, he still wanted to follow up to be sure. He wants to see her in a few months to check for nearsightedness, a common outcome for ROP babies.

Upcoming appointments include another pediatrician visit here in Hagerstown, and then back to Baltimore for a surgical follow-up, orthopedic follow-up, and NICU follow-up. We will also be receiving home health care nurses and physical therapists regularly to make sure that Juliana is progressing as she should with her growth. So far, she is a superstar (as already noted).

We continue to be thrilled with our home experience: we love bathing her, feeding her, and snuggling with her all day long. We are blessed to be warm and cozy and together.

Juliana received her first Valentine’s Day rose (from Grandpa and Grandma Minner), and she is slowly being introduced to many new sights and smells here at home.

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February 4, 2010 by Jason.

The feeding tube is out. There is no longer anything invading her body. We should have a countdown shortly.

Monday

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January 31, 2010 by Jason.

We had a good weekend with Juliana. Her surgery was a success with her hernia repaired and after a day of recovery, she is back to feeding well today. We anticipate a go-home date to be set this week.

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January 26, 2010 by Jen.

As if we weren’t already proud enough . . .

Today the Developmental Specialist came to evaluate Juliana. As an extremely premature baby, she has some challenges ahead of her because her “real” age is different than her gestational age. She should still be in the womb right now (38 weeks tomorrow), but instead, she is 3 months old. However, we can’t expect her to be doing what a full-term 3-month-old baby would be doing. So, it’s a tricky thing to analyze. Fortunately, they have specialists who can evaluate her progress and give us recommendations for how to help her progress and catch up to her gestational age by 16 months old, or earlier. The result of her evaluation? She is doing “amazingly well!”

The specialist looked at things like: eye movement and tracking with or without sound, hand, arm, foot, and leg reflexes, muscle tone, social skills (at this point that includes smiling–which she does!!), neck muscles, etc. Her leg and arm muscle tone is a bit tight, which is very common for premature babies, so the specialist gave us some massages and exercises to help her loosen up. However, with everything else she scored at 1-2 months!! This is amazing, since her gestational age is actually -2 weeks right now. Apparently she is a little superstar (but we already knew that). The specialist was very impressed with her and also credited the fact that she has had a lot of parent interaction from day one. We have already noticed that there are not many other parents in the NICU. It’s rather sad. For whatever reasons, the other parents are not able to be there, or else don’t want to be there. Juliana has benefited from our ability to spend hours, every day, with her. Her ability to smile ordinarily would not come in until 2 months after the due date, but she has had a lot of “face time” with us, so she has dramatically improved.

We are fortunate to live in a state where future physical therapy is free through the MD Infants and Toddlers program. We will be referred to our Washington County PT, and they will make house calls to continue working with her for the next 3 years, in addition to the University of MD NICU Follow-Up Program. This continued care should help ensure that she progresses well and catches up quickly to her “real” age. The specialist today said that she sees no reason to think that Juliana won’t continue doing brilliantly. The more we work with her, the more she will improve. We can do little exercises and massages with her every time we change her diaper, and we can work these in to other parts of her day as well. We are so excited to help her on her way. The specialist kept saying how impressive Juliana was. Of course I was beaming; I am so proud of her!

We are also going to begin a fun game called “The Sense of the Week.” Even though the specialist has never recommended it for a baby before the due date, she decided that Juliana is doing so well that she is ready for this exercise. Starting Monday we will get to bring in a different smelling item each day and give Juliana some exposure to the world outside the sterile NICU. Some interesting smells would be things like: perfume, marinara sauce, cinnamon, etc. We have to get approval for anything we bring in (some items might produce allergic reactions, for example, peanut butter), but the point is to have some fun introducing her to new things. Then we can move on to the sense of sound, or to visual stimulation or touch. We just aren’t allowed to work with the sense of taste. Obviously she is only allowed breastmilk. But we are looking forward to seeing her reactions to these new things! Maybe some fun pictures will result.

In other news, Nana Payne came to visit. She enjoyed holding Juliana today and watching the developmental tests. Juliana weighs 4 lb, 5.5 oz. She is slowly working back into her non-dairy milk feedings. Her hernia surgery is scheduled for early Friday afternoon. She is beautiful and sweet and the light of our lives.

It was a good day.

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