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

The Big "Catch-up"

As many of you know, we welcomed our second daughter, Lily Josephine, in to the world on January 4th, 2011. We learned at her 20 week ultrasound that she could be facing some heart issues involving her Left Ventricular Outflow Tract (LVOT). After further testing and fetal echocardiograms (echo) she was diagnosed prenatally with Dextro-Transposition of the Great Arteries (D-TGA), Ventricular Septal Defect (VSD) and Pulmonary Valve Stenosis (PS). While all three of these defects are rather common, it is quite rare for them to all be present at one time.

Lily decided to arrive on her own, three weeks before our scheduled C-section delivery date. This complicated things a little since we are in northern Indiana and would need to deliver at IU Hospital which is connected to Riley Children's where she would need immediate treatment. After confirming I was in active labor the local hospital quickly transferred me via Ambulance to IU along with a L&D nurse and Neonatologist "just in case." I made it with no problems and Kraig, Brynlee and Kraig's Dad weren't far behind. After arriving, they delivered Lily rather quickly. Much to our surprise, they did allow us a few minutes to see her before transferring her to Riley to begin her testing and treatment.

Once we were able to visit in the NICU it all sank in. Seeing your child on all those machines, medications, tubes, monitors and wires is not something you are ever prepared for. She looked good overall, quite beautiful if I do say so myself. We learned that she had been put on Prostaglandins via IV. These are used to keep the Patent-Ductus from closing, as it does naturally after birth. This is used in cases like Lily's where the heart is dependent on the ductus to ensure mixing of oxygenated blood in the heart. This is a temporary fix as the Ductus can not stay open forever. This simply holds her off until a treatment plan is made.

At day two, in the NICU, she had a Cardiac Catheterization procedure done and also what is called a Balloon Septostomy. This is where they actually create another defect called and Atrial Septal Defect (ASD) to help the mixing of the blue (un-oxygenated) and red (oxygenated) blood. She did well under full anesthesia and returned to the NICU on a ventilator. She was taken off the vent the next afternoon. She did very well for a couple days working on feedings a weaning off the Prostaglandins. Eventually her PDA (Patent Ductus) started to close and she crashed. Her oxygen was dropping and her respirations were lower than normal. They quickly put her back on PGE's to keep what was left of the PDA open until they could get her into surgery.

She was scheduled for a Right BT Shunt surgery on the 14th. They were able to complete the surgery through her back instead of an open heart surgery, which is through the chest and sternum. Kraig and I went in early that Friday morning and cuddled with her for an hour or so before helping deliver her to the Operating Room. Walking away from her not knowing the outcome was one of the hardest things either one of us had ever done. The surgery went just as expected and she was taken to the PICU (Pediatric ICU) for the next three days.

We were able to have all four of us in the PICU room with her at one time which allowed Brynlee to spend some much needed time with her sister. She wasn't allowed in the NICU due to RSV season. I was fantastic to have all of us together in one room. We actually felt like a family and not like we were torn between our two children who couldn't be in the same room. After her stay in the PICU we were moved back to the NICU to work on the rest of her recovery, feedings and gaining weight. It was great to know we were over the mountain and on our way down. We knew this surgery was just a temporary fix for her. We knew she would eventually grown out of it and "The Big One" would be inevitable. Still the thought of having a few somewhat normal months at home as a family was a great thing to look forward to.

After a short stay in the NICU Lily's Cardiac team offered us a room in the Heart Center where it is much more comfortable and one of us could stay the night with her. She had her own room and the constant noises of the NICU were behind us. In the heart center we worked on feedings and weight gain. We met with Speech Therapy (which in her case is for feeding purposes) and Developmental Pediatrics. Lily was never able to consume nearly enough calories to sustain herself even with fortifying her milk to 27cal. It was decided that we would start NG tube training and go home with it in. This training haunted both of us. Neither one of us wanted to stick a tube down our newborn's throat. The reality was, that she HAD to have it and if we were taking it home we would have to know how to set it ourselves and troubleshoot any problems that might arise. After we both completed our training it was time to head home. WE WERE ECSTATIC!

After returning home, Kraig went directly back to work and my Mom and Dad stayed with us for two weeks to help us get into some sort of routine. This was a godsend. It helped get all the initial check-ups and Dr. appointments out of the way before fending for myself. Lily was thriving and Brynlee loves her little sister! It was great to let everyone meet her for the first time after hearing so much about her. She is such a beauty and to look at her with the NG tube out, you would have no clue there was anything wrong with her. She has gorgeous blue eyes and red hair that we are all hoping sticks around for years to come. We all know a little extra spunk might be needed for this little fighter.

At three months old, Lily's Riley Pediatrician suggested trading out the NG tube for a more permanent piece of hardware, the PEG or G-tube. This would be a line connected directly to her stomach, rather than in the nose. It can be used for longer periods of time and has less adverse effects on oral feedings for the future. She had been showing no signs of being able to sustain herself and knew it would be at least a few months, after her Big surgery, before she would start eating on her own. We jumped at the chance, as the NG was causing lots of issues with reflux, oral aversion, etc. She was scheduled for G-tube placement surgery on May 5th, 2011.

We arrived at Day Surgery first thing in the morning and everything went pretty smoothly. We met with the surgeon, nurses, anesthesiologist etc. They changed her into the smallest little hospital gown you have ever seen and it was time to hand her off to the surgeons once again. While this is a very routine surgery, it reminded us of what was on the horizon and how hard it would be to hand her over on that big day. We waited impatiently for the news and when it came it was positive. She went directly to the heart center at our request. She was in a lot of pain but the surgery had no complications.

We just needed to keep her comfortable

over night and then start feedings through the new G-tube. We did get a battery swing that fit in her crib and she was feeling much better. You never notice just how many tubes and wires are attached until you try to figure out how to put them in and out of a swing. The next day we started doing feeds on our own. She had a few unsuccessful and then gradually started to do better. We met with Cardiology and our favorite Cardiology Fellow (you know who you are.) After much talk about Lily's options (or lack thereof) for full repair of her heart issues. We decided together that we should get things around and send out some referrals to two out-of-state surgeons to see if she was a candidate for the Nikaidoh OHS (Open Heart Surgery.) We were discharged from Riley two days after surgery, on the 7th.

Since G-tube placement Lily has been a rockstar! She is now 7 months old and weighs over 17lbs. Can support her head on her own, roll from her tummy to her back and sit with assistance. She is an absolute joy. She is very much interested in toys and conversations with her big sister. She loves to watch Brynlee jump up and down and run around the house.

Just recently she has been excepted by Dr. Victor Morell at Pittsburgh Children's Hospital for the Nikaidoh OHS. This is not the typical treatment for children with her defects, but there are aspects of her heart anatomy that don't make her a good candidate for the typical treatment called the Rastelli OHS. Her Open Heart Surgery is scheduled for the 11th of August in Pittsburgh. Your thoughts and prayers are greatly appreciated.

-The Borders Family

Our New Blog Site

This is the new blog for our friends and family to follow Lily's Heart Journey. She is 7 months old now and scheduled for her Open Heart Surgery on August the 11th. I will post updates throughout surgery and recovery here. I will continue posting with updates on post op appointments and milestones accomplishments. I will also create an "up to now" post to catch you all up on how she has been doing since birth. We appreciate all of your love and support.

-The Borders Family