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 comfortableover 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
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 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 p
ast 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.
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.
