Monday, January 25, 2016

Six Months: January 23


Our June Bug is six months, and to celebrate, she maxed out her portion of our deductible for the year. Warning: Below are a ridiculous amount of pictures because we cannot resist taking photos of our adorable miracle baby and her cute big brother :)
















Girls' picture - we love our headbands






Monday, January 18, 2016

January Update

While in the NICU, the doctors recommended we keep June out of daycare for a year so she can build up her strength. We also had to pull Sawyer from daycare to limit June's exposure. Fortunately, both of our employers have been understanding of our situation, and we managed to work out a schedule to keep June at home. I work Monday, Tuesday, Wednesday while Jason stays home with the kids. Once I get home on Wednesday, Jason heads into work from 6 p.m. to 4 a.m. Wednesday, Thursday, Friday and Saturday night. The new schedule is a little chaotic, and we are both adjusting to how to handle June's care while giving Sawyer plenty of attention. The more difficult aspect to figure out is how to run errands or grocery shop since June should not leave the house.

After being hospitalized at the end of December, June lost a little weight, but she is now back on track. She currently weighs in at 13 pounds 9 ounces. Since she has been doing so well with weight gain, the doctor has reduced her hours on continuous feeds. She now gets 12 hours of continuous feeds, which is about the amount of time she sleeps at night. Yay for less time carrying around an IV pole and using less formula (since June has been prescribed a more expensive formula).

June started receiving physical therapy from Easter Seals. When Early Intervention Services evaluated her in December, we set a goal of June sitting unsupported within six months, so hopefully, by June (the month :)). We have been working on some protected tummy time, and during the P.T.'s first visit, we got some exercise to work on strengthening June abdominal muscles. June can look left, but her left side is tighter because she spent four months looking right (to see what medical professional was coming in to do what to her). Our P.T. gave us some exercises to help loosen up her neck muscles on the left. Our P.T. has three children who went through the NICU and had g tubes, so she's had some helpful suggestions with our transition home and June's potential future needs.


June had a cardiology visit at the beginning of the month. She had a echocardiogram, an ultrasound test that picks up echoes of the sound waves as they bounce off different parts of your heart, and an ekg test to check for problems with electrical activity of her heart. The cardiologist said that when he listened to her, he could not hear a murmur, but asked us to ask other professionals at the different doctor appointments we have. The images of the echocardiogram were a little blurry since June loves to kick her legs when lying on her back, but he said it looked like the tissue in her heart had actually closed her VSD (the hole in the lower chambers of her heart). Her ASD (hole in the upper chambers of her heart) has been downgraded to a PFO (a patent foramen ovale), which is a hole in the heart that didn't close the way it should after birth. An ASD is larger than a PFO, and for a majority of people with a PFO, it is not a problem that needs to be surgically fixed.

Her PDA is still present, but the doctor we saw said that he would not recommend surgery to close it, which is different from the cardiologist we saw in the NICU, who said we would need an outpatient, noninvasive procedure to close her PDA by the age of three. The one risk we have with the holes in June's heart are that she has an increased risk for heart infection. The results were so good, the cardiologist said she may be released from their care in a few years (originally, we were told she would need a cardiologist for life because of the type and location of her VSD).

With our change in insurance on January 1, we have had some complications with getting her Synagis (a booster shot to help protect June from RSV) covered. We have to be even more diligent about showering after being outside, washing hands, sanitizing, cleaning, etc... to protect her these next couple months.

Despite everything, June is such a content baby. She loves watching her brother and dogs, and she gives her mom and dad the biggest smiles (that we can never capture on camera). She loves to talk and giggled. Her NICU nurses will be happy to know she hasn't lost her flare for dramatics when it comes to getting what she wants (especially that lower lip that sticks out and trembles).




Sunday, January 17, 2016

First Christmas

Just lots of pictures of our first Christmas together:



Oh the joys of trying to take a family picture with all six of us:











 Christmas with the Wellens








 Our first Christmas as a family of four:







Christmas with the Kelleys: