Wednesday, December 23, 2015

Home Again, Home Again!


We are home! Thank you everyone for your thoughts and prayers-your support was wonderful during our disappointment of being admitted again. And your prayers helped bring us home!

June acquired croup at the end of last week, which was disappointing since we have been saying no to visitors, washing our hands until our skin falls off, and changing clothes three times a day. Thursday night she had a barking cough and did not sleep well so Jason took her to the doctor Friday. We were given five doses of a steroid but told we should only need one. After four doses over the weekend, we called our pediatrician again on Tuesday. Since June should have been better, he wanted us to check in with surgery to make sure there was not a problem at her surgery site, for example, a constriction. We were able to get an appointment that afternoon, so I drove her over to Peoria.

We met with June's primary surgeon and the two nurse practitioners we have worked with often. June loved all the attention and praise she got about eating, but as we were talking about what was going on, her labored breathing was getting worse. She was working so hard, you could see the muscles around her ribs contracting, and she was getting very pale and turning purple around her feet. When they put pressure on her skin, the color (indication of blood coming back into the area) was returning very slowly - this is called blanching. 

They decided to admit her, and her doctor wanted to go ahead and do a swallow study to check out her repair sites to make sure she hadn't developed another fistula (obstruction) since June has proven to produce the unexpected.

Throughout being admitted and giving a rundown of June's history, they decided to give her some fluids to make sure she wasn't dehydrated since she hadn't produced a wet diaper. After a bolus of fluid, she still had a dry diaper so she continued to get more fluids throughout the night to rehydrate her. She was very dehydrated, but by mid-morning she started catching up. They checked her for MRSA since she had an infection while in the NICU. They also did a deeper swab of her nostrils to check for other respiratory infections, which came back positive for rhinovirus.

Rhinoviruses are the most common viral infections that are the causes of the common cold. Not typically something a child is hospitalized for, but in June's case, with her complicated medical history and trouble breathing, they wanted to keep her overnight. It also means isolation (and I had just been telling one of our NICU nurses it was nice to not worry about isolation when our nurse came in to tell us-mental head slap.)

June had her upper GI this morning to check how liquid flowed through her GI track. The good news is her esophagus is wide open so we do not have to worry about a dilation procedure for now. It is something they will continue to keep an eye on as she grows and starts to eat solid foods.

Jason and I learned how to replace the G and J tube in case her's ever gets ripped out. I never thought I would be learning to pull tubes in and out of holes in my daughter's stomach and small intestines. When we pulled the G tube out to replace it, stomach contents went shooting everywhere since she had just eaten. ( Needless to say, we now know I jump and cry out when fire alarms go off or stomach contents go shooting!) 

In order to go home, June needed to eat successfully. Her first feeding did not go well. She aspirated (breathed the milk into her airways) three times and had to stop nursing because she was choking and gasping for air. Luckily, the afternoon feeding went much better. They asked if we felt comfortable taking her home, and we were more sure! We were sent home with a nebulizer to give June breathing treatments to break up the congestion in her lungs.

We got excellent care-it's just different because they don't know all of June's quirks. In the NICU we were comfortable going home to shower, sleep and see Sawyer because everyone knew her (June made sure of that). But no one knew her history upstairs. Our NICU nurses would be proud of the thick, beautiful (that is quickly filling up) binder I brought with a copy of her medical history ready to go ;-). I now know God blessed us with June because he knew I had the OCD organization skills to handle her medical needs! 

Thank you again to everyone who reached out or prayed for us. Now that we are home, we definitely want to stay there!

Tuesday, December 22, 2015

Update


This is not an update we were hoping to write. We were so excited to have June home and celebrate Christmas as a family of four. Unfortunately, June was admitted today to the Children's Hospital in Peoria because of some complications. We are hoping (as are her doctors) that we will be home by Christmas. We will write more of an update when we actually know her prognosis.

Tuesday, December 15, 2015

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.

Thursday, December 3, 2015

Time Flies When You're Having Fun...

...Or too busy to even sleep.


I don't miss being in the hospital, and it is definitely nice to have our family all in one spot; however, I do miss the instant access to all the resources as well as the help coordinating all the appointments, phone calls and bills. And of course, we miss our nurses and the social interaction.  I do not leave the house most days except to go to doctors' offices.  Bringing home a NICU baby during the winter months can be very isolating - we cannot take her to the grocery store, the mall, church, etc... Hopefully, we get warm weather early so we can at least get out for some walks.

June is doing well with feeding - almost as if she is making up for lost time. When she eats, we have to vent (open) her gastronomy tube with a mic-key connector draining into a bottle.  While June eats for 15 to 20 minutes, about five to ten ounces of milk, saliva and mucus empty into the bottle.  We have tried not venting during feeds, venting every other feeding, and venting half-way through feedings to help her keep more contents in her stomach, grow her stomach and increase her caloric intake.  Unfortunately, if we do not vent her stomach every time the entire time she is eating, she ends up vomiting profusely an hour after eating.

Between the time June came home and the beginning of this week, she gained about nine ounces.  While the weight gain is good, it was not quite where the doctor was hoping it would be.  June's current weight keeps her in the sixth percentile.  We did find out that she was getting the wrong formula delivered.  We use the formula to mix with milk to feed June through her jejunal tube, which means she might not have been getting the right amount of calories.  Because June is having her food delivered so low in her system and the nutrients are not going through her entire GI system, she needs a specific formula made a specific way so the break-down of the proteins she is getting and the amount of calories will help her continue to grow.

We have a slew of doctors' appointments coming up where we hope to get answers about June's medical future. I am also spending a lot of my day on the phone with insurance, home health, and agencies, coordinating June's care, medical supply deliveries and applying for a medicaid catastrophe card.

Sawyer loves helping out with his big sister: telling me when she is crying, getting her pacifier, reading to her, etc...








Happy Thanksgiving! June is thankful for her MamaRoo (and so is mommy and daddy :))




Showing off her beautiful smile :)



Welcome Home June!

 







Four Months: November 23

Update will be coming soon, but first, June was four months on November 23.  More importantly, we got to take these photos at home :)

At four months, June loves to smile. (She really didn't want to showcase that in these glamour shots.)




She did not like sharing her time in front of the camera:







And she's bored with this photoshoot  so we are done: