Finding Our Groove

We are starting to find our groove with June's routine, and despite the additional work, things are going well.

June weighs in at 13 pounds as of Monday.  Her pediatrician was excited to see her weight jump from the 6th percentile to the 13th percentile, so he increased the amount of hours she is off her food pump from four to eight.  I was very excited about this because it means I can actually hold her while playing, feeding, bathing and putting Sawyer to bed while Jason is at work.  Before coming home, I bought a wrap to wear so I could have free hands to keep up with our busy boy, but unfortunately, I realized having my hands free was not completely possible when I had to wheel around her IV pole.

Eating by mouth is still going well for June.  At this point, she has only nursed, so we only have a few weeks left to work on trying to get her to eat by bottle before I go back to work.  While June eats, her stomach still needs to be vented.  We put her mic-key (tube that opens her G tube) in a bottle to monitor how much drains out, and usually, she ends up draining between 4 and 12 ounces in a sitting.

On Friday we headed back to Peoria for some follow-up appointments.  June had an ultrasound on her kidneys to monitor the blockage.  We also stopped by the NICU to reunite with some of our friends and see Santa :)  (Pictures of that to come - they are on J's phone and he's at work).

We also had an appointment with the neurosurgeon.  We did not get bad news but not the news we hoped to get.  The doctor mentioned a couple complications that are associated with TE Fistula, and that June may have an increased chance of having.  I've been learning not to Google (which is very hard for me since I like to research and read), but we have been talking to our nurses to get information and learn about symptoms, treatment and implications.  Right now, it is all just speculation so until we know for sure, I will not get into all the explanations.

Tuesday morning Easter Seals and Early Intervention came over for June's evaluation of her development.  Based on the therapists observations, she does qualify for services.  Right now, she will have physical therapy twice a month and another development assessment in three months.  The next fifteen months will be very telling of future medical complications June might face.  The therapists said that typically signs and symptoms will surface during that time.  The neat news is June's communication and observations are at a 6-month level (I think it is from all the practice she got in the hospital assessing what different people were going to do to her ;-) She definitely cried for certain people and smiled for others.)  She is more behind in other areas of development, which is expected since she was four weeks early and spent four months in the hospital.  We did set a goal of her to sit unsupported within the next six months.  The PT thinks this goal is completely obtainable in six months, if not in three.

June's stomach is looking much better!  Her scab fell off, and as you can see, her incision is almost healed.  While in the hospital, we had a split-second fear that she did not have a belly button.  But you can see below her incision there is a small semblance of one.  The clear button surrounded by gauze is her J tube (the tube we feed her through 16 hours a day).  Her G tube looks like the J tube - only it glows in the dark because that is typically how children are fed and it allows parents to hook up the tube without turning on the lights.  (Her G tube is under her onesie, directly above the J tube.)

 A couple pictures of June on her quilts:

Made by her great-godmother Judy

Sawyer wanted to get in on the picture

Made by her Great Aunt Jo Ann: The illustrations are
made out of the words of the nursery rhyme.

June practicing her tummy time.  We do not do too much of this because of her tubes, but we do a little protected tummy time to continue practicing her head/neck strength.