Jenn: October 2003 Archives

Today was a day filled with the most wonderful news I have ever heard with Matthew. First let me start off by saying that during his 12:00 feeding today, he took 30 ml's by the bottle!!! (that's half of his feeds) and during his feeding, he only had one episode where he dropped his heart rate but he was able to come back up to normal pretty quickly! Then on top of that, the eye doctor came and examined him today and was extremely surprised at what he saw in his right eye, which is his bad eye. At this point, he expected the retina to be completely detached and curled up in a ball, but it wasn't!! As a matter of fact he said it looked like it was attached in most places, with very little detachment and it was FLAT!!! Flat is a really good thing and that is the way it is suppose to be! Considering how rapidly the Retinopathy of Prematurity (ROP) disease was progressing in that eye, there is no way his retina should still be attached at this point. I am telling you it is nothing but a miracle that his retina looks as good as it does. Praise God!!! There was however, some more blood in his left eye and the doctor didn't like it but he didn't seem to be too concerned for now.

In addition to this, the only way we know as much as we do about the retina is because the doctor was able to really see inside the eye for the first time since the lense had clouded up. Now I don't know if the lense is not as clouded as before or what the deal is, but I was really excited to know that he was able to get a good look into his eye. Unfortunately though, Matthew will still need to have surgery in that eye to remove the lense and to repair the areas where there is detachment. The doctor is currently trying to get time in the operating room before he goes on vacation (which I think is November 11 or 13). If he is able to get O.R. time before he goes then Matthew will stay in the hospital. If he can't get O.R. time before he goes on vacation then Matthew could possibly come home as early as the next few days!! (OH MY GOSH, WE ARE SO NOT READY!!!) I was so shocked when they told me that, that I was struck with absolute excitement and complete fear at the same time. They said that the only thing that is keeping him in the hospital at this point is his eyes and there is nothing they are doing in the hospital that we can't do at home.

At first Matthew was staying because of his eyes and liver issues, but the hide-a-scan results came back normal and they tested his bilirubin levels and they are coming back down. They were talking about doing a liver biopsy (another surgical procedure) but then decided against it and decided to monitor his bilirubin levels for awhile. They are running one more genetic test to see if he is deficient in producing a specific liver enzyme, but we will let you know when we get the results from that.

So at this point he could either be home really soon or stay in the hospital for another week or so, it all depends on whether or not the doctor can get time in the O.R. If he can't do the surgery before he goes on vacation and Matthew can't take his full feeds from a bottle, then he will come home with a feeding tube and we would be the ones to have to put it in him and continue to work with the bottle feedings until he gets it down. Because he drops his heart rate so significantly most of the time during feedings, he will have to come home on a monitor so we can watch him. I am praying so hard that he can take the full feeds from the bottle, because I really don't want to have to deal with trying to put a feeding tube in him and worry about whether or not it is going into his stomach, or if the feeding tube ended up in his lungs...as it is Matthew will be coming home on oxygen and will probably have to be on oxygen for up to a year or so they said.

Anyway, please keep praying for Matthew's feeding progress so he doesn't have to come home on a feeding tube and pray that he doesn't have drops in his heart rate during his feedings. Please also pray for the right timing of the eye surgery. Pray that we can get eveything done before he comes home. (i.e. thoroughly cleaning the house by dusting, steam cleaning carpets and removing anything that could possibly irritate his lungs, disinfecting everything, having Jason finish his dresser that he is building for him, etc) We know your prayers are working, so please keep praying! Thank you all so very very much for everything...we'll continue to keep you updated as soon as we know anything.

Matthew went in for surgery this morning at 7:00 a.m. and things started out well, but didn't finish that way. After he was under anesthesia and intubated, the doctor made an incision in the eye and as soon as he did that Matthew stopped breathing. But if Matthew was on the ventilator, how could he stop breathing, right? We asked the same question and it looks like Matthew had a bronchospasm and a neurological response or a vagal response as soon as the doctor made the incision in the eye. This means that he had a neurological response that made his chest lock up or not move so the ventilator couldn't breathe for him. He had the same reaction to fentanyl (a pain med) that they had given him in the past. At that point, the doctor decided not to go any further with the surgery. This was a good thing too because once they got Matthew breathing again and he went in to close up the incision he made, the exact same thing happened. From what I understand, it was an automatic neurological response (kind of like when the doctor tests your reflexes by hitting your knee with his hand...he hits it just right and your leg moves...you didn't make the leg move consciously, it just happened) They say this is not a good thing, but it can happen in some cases. Fortunately, they told us that his heart remained strong throughout the entire time. So needless to say they are going to try the surgery again in about 7 to 10 days from today. I believe God answered our prayers with the doctor's decision to stop the surgery. We prayed and asked God to give him the wisdom he needed to make the right decisions today and I feel like he did. Imagine if we had a gung-ho doctor that wanted to keep going... Anyway, Matthew was extubated around 1:00 and is back on nasal cannula at a tenth of a liter at 55% oxygen. They stopped his feedings at midnight last night because of the surgery but are going to slowly get him back up to his full feeds again.

Now to catch you up on everything else...before surgery, Matthew was up to 60 ml's of breastmilk every 3 hours. That was beyond his "full feeds" total of 49 ml's every three hours. So far he was tolerating the feedings, pooping on his own and he was testing negative for blood in the stool every time they tested it. Unfortunately, Matthew was not gaining a lot of weight on just the breastmilk alone, so they did start adding more vitamins and fortifiers to the breastmilk to help add extra calories. So far he seems to be tolerating it but of course only time will tell. Let's keep praying that he tolerates the feeds with the fortifiers in it.

I have worked with the occupational therapist several times in trying to get Matthew to take the bottle, but it turns out that he is actually doing better on the breast than he is on the bottle. Yesterday Matthew latched onto my breast and suckled for about 15 minutes. He was getting milk and was swallowing and breathing too. But near the end he was getting tired and then he choked and he dropped his heart rate and his oxygen saturation. When that happens we have to stimulate him by rubbing his back or slapping his back to get him to breathe and bring his heart rate back up. It worked, but as soon as that happened, he vomitted all over me. What a joy it was to be wearing overalls that were open, so when he threw up on me, it went down inside my overalls, all over my legs and on the outside of my shirt!! What fun it was!! (welcome to motherhood, huh?)

I worked with the physical therapist and the infant development specialist yesterday to test Matthew's muscle tone and to work on exercises for him to help build strength. They were very pleased with the results they were getting from him and they both thought he did exceptionally well.

His direct bilirubin levels are starting to go back up again, but now that he is off of the IV nutrition, it could be awhile (even a couple of months) before they come back down to normal. He is still getting medications to help his bilirubin levels come back down to normal limits.

I was able to give him a bath yesterday and he absolutely loved it, so did I!! We had a lot of fun.

Jason and I are doing okay. I was at the hospital yesterday for about 14 hours only to come home, sleep, get up and leave the house by 6:00 a.m. today to do it all over again. I am feeling pretty tired today, but did take a break so I could get things squared away with insurance stuff and other things like that which couldn't be put off. Jason and I rejoiced at the fact that Matthew had his 4 month old birthday yesterday (he should have only been 11 days old) kind of weird to think of it like that. We are getting tired of having him in the hospital and of having to be down at the hospital every day and are anxious to have him home. What a great thanksgiving present it will be to have him home with us, if he is able to be.

Please keep praying for Matthew, for the doctor's and nurses, all the various therapists, and for us. Thank you for the comments on line, cards in the mail and all of your wonderful words of encouragement. We really do appreciate it!

Sorry it has taken awhile to write an entry, but we have just been exhausted these last few days...

Anyway, to get you caught up, the surgery went fairly well as the doctor added 460 more shots of laser and 6 shots of cryotherapy in the left eye. He did not do anything new to the right eye because there was still more bleeding in that eye. The eye doctor examined his eyes today and he is certain that he needs to go back in for more surgery into Matthew's right eye before two weeks is up. He needs to remove the lens in that eye because it did cloud up after he nicked it and now it is almost a full blown cataract. Apparently, if he removes the lens, Matthew will still be able to see out of the eye but not very well. They will replace the lens with a synthetic lens but that could be anywhere from 6 months to 3 years down the road before they do that. The doctor also said that if babies can't see out of an eye, e.g. a clouded lens, then their brain will shut down and never use it so it is better to remove the lens so they will continue to use the eye even if it is not great vision. The doctor also mentioned that with all the surgeries and cryotherapy in the left eye, it is also likely to develop a cataract and the lens may need to be removed from that eye as well. He is also confident that the left eye is 99.9% good, however, during the eye exam today he noticed a blood vessel shaped like a tornado in the vitreous fluid. He doesn't know what it is, but he is going to keep an eye on it.

After the surgery, Matthew stayed intubated for a day or so, then he went onto CPAP. However, today at 11:00 a.m., they took him off of CPAP and put him on nasal cannula and he seemed to be doing fairly well. As of 11:00 p.m., he was still on the cannula.

After the surgery, Matthew was having more bleeding ulcers in his stomach because of the stress he's been under so they started him on zantac in his IV nutrition. They were getting blood and bile on continuous suction for a day or so. On Friday of last week, they tried to start his feeds again at a very small amount, but they were getting a lot of residual with unusual color so they stopped. However, today they started up his feeds again at 3 ml's every 3 hours at 6:00 pm. As of his second feeding at 9:00, he tolerated it really well, no residuals, no bile or unusual color. We were going to try to put him to the breast today while they fed him through the tube to get him used to associating my breast with food. This is called recreational nippling or recreational breastfeeding and this is sometimes successful but most of the times it is not. Preemies usually don't know what to do when they are put to breast because they are so used to having tubes in their mouths that when they are put to the breast, they don't have the instinct to start sucking. I am hoping that with time and a lot of work, I'll be able to breastfeed him. When it was time to feed Matthew today, he was getting really tired, so we didn't put him to the breast, but we did put a drop of breastmilk on his tongue and he seemed to swallow it okay and enjoy it. Then with me holding him, we fed him the rest of the milk through a tube. He was fast asleep shorter after the feeding stopped.

Matthew has had multiple blood transfusions recently and with all the medications he has been on, he started to retain a lot of fluid. So they started him on Lasix to help him urinate out some of the fluid. At one point he was over 6 pounds, but as of last night he was back down and is now weighing 5 pounds 13 ounces which is probably closer to his true weight.

He is still receiving antibiotics for a lung infection and an infection in his bladder but they should stop those sometime this week.

He is still at Stanford and will probably be there for a few more weeks because of the upcoming surgeries.

Please continue to pray for Matthew and us and for all the other babies in the NICU that are undergoing other kinds of surgeries and problems.