Retinopathy of prematurity (ROP) is a potentially blinding disease affecting the retinas in premature infants. The retinas are the light-sensitive linings of the insides of the eyes. In infants born prematurely, the blood vessels that supply the retinas are not yet completely developed. Although blood vessel growth continues after birth, these vessels may develop in an abnormal, disorganized pattern, known as ROP. In some affected infants, the changes associated with ROP spontaneously subside. However, in others, ROP may lead to bleeding, scarring of the retina, retinal detachment and visual loss. Even in cases in which ROP changes cease or regress spontaneously, affected children may have an increased risk of certain eye (ocular) abnormalities, including nearsightedness, misalignment of the eyes (strabismus), and/or future retinal detachment. The two major risk factors for ROP are a low birth weight and premature delivery.

The reason I included the information on ROP is because this morning I was informed by Spence's Nurse that his eyes are in the early stages of ROP. The Eye Doctor is going to keep an eye on our little Spence and the ROP, hopefully it wont progress any further than stage one. His Nurse said that stage one can usually resolve itself but as it says in the information on ROP it could lead to damage later on in life. I asked his Nurse if him being on the Vent and other breathing machines could have caused the ROP. She said that and extended time on Oxygen can affect the eye's of premature babies, so it is very possible that his being on the Vent so long could have contributed to this Diagnosis. Sometimes ROP can just happen because of prematurity or low birth weight, and poor Spence fits into that catagory. As of right now Spence is doing well with his feedings, he is now up to 9cc's. He still hasn't had a good poopy diaper but he is definitely working on one. They have also done another brain scan and there have not been any changes. Spence still has two small brain bleeds that are at a stage two. The docotor's and Nurse's tell me that stage two isn't really that bad and that babies with stage two can go home with them. Spence will have to be continually monitored once he comes home to make sure that they resolve themselves and not get any worse. Seeing as he has had them for a while now, I don't forsee them getting any worse but we of course will be cautious. Little Spence is growing bigger each and every day, he is so sweet and loves to be held. I am praying that all that he is going through with his eyes,his breathing and stomach issues as well as his brain bleeds will be resolved with the help of Heavenly Father. I know that all things are possible through him, we just have to have Faith in him to know that whatever the outcome, that it is His will. I love each and every one of you and thank you from the bottom of my heart for your continued prayers on our little Spence's behalf. We know he feels them because he is making it through.

Spence is doing well, he seems to enjoy his big boy crib and is adjusting to all the loud noises in the room. Spence has lost some more water weight, so he is now weighing in at 4 pounds 12 ounces. He is now able to wear clothes because he is able to maintain his own body temp. Spence is no longer on the C-pap , he is now on the Vapotherm and doing well. His settings are at 4 liters and 40% oxygen. Spence has also started eating again and is now up to 6cc's of formula. The reason Spence is not getting Mommy Milk is because he was unable to tolerate the fortifier being added to the milk. The Formula he is on now is already pre-digested, it is called Pregestimil Lipil, it is much easier on his sensitive little tummy. He is doing well on it and has had hardly any residual from it. Unfortunately Spence is having a hard time making a poopy diaper, which is making him irritable not to mention uncomfortable. The Nurse's were giving him a suppository at one point, but chose to stop due to the irritation it was causing. I am hoping and praying that he is able to pass something soon so he is able to have some relief. I have also found out that our little Spence has an inguinal (sp?) hurnia that will have to be fixed before he comes home. Spence's Nurse's have been telling me a little bit about what to expect for when Spence does come home. I never really realized how different life with a preemie would be. When Spence comes home he might come home on oxygen which is not uncommon for preemies, he will most likely be on monitors as well. Seeing as he will most likely be coming home in early to mid September, the Doctor's might decide to have him be home bound. Home bound basically means no one comes in and we don't go out, unless Spence has a Doctor's appointment. The reason they may decide to put Spence on Home bound is because he will be coming home right at the start of RSV season, which for preemies is a dangerous time of year. According to Spence's Nurse a tiny sniffle which is nothing for us can lead to a major cold for him that would put him back in the hospital. It all sounds scary but I know that Spence will make it through. We appreciate all of the prayers and know that Heavenly Father hears each and every one. We love all of you. Thank you for the constant support and prayers on our behalf.

Aunt Kika gets to meet Spence

FINALLY some pictures of our Little Spence

Update from this morning

I called the hospital this morning and his Nurse said that he is doing excellent. Spence is doing well with his feedings, he is at 3cc's of formula every 3 hours. The Doctor's have decided not to feed him Mommy milk at this time because the last time he had it he was having frequent residuals and not tolerating the fortifier being added to the milk. So far with this type of formula (Pregestine Lipil) he is doing well. This formula is already pre-digested so it is easier on his little tummy. Spence is still eating from a feeding tube but will be eating from a bottle sometime in the future. Spence weighs about 5 pounds 1 ounce and is now wearing clothes. He is such a big boy now, he is sleeping in a big boy crib and maintaining his own body temp. I asked the Nurse last night if she had any idea of when he might be coming home, she told me that usually the babies go home around their due dates, which for Spence would be August 23rd. Although I wish that this date was a definate, I have come to realize that I have to remember the preemie rule, 5 steps forward and 2 steps back. Anything can happen from now until than so I figure we should just play it by ear and take it one day at a time. Once Spence comes home the Doctor's have told us that the best way to keep him healthy would be to have at least 1-2 months where he can become adjusted to living outside of the NICU. Unfortunately being at home Spence is more likely to get sick due to the germs being carried by others. The start of RSV season is in October so we will have to be really careful with Spence because preemie babies are more suseptible to getting RSV due to the immaturity of their lungs. We love each and every one of you and are greatful for the continued prayers on our behalf.

Pictures of Mommy and Spence from last night, July 20th

Spence is doing very well, his nurse last night said she wouldn't be surprised if he was off the Vent in the next couple of days. Spence's settings are 25 for his rate and 38 for his O2%. Spence is also breathing over the Vent a little bit, so he is trying to do it on his own, which is really good. He is still a bit swollen but I am told that some of it could be from the steroids they are giving him, and some could still be from surgery. Spence's incision is healing well, and looks great. The Nurse's have started giving Spence a suppository to help him go potty, so far he has had a couple little movements, which means his intestines are working. Yay !! The Nurse's and Doctor's are thinking that once they start feeding him again his movements will improve and become larger. Last night Spence had his eye's open for the first time in days, it was so cute. Spence is losing some weight but I am told that most of the weight he is losing is water weight. Spence's current weight is 5 pounds 10 ounces. I asked his Nurse last night how much she thought he would weigh after losing all of the water weight, she seems to think that he will still be around 5 pounds. He has come a long way from 1 pound 4.5 ounces. Thank you for all of the support. I still have some new pictures I need to have downloaded, but I promise they are coming :o) .. I hope everyone has a great day ..

Good news, Spence has started his second round of Steroid treatments last night. This will hopefully give him the boost needed to get off the Oscillator and eventually off the conventional Vent as well. From what his Nurse said they are hoping that this will be the last time Spence will need to have any kind of Vent. Hopefully once this round of Steroids is finished he will be stable enough to put back on the Vapotherm and stay on it. His little tummy is looking good, the incision is healing well. I took some pictures of him last night, just to warn you he looks a little swollen. I also took some pictures of his boo boo so everyone can see how good it looks. The last time we checked on his weight he was weighing in at 4 pounds 10 ounces. I know some of you have asked what it will take before he can come home, so here are the determining factors. Spence will need to be able to eat from a bottle, control his body temp, hold his own body weight and also go to the bathroom regularly, seeing as he had an Ostomy this is important. Right now he is not eating, and they are still using the temp sticker in his isolate to control his body temp. Once he is able to start eating again they will be using a feeding tube to feed him. We are thinking that Spence will be in the NICU at least two more months, so we are thinking he might be home late September sometime. The Doctor's don't like to give an exact date because things can always change. We are hoping Spence will surprise us and come home earlier than September, but there is no rush. Thank you again for all of the Love and Prayers being sent our way. We are truly grateful for each and every one of you .