June has improved leaps and bounds this week. We were nervous to post what a great week it has been because once June has three good days in a row a wrench is bound to get thrown in the plans.
On Sunday, June was taken off her ventilator. She had been taking steroids prior to going off the ventilator to decrease her chances of failing and needing to be re-intubated. She also had to pass a minute ventilation test, where the respiratory therapist turned off the ventilator but left it in to see if June could breathe for a minute on her own. They put June on a nasal CPAP which provided a steady stream of air flow to June's lungs. A few days later she was moved to a high flow nasal cannula, and by Thursday she was breathing room air all by herself!
June's feeds have been going very well too. Initially, the milk she was getting was considered a prime because they weren't counting it in her calorie intake since it was so little, but at the beginning of the week they moved her to feeds. As the amount of milk she gets goes up, the amount of TPN she is getting goes down. This is good because we are not meant to survive on IV nutrition, and it had started to take a toll on her liver. If we can get her off TPN soon, she might not develop a liver disease and need medical treatment. She started off with her milk intake being increased by one milliliter every 12 hours. As of today, they are increasing her milk intake every eight hours. If everything goes to plan, she will hit full feeds (22 milliliters an hour, which is calculated by her weight and average intake for her age) by Wednesday.
We met with the cardiologists this week. Previously, I had mentioned June has VSD, which means blood in the left side of her heart (which is normally pumped to the body) can travel to the right side (which is normally pumped to the lungs). The extra blood being pumped into the lung arteries makes the heart and lungs work harder and can lead to the lungs becoming congested. June has what they consider to be a moderate opening between the two chambers. Her hole is at the top of the chambers which makes it less likely to close. At some point, this opening could make it harder for June to breathe and cause her to have trouble feeding and growing at a normal rate. The high pressure in the blood vessels due to excess blood could cause permanent damage to her lung blood vessels.
The tricky part about determining if June needs surgery is that she already struggles with the symptoms they look for to indicate the need for surgery. She struggles with feeds. In fact, she won't be able to feed by mouth for months and may need her G tube to stay in for years to help supplement her body with nutrition she isn't getting because she cannot eat as much. She also has trouble breathing already because of the surgery done around her trachea.
Right now, they think she is getting close to the point where she will not need open heart surgery during infancy. The doctors said that although the hole in her heart is not getting any smaller, the blood flowing from the left to the right side is restricted. They will need to continue to monitor the blood flow and size of her heart chambers by echoes done every so often. June also has a slightly larger heart than normal. We do not know how this will play into her need for surgery, but it sounds like some of the doctors think she will need surgery by age two or three.
We also found out that there is an outpatient heart procedure June will need at some point. It is not as invasive as closing the whole in her heart. June has Patent ductus arteriosus, a heart problem that occurs soon after birth, and more commonly in premies. Before birth, the two major arteries (aorta and pulmonary artery) are connected by a blood vessel (ductus arteriosus), which is essential for fetal blood circulation. After birth (within minutes) the vessel is suppose to close; however, June's did not, so oxygen-rich blood from the aorta is mixing with oxygen-poor blood from the pulmonary artery. This also can put a strain on the heart and increase blood pressure in the lung arteries. If this stays open, it can also lead to heart infection. Right now, it sounds like June will have a catheter-based procedure later down the road.
The neurologist was impressed with how June is doing and felt that she was showing no signs of seizures! In his daily check-ups, he felt that June's reactions were appropriate and her reflexes had improved. She was monitored with an EEG one more time Thursday afternoon, which showed no signs of seizures. They are going to take her off one of her seizure medications. She will most likely go home on the other and be on it for some time.
Now here comes the wrench in June's progress: Every couple days surgery comes to change the sponge on June's wound vac. This sponge is placed over the hole from her previous g tube and incision that split open, and it is helping suck out the infection so those sites can close. On Thursday afternoon, while changing the sponge, surgery noticed that June's third g tube was falling out. The balloon that sits in June's stomach and holds it in place was coming out of the hole in her stomach. Her stomach is just too small right now to hold a g tube in place so they decided to pull the G tube all together. June still has a make-shift J tube snaked into her intestines and allowing her to eat; however, it is not something that she can go home with. They will need to let June's abdomen heal for several weeks before they can decide how they will come up with a way for June to eat.
Most likely, June will have a J tube placed into her intestines once the surgery sites have healed. The doctors think it will be months before June will be able to stomach feed. This means at least one more procedure before June can go home to place a j tube. Then June will have to come back to have a g tube put in in the months to come. We were hoping to have June home by mid-October, but now, it could be November before she comes home.
This week we got to bathe June for the first time (but not the first time she has been bathed). We also got to hold June for the first time since August 26th.
June's feeds have been going very well too. Initially, the milk she was getting was considered a prime because they weren't counting it in her calorie intake since it was so little, but at the beginning of the week they moved her to feeds. As the amount of milk she gets goes up, the amount of TPN she is getting goes down. This is good because we are not meant to survive on IV nutrition, and it had started to take a toll on her liver. If we can get her off TPN soon, she might not develop a liver disease and need medical treatment. She started off with her milk intake being increased by one milliliter every 12 hours. As of today, they are increasing her milk intake every eight hours. If everything goes to plan, she will hit full feeds (22 milliliters an hour, which is calculated by her weight and average intake for her age) by Wednesday.
We met with the cardiologists this week. Previously, I had mentioned June has VSD, which means blood in the left side of her heart (which is normally pumped to the body) can travel to the right side (which is normally pumped to the lungs). The extra blood being pumped into the lung arteries makes the heart and lungs work harder and can lead to the lungs becoming congested. June has what they consider to be a moderate opening between the two chambers. Her hole is at the top of the chambers which makes it less likely to close. At some point, this opening could make it harder for June to breathe and cause her to have trouble feeding and growing at a normal rate. The high pressure in the blood vessels due to excess blood could cause permanent damage to her lung blood vessels.
The tricky part about determining if June needs surgery is that she already struggles with the symptoms they look for to indicate the need for surgery. She struggles with feeds. In fact, she won't be able to feed by mouth for months and may need her G tube to stay in for years to help supplement her body with nutrition she isn't getting because she cannot eat as much. She also has trouble breathing already because of the surgery done around her trachea.
Right now, they think she is getting close to the point where she will not need open heart surgery during infancy. The doctors said that although the hole in her heart is not getting any smaller, the blood flowing from the left to the right side is restricted. They will need to continue to monitor the blood flow and size of her heart chambers by echoes done every so often. June also has a slightly larger heart than normal. We do not know how this will play into her need for surgery, but it sounds like some of the doctors think she will need surgery by age two or three.We also found out that there is an outpatient heart procedure June will need at some point. It is not as invasive as closing the whole in her heart. June has Patent ductus arteriosus, a heart problem that occurs soon after birth, and more commonly in premies. Before birth, the two major arteries (aorta and pulmonary artery) are connected by a blood vessel (ductus arteriosus), which is essential for fetal blood circulation. After birth (within minutes) the vessel is suppose to close; however, June's did not, so oxygen-rich blood from the aorta is mixing with oxygen-poor blood from the pulmonary artery. This also can put a strain on the heart and increase blood pressure in the lung arteries. If this stays open, it can also lead to heart infection. Right now, it sounds like June will have a catheter-based procedure later down the road.
Now here comes the wrench in June's progress: Every couple days surgery comes to change the sponge on June's wound vac. This sponge is placed over the hole from her previous g tube and incision that split open, and it is helping suck out the infection so those sites can close. On Thursday afternoon, while changing the sponge, surgery noticed that June's third g tube was falling out. The balloon that sits in June's stomach and holds it in place was coming out of the hole in her stomach. Her stomach is just too small right now to hold a g tube in place so they decided to pull the G tube all together. June still has a make-shift J tube snaked into her intestines and allowing her to eat; however, it is not something that she can go home with. They will need to let June's abdomen heal for several weeks before they can decide how they will come up with a way for June to eat.
This week we got to bathe June for the first time (but not the first time she has been bathed). We also got to hold June for the first time since August 26th.
Keeping June and your family in my thoughts and prayers!
ReplyDeleteLove, Lila