Spring and our growing girls

Spring has sprung, a little earlier this year. It has been so nice and sunny out and the flowers are blooming months early. It has been so nice to be able to enjoy this beautiful weather as a family. This time last year we were planning for Lily's upcoming surgeries, counting the hours since the last feeding and the minutes until the next one. We were waking to multiple alarms throughout the night and barely able to get outside to enjoy the sun before needing to return indoors for the next round of medication or the next feeding.

This has brought to light just how much our lives have changed in just one short year. It is amazing how laid back we are able to be, now that Lily is heart-healthy and unmedicated. We are able to travel for a weekend without a trunk full of feeding supplies, monitors, 10x as many clothes for the multiple changes Lily needed from her severe reflux. Brynlee has been in preschool and gymnastics since fall and loves it! Our doctors appointments have spread out to once a month or so, instead of once a week. The girls have been able to enjoy the the lemons from my iced tea and playing in the yard. I have found some great summer activities on pinterest to try out this summer. We are planning a water sensory day, planting a garden (one of us and one for the girls) and picnics outside.

Brynlee is four now and smart as a whip, there is no getting anything past her! She is very independent and helpful with her sister. She loves being able to play with Lily more and share popsicles and do things sisters should be doing. Her gymnastics and preschool are going very well and she has made lots of friends. It has benefitted her a ton being able to be around kids her age again. She is writing pretty well and has started sounding out words on her own. Sadly, she will be in preschool one more year, since her birthday isn't within the Kindergarten cutoff in our district. I think she is ready, but I don't mind keeping my big girl home one more year.


Lily is doing wonderfully. She just turned 15 months old now. She has beautiful thick, curly, red hair. She is walking and talking and loves playing with our dog, Zoe. She has been released from all therapy and her cardiologist has cleared her for yearly checkups from here on out. She is expected to last around 10 years until her next surgical procedure. She will need her pulmonary valve replaced at that time and throughout her life. We are so thankful that is all we have to worry about in her future. She has no limitations at this point and has been very healthy. She is completely free of medications and is now only seeing her pediatrician for her regular checkups. She has been meeting her milestones and is finally gaining weight. She is just over 18lbs now. She is eating very well, on her own. It has been about a month since her last tube feeding. We see the pediatrician tomorrow, let's pray for a weight gain! Once she is able to feed herself and grow sufficiently on her own for 3 months, she will get her G-tube removed. That will be one happy day!!

Happy Spring, to all of you! Sending prayers to all the heart families out there <3

Beautiful Song

I just wanted to quickly stop in and share a song with all of you. The artist is Matt Hammit and the song is titled "All of Me." See the first link where he is sharing the inspiration behind the lyrics:
Story Behind the Music - "All of Me"

When he mentions loving his child "recklessly" that really hit home and explained in one simple sentence exactly how I have felt for the last year and a half. This journey has taught me what love is, in a whole new way. Loving recklessly, is the only way. Not only in difficult circumstances, but always.


Please listen to the song and see the lyrics here:
"All of Me - Song and Lyrics"

Here is the family's blog: Bowen's Heart

Post Surgery Catch-up

So since I am completely behind and slacking Ithought I would catch you all up. Following the last post, Lily had more and more problems keeping feeds down even after being off of the antibiotics. Docs ordered an abdominal x-ray and it was confirmed that she had a post-surgical ileus (which is basically a mass blocking her intestinal tract.) These occur from anesthesia, the slowing down of the body's functions and the high doses of medications, especially sedatives.

They took her off of feeding completely and put

her back on IV drip for 24 hours. That seemed to do the trick. She was tolerating feeds fine after that. Once the feedings were going better we were able to take her for walks in the wagon and take her to the playrooms and hospital activities with big sis.

We attempted some oral feeding with no luck and knew if insurance would cover it we would be heading to the Children's Institute for the inpatient feeding program.

After a couple more days of upping the feeds and getting off almost all of the meds, Lily was doing fantastic. Her post surgical echos were exactly as expected. She has some Pulmonary insufficiency, but that is completely normal for a post Nikaidoh patient. Once we learned the feeding institute was excepted by the insurance, we made plans to arrive there on Monday. The hospital had to keep her until then, as she had to be transferred via ambulance.

This meant we had another weekend past when she was ready to be discharged. We were able to take her off all of the monitors except at night. She traveled to the cafeteria with us and we would hook her back up at bedtime. My friend Jen and her family visited us (8 hours away mind you... a true friend for sure) and we were able to take Lily on a day's leave to the Pittsburgh Zoo. It was so nice to spend some family time together outside of the hospital.

On Monday morning she was checked over one last time, the transfer team arrived to take us to the Institute to start her intense feeding therapy, and off we went. We hoped to get as much therapy in before her post surgical checkup with Dr. Rockstar and his team, scheduled two weeks from her discharge date.

Post-OP - Day two, three and four

So after the last post a lot has happened. She has been recovering so quickly, almost everything has changed. Friday around noon (right after the last post) they decided it was time to close her chest. It was very quick. They sterilized her CICU room, sewed her up, removed one of the chest tubes and that was that! I'm sure it's much more involved than that, but that is certainly how it seems from a parent's standpoint. It truly is amazing how quickly babies heal and even more amazing how pain-tolerant they are compared to adults. It is so hard to see your baby in pain, but so great each day you see progress towards going home.


On Post OP day two: Lily was extubated, like a champ I must say. She came off of most of her drips and by the en
d of the day she was only getting some pain meds and mild sedatives, but much less than I expected. She was also receiving some nutritive drips and maintenance fluids. She was still having some pain (to be expected, I think) but they were controlling it very well while trying to limit her narcotics. They removed her Somenetics sensor, foley catheter, one more chest tube and her HG tube. Throughout the day she was weaned from Hi-flo nasal cannula to a regular cannula without much issue, but didn't do as well trying to come off of oxygen completely. They started her feeds through her G-tube first on a pump then switched to her bolus (gravity fed) feeds. She was able to go from nothing to 90ml every 4 hours with no issues. She did have a low grade fever, in the evening. She has had a history of kidney and urinary tract infection, so blood and urine cultures were sent in and she was put on two antibiotics.

On Post OP day three: They decided she was ready to move to the cardiac floor. She had a routine chest X-ray, one last feeding, and we were off to "the floor." We have a larger room and she is allowed more visitors at one time. We have our own bathroom as well. From past experience I know that we will be doing most of her care (feeds, changing, etc.), where in the CICU we weren't able to do those things. This should help make it more "normal" for Lily. They check vitals less often, so it should make for quieter nights for whichever parent stays with her. She has had some problems with her feeds. Thankfully this has been her only real issue. The nurses have all been great both here and in the CICU. Couldn't ask for better care for our Lily-bug.

On Post OP day four: We are all settled in her new room. She is having more and more problems with feeds. She just can't keep seem to keep it down. We have decided to attribute her problems to nausea from the heavy doses of antibiotics. We will weigh her early in the morning to be sure she isn't losing weight. Hopefully when the side effects of the antibiotics wear off, she will be able to keep down her full feeds. It makes it harder to control her pain when you aren't sure how much of the pain meds she loses each time she eats... She has been very fussy tonight and finally kept a partial feed and one entire does of Tylenol. She is finally asleep and comfortable. I hope we can keep it that way.

The doctors here have given us an option of a referral to the Children's Institute, here in Pittsburgh. They have an intensive inpatient feeding rehabilitation program. It is very aggressive. Which is exactly what we are looking for. This will help Lily with her feeding skills and hopefully eliminating the G-tube as quickly as possible. It would be a two-week program. We don't want to be away any longer than needed, but this is a chance of a lifetime and I just feel like we would be crazy to turn down some of the best feeding specialists in the country. It hasn't been decided yet, but if it is a possibility, I feel like we HAVE to do it.

Will update again soon. Please keep up the prayers.
The Borders Family

Journey to 100 - Lily's Big Day!

Lily's big day has come and gone. It was a roller coaster of emotions. We arrived in Same-Day Surgery at 7:30am. Kraig and I were feeling confident and a bit of expected anxiety. Lily, on the other hand, was happy as a clam and just a bit sleepy. She was taken back to put on her over-sized gown and socks. We were thankful for the grips on the socks just in case she decided to take off walking on those slick hospital floors :) She looked very cute in her get-up, but it started to become very real for Kraig and I. Lily's Rockstar surgeon, Dr. M, arrived to talk quickly with us and to let us know he was feeling great about her surgery. We waited a while to meet with the anesthesiologist. At 10:00 they came in and went over the ins and outs of anesthesia and the heart and lung bypass machine. Kraig signed the dreaded release forms, we walked her to the end of the hallway, kissed and hugged her goodbye, and off she went. The worry started setting in instantly and we had a 5-ish hour wait ahead of us.

At noon-ish a liaison nurse came to let us know that they had all of her lines set (IV's, Arterial Line, Central Line, Foley Catheter, Ventilator, and NG tube) and they were getting her ready for heart-lung bypass. At the second check-in around 2:00 she said she went on bypass just fine and Dr. Rockstar was well at work on the surgery. At 4:00 we learned that the whole surgical procedure was done and they would be closing her up soon. While the rest of us were getting this news, Kraig ran downstairs and happen to run into the surgeon. He greeted Dr. Rockstar with "What the hell are you doing down here?" and was answered with "Well, I needed a snack!" He picked up a bite to eat while they were cleaning her up, dropped the two surgeons from Riley off at their taxi, and returned to the operating room. He returned to our waiting room about an hour later. He let us know that the surgery went as expected and that he had made the decision to not close her up. She had some issues with her Coronary Artery when they tried to close her up. This is not abnormal at all and they plan to close her chest sometime today.

It took about an hour before we could see her. We had prepared ourselves by viewing photos of other heart babies post op. Some may find this gruesome, but when you are in the place we are, it is important to use these hard-to-see photos as learning tools and for awareness. This is why I will be including her post op photos at the end of this post. I hope they are of some help to you in understanding the state Lily is in right now and for other families to prepare for their big day.

When we saw her for the first time, she was in the CICU and had two nurses at her side. She was stable. She had a mesh dressing over her open chest, three chest tubes, two exterior pacemaker lines "just in case," an IV, an arterial line, central jugular line, ventilator, foley catheter, oxygen sensor, respiratory and heart rate leads, Somenetics sensor, and EKG sensors pads. It was a lot to take in, but also exactly what I expected thanks to the other heart moms who posted post op photos. The best part was the triple digit oxygen saturation.... see the blue "100"

We decided to get some sleep last night since she will be completely sedated until her chest closure procedure. I called in about 2:00 am to check on her and everything was going well. They were tweaking meds to stabilize her blood pressure and had to put her on an insulin pump. Otherwise, she had an uneventful night.

I will quickly list her medications for all those heart moms out there...

NaCl

Insulin

Lasix

Cisatracurium

Nipride

Nitroglycerin

Epinepherine

Milrinone

Fentanyl

Precedex

We returned this morning around 7:30. She looked about the same. There was talk about closing her chest today. I prettied her up a little with some leggings and a headband and I think that made her feel better :)

About getting your new post notifications

I just wanted to let everyone know that if you are following Lily's blog through the email option, it is not updating like it should. To get better updates please click the "follow this blog" and follow the prompts. This will update you accordingly. Thanks everyone. I am getting ready to update with all of the information from yesterday's surgery. So check back soon.

Tomorrow's the Day

Well, we have made it to Pittsburgh with the help of my parents. After a MAJOR traffic jam, hotel mix-up, new hotel, an hour walk to find a kid-friendly place to eat, we did finally settle in last night. Lily was scheduled for her complete workup at Children's this morning starting at 9:00am. It's been a long-hard day. She started with an EKG and an echo. We then met with the surgeon who mentioned he wasn't feeling well and may need to post-pone the surgery until Friday, or later. He informed us that two surgeons from our Children's Hospital in Indiana (Riley Children's) were flying in to watch the surgery. This is both exciting and nerve-racking. It's great that it is a learning experience for them, but scary that her procedure is rare enough to fly out-of-state to join us. Then we went for a chest x-ray, blood work (took four people and five pokes total), and a meeting with cardio-thoratic surgery to be sure the surgery wasn't going to be moved back. They are NOT moving the surgery. We are scheduled for tomorrow morning at 9:00am. We are set up to start in day surgery at 7:30.

The anticipation is building. Tomorrow, our little girl's heart will be mended. She will be a beautiful color of pink and her strength and abilities will no longer be confined by her lack of oxygen. I can't wait to see that triple digit 100 on the oxygen monitor. Don't get me wrong this is the most frightening thing we have ever had to do, but if anyone can save our little girl and give her the long life she deserves, it's Dr. M. He has performed the most Nikaidoh's in our country and Lily will be number 26.

I will update when possible. They expect her surgery to last 6-ish hours.
Please send your prayers up for Lily and our family tomorrow.

The Borders Family