The past few days have been a whirlwind of emotions and I REALLY didn't feel like writing until now. It's a long one.
On Tuesday, we called for our usual update in the morning as soon as we woke up. We asked about the results of Connor's eye test because he was getting it repeated to double check something that they saw on the eye test from Monday. The nurse looked back in his chart and said that he had stage 1, zone 1 ROP. After the initial disappointment, we started thinking positively- it is in the early stages and most babies with stage 1 and 2 grow out of it and don't require any treatment.
Then I went to visit Connor without Mike in the afternoon (because Mike had worn himself out in the morning going to the doctor to follow up on his concussion and have x-rays done). The pediatric ophthalmologist told me at Connor's bedside that she had just completed his eye exam and that he had "stage 3, zone 1" ROP in the left eye and "stage 3 plus disease, zone 1" ROP in the right eye. She also said she needed my consent immediately to order a procedure for him where they would inject his eyes with a medication! So I was shocked and terrified as she explained the possible side effects of hitting the lens and causing cataracts, intraocular bleeding, etc and the outcome of not doing the injections that would most likely lead to blindness. :( It was a lot to take in and I spent the next two hours sobbing on and off at Connor's bedside. Then I had to go home and relay all of the info to Mike. :(
We had been told about micro preemies being at a much higher risk for Retinopathy of Prematurity right after the twins were born. At 16 weeks of pregnancy, the retina at the back of the inside of the eyes begins to develop blood vessels that provide nourishment and oxygen to the eyes. Over time, the network of vessels gradually grows forward, eventually covering the entire surface of the retina. This usually takes the entire 40 weeks of pregnancy to complete. In premature babies, this process is interrupted at birth. ROP happens in premature babies when abnormal blood vessels start developing at the back of the eye. These can lead to bleeding and scarring of the retina, which can then pull on the retina, causing it to become detached from the eye. This can cause poor vision or blindness. ROP is graded by stages and zones. The stage explains the severity of the ROP and is graded from 1 to 5, stage 1 being the best and stage 5 being the worst. The zone is graded from 1 to 3. This explains how far the blood vessels have grown on the retina. Zone 1 is the worst and zone 3 is the best result.
That night, a million thoughts crept in to my mind and had me wondering how much more Connor is going to have to endure in his life. The possibility of Connor becoming blind and never playing sports, watching a movie, or even knowing what his mom and dad looked like scared the crap out of me. Kids are cruel and the thought of him being bullied because of his eyesight (or lack of), breaks my heart. If I could give my own eyes to him right now, I would. Mike and I both had a tough time sleeping that night.
Yesterday, in preparation for his eye injections, he was taken off food for four hours before the procedure. Unfortunately, he had a really rough night and a desaturation episode at 7 am, where his oxygen saturation went down to 30% and he needed intervention to bring it back up. He responded well after that though and all his vitals returned to normal. His nurse thinks that the combined stress of having three eye exams in two days caught up with him and he just got tired. The plan went ahead as scheduled. He was intubated again and given fentanyl for sedation and pain. He was put under general anesthesia. They instilled eye drops that froze his eyes and also gave him a drug to paralyze his eyes and facial muscles to prevent movement during the procedure. He then had the Avastin injected into each eye. He did very well during the procedure but did have an increased heart rate shortly after, suggesting that he was painful, so he got a second dose of fentanyl and his heart rate returned to normal. We visited him last night and he was still sleeping off the fentanyl. He looked so chubby without his too-big clothes on!
We had a family meeting to discuss Connor's situation this afternoon. He had another eye exam this morning and both eyes have improved in the last 24 hours! The left eye is now stage 3, zone 2 and the right eye is still stage 3, zone 1 but no sign of disease was present! The doctor was very optimistic because Connor has already shown improvement and the ophthalmologist doesn't have another exam scheduled until next week. He also told us that he has "never seen a baby leave MacMaster blind in 20 years." We now just have to wait and see how his eyes develop over the next few months. He may need a second dose of Avastin and/or laser therapy and he will most likely need glasses but, so far, we seem to be on the right track.
Connor's lungs continue to grow and improve. Today he was extubated, put back on CPAP and only on 21% oxygen which is what we breathe normally! He is still on the CPAP ventilator with a PEEP (pressure) of 11. The goal is to take him off the CPAP when he can maintain on a PEEP of 4 or 5. They will gradually wean him down about 1 PEEP per week. He will have moderate-severe chronic lung disease because he will still be on CPAP at 36 weeks which is only 2.5 weeks away. However, he should grow out of it by school age because the lungs continually mature and by then his damaged alveoli that he has now will make up a much smaller portion of his lungs. He may need to go home on oxygen for a little while but we have no idea at this point.
Once Connor is off the CPAP, he can start oral feeding. They are predicting that this might be a challenge but we will cross that bridge when we come to it. There is the possibility that he may come home with a nasogastric feeding tube (through his nose) or a gastrostomy tube (directly into his stomach through his skin) because babies hate anything on their face but, again, we won't know until we reach that point what he will need.
Connor's brain scans show nothing of concern. His PDA in his heart is non-restrictive, not compromising blood flow at all, and will most likely close completely over time. As long as retinal scans (special eye exams) are required weekly, he will get to stay at MacMaster and will not be transferred to Joseph Brant as previously discussed because Joseph Brant does not have a retina camera at their hospital. His hernia repair surgery will be done as late as possible, probably in his last week before coming home.
The last topic we discussed in our long meeting was Connor's probable go-home date. His due date is February 22 but the doctor said today that he can't see him going home before 44-48 weeks corrected age. That means he probably won't be coming home with us until the end of March or April. :(
In other news, Connor is now FOUR POUNDS! His feeds are now up to 35ml every three hours for a total of 280ml per day.
All in all, we got some good news today. Only time will tell how he will do in the near and far future but at least he has one! I can't even describe how special this little person is. He smiles CONSTANTLY and is so stoic. He has battled every obstacle like it was nothing and with a smile on his face! He inspires me every day and he truly is my hero. My father-in-law describes him best when he says he would never place a bet against Connor because he would lose every time. The world better watch out for Mr. Connor because he will do amazing things one day!
Tuesday:
Wednesday night, sleeping off the fentanyl:
Today, extubated and back on CPAP:
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