The girl gave it a good try, but she unable to handle oral or nasogastric feeds and she has to gain some weight. There are many pieces to this puzzle and I'll do my best to show how they are all woven together and depend on one another working in order for her to come home.
Lydia is currently receiving feeds through a nasogastric tube that deposits into her intestines so there is nothing in her stomach to throw up since she is refluxing. She is handling these feeds well and still having episodes of refluxing stomach acids. Her laryngomalacia makes this very dangerous because she could aspirate into her trachea and lungs. Healthy babies can handle this but with all that Lydia has been through and her small size, she is breathing very quickly and shallow. Lydia is not gaining weight quickly because she is burning so many calories breathing.
We are left with Option 4, a Gastrostomy Tube and Fundoplication. Lydia will have surgery tomorrow to insert a Gastrostomy Tube through her abdomen to deliver feeds directly to the stomach. It will help her get the calories she needs to grow. The Fundoplication is a procedure in which the upper portion of the stomach is wrapped around the lower part of the esophagus. It will help stop the reflux so that she can keep her feeds down, instead of refluxing and aspirating. While she is under anesthesia, ENT will complete a Bronchoscopy on Lydia's airway, looking at all pieces to ensure there are no issues besides laryngomalacia. It is also at this time ENT will decide if the laryngomalacia is something she can grow out of or if she needs a supraglottoplasty, cutting the aryepiglottic folds to let the supraglottic airway spring open. If the supraglottoplasty is needed, ENT will do it right then and there.
Essentially, we are fixing the reflux issues (that wouldn't be an issue if it weren't for the breathing troubles) because of the breathing issues (that can't be fixed without growing hence the g tube). I apologize for the world's worst sentence! The game plan after surgery is two-fold. If all goes well with the fundo and g tube feedings, she should be feeling better from that procedure and feeding well in a few days to a week. At that time she will need to have her breathing under control and her oxygen saturation levels above 88 for a given length of time.
Then home...we hope. Crossing our fingers and praying that we have no more surprises. The heart surgery was terrifying, intense, monumental, but expected. We had almost three months to prepare ourselves. We had discussed it with many nurses, cardiologists and surgeons. After her chest was closed we only had a few more obstacles and we would move to the cardiac floor and teach Lydia how to feed. It was predictable and by the book. The last week has been emotional, draining and frustrating. We went from hearing that she would move to the cardiac floor Monday afternoon to hearing that she needs a surgery for a g tube all in a 24 hour period. Now we have had to prepare ourselves, do our research, get our questions answered and accept that our baby will not feed orally for an undetermined amount of time all in 3 days. It's been a tough week, but we're looking forward to watching Lydia grow at home, with her family, in her own bed, wearing all her cute outfits.
Lydia is currently receiving feeds through a nasogastric tube that deposits into her intestines so there is nothing in her stomach to throw up since she is refluxing. She is handling these feeds well and still having episodes of refluxing stomach acids. Her laryngomalacia makes this very dangerous because she could aspirate into her trachea and lungs. Healthy babies can handle this but with all that Lydia has been through and her small size, she is breathing very quickly and shallow. Lydia is not gaining weight quickly because she is burning so many calories breathing.
We are left with Option 4, a Gastrostomy Tube and Fundoplication. Lydia will have surgery tomorrow to insert a Gastrostomy Tube through her abdomen to deliver feeds directly to the stomach. It will help her get the calories she needs to grow. The Fundoplication is a procedure in which the upper portion of the stomach is wrapped around the lower part of the esophagus. It will help stop the reflux so that she can keep her feeds down, instead of refluxing and aspirating. While she is under anesthesia, ENT will complete a Bronchoscopy on Lydia's airway, looking at all pieces to ensure there are no issues besides laryngomalacia. It is also at this time ENT will decide if the laryngomalacia is something she can grow out of or if she needs a supraglottoplasty, cutting the aryepiglottic folds to let the supraglottic airway spring open. If the supraglottoplasty is needed, ENT will do it right then and there.
Essentially, we are fixing the reflux issues (that wouldn't be an issue if it weren't for the breathing troubles) because of the breathing issues (that can't be fixed without growing hence the g tube). I apologize for the world's worst sentence! The game plan after surgery is two-fold. If all goes well with the fundo and g tube feedings, she should be feeling better from that procedure and feeding well in a few days to a week. At that time she will need to have her breathing under control and her oxygen saturation levels above 88 for a given length of time.
Then home...we hope. Crossing our fingers and praying that we have no more surprises. The heart surgery was terrifying, intense, monumental, but expected. We had almost three months to prepare ourselves. We had discussed it with many nurses, cardiologists and surgeons. After her chest was closed we only had a few more obstacles and we would move to the cardiac floor and teach Lydia how to feed. It was predictable and by the book. The last week has been emotional, draining and frustrating. We went from hearing that she would move to the cardiac floor Monday afternoon to hearing that she needs a surgery for a g tube all in a 24 hour period. Now we have had to prepare ourselves, do our research, get our questions answered and accept that our baby will not feed orally for an undetermined amount of time all in 3 days. It's been a tough week, but we're looking forward to watching Lydia grow at home, with her family, in her own bed, wearing all her cute outfits.
Prayers and hugs for you guys!
ReplyDeletePraying for sweet Lydia and you and Dan. Always remember that
ReplyDeleteour Dear Lord has her wrapped in His loving and merciful arms.
I hope all went well with Lydia's surgery and that it will help her gain weight and be able to come home soon. Thinking of you x
ReplyDelete