03/05/10 Update

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.

02/15/10

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.

rose.JPG

1/31/10

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.

Jen and Juliana

01/26/10 Superstar

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.

In repose

1/25/2010 Allergy

The doctors say it is almost certainly an allergy now according to her blood results. Jen got to feed her tonight and she will begin her lactose-free milk tonight. Jen has to give up milk for now as well. Her hernia surgery is also scheduled for this week, so she has a few more hurdles left before she can come home.

1/24/2010 Delay

We are going to be delayed into next week. Juliana showed some blood in her stool the last few days, so they have run some tests and given her some x-rays. Some of her bowel is dilated and thickened, which shows inflammation. They have stopped her feeds as of this morning and will give it some time to rest. The leading candidate of diagnosis is that she may have an allergy to the additive they put in the breast milk to make it more calorie rich. They will keep monitoring her and will repeat the x-ray tomorrow. Tonight she will get hooked up to TPN and lipids to keep her nutrition steady. She has gained some weight since our last update: 4lbs 4.5 oz. I spent the whole day with Juliana as Jen worked on the nursery at home. Jen will head back to Baltimore in the morning.

1/19/10 Zap Zap

Juliana had another follow-up laser procedure on her left eye today and the doctor says it went very well. We’re hoping it is the last procedure. She is enjoying her crib in satellite. Her nasal canula pressure has been turned down to 0.1 at 100% oxygen, exactly the conditions she would have if she needed oxygen at home. They are hoping to wean her off of it, but it is good to see she can tolerate a solution she could have at home. Breastfeeding is now unlimited, so Jen can be in the NICU every 3 hours if she wished. Jen is going to be spending as much time as she can in there.

1/16/10 Satellite

Juliana is moving into Satellite sometime tonight. Satellite is the room babies stay in when they are preparing to go home soon. We were happy to be in the “VL” (Very Low Birthweight room) for so long, but it was time to leave. Jen will be heading back down to Baltimore on Monday to continue breastfeeding and taking care of Juliana during the day. I’ll head back down next weekend after working this week.