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 .

Well unfortunately little Spence had some bad blood gas's last night and was taken off the Vent and put on the Oscillator. His Nurse said that he will hopefully only have to be on the Oscillator for 3 or 4 days. His settings right now are a bit high but his blood gas's are getting better, so they will hopefully be able to lower the settings soon and get him back on the regular Vent. Spence is also having some blood pressure issues as well. Spence is on blood pressure medication to help with his low blood pressure. His low blood pressure according to his Nurse is most likely due to the morphine he is getting. Spence is resting well and will be pretty much out of it for a little while. Due to the surgery Spence is also very swollen but I am told that all of this is normal. I am looking forward to him making a full recovery. Thank you for all the prayers on our behalf.

Spence has made it through surgery and is doing well. He will be zonked out for the next two days due to how painful this surgery is. The Nurse Practitioner Dea said that she likes to keep the babies comfortable after surgery so I shouldn't be surprised if he isn't very active for the next few days. They are thinking they may have to put him on an Oscillator breathing machine. The reason they may need to put him on a larger machine is due to the fact that his intestines are inflamed and are putting pressure on his tiny diaphragm, making it hard for Spence to breath. He is currently on an antibiotic to reduce the risk of infection and morphine to reduce the pain from the surgery. Dea said he will be uncomfortable for a little while. Dea seems to think that Spence wont have to be on the Oscillator for to long, she is predicting it will only be for the next 48 hours or until the inflammation in the intestine is gone. Hopefully he wont have any trouble coming off the Oscillator back onto the Vent. After speaking with Spence's nurse Erin and the Nurse Practitioner (Dea) after he is done with this new course of antibiotics they will hopefully be able to get him on some steroids to have him come off the Vent completely .. I am thankful for your continued prayers on Spence's behalf, he is really going to need them now to help him get through this recovery process. Thank you so much for all of the love ..

Tomorrow morning at 7:30 am Spence will be headed down to surgery. Doctor Glasser has decided that Spence is big enough and stable enough to perform the surgery needed to put Spence's intestine back together. While they are closing his Ostomy they will also be doing Spence's circumcision. We are really happy Doctor Glasser is the one performing the surgery on Spence, he is really nice and he takes his time. I will let you know how our little man does after his surgery..

I spoke with Nurse Cyndi today and she said that he is being a bit of a stinker. He is all over the place on the rate for the Vent, he has been anywhere from 15 on his rate back up to 30. Spence's O2% is in the upper 30's - 40's range. Doctor Lal is becoming rather frustrated with our little Yo-Yo, they are hoping to get him off the Vent soon due to the increased damage to his lungs the longer he stays on it. They are planning to start him on another round of steroids as soon as he is done with his antibiotics, which will be on the 10th. The Doctor's and Nurse's are hopeful that since Spence had such a great response to the Steroids last time, that this round will be just as beneficial. Poor little Spence is a bit swollen with water weight due to the fact that preemies don't do well with extra fluids. They are going to start giving him a diuretic every other day to help get the water weight off. They have also taken an x-ray's of Spence's lungs today and they seem to be a bit cloudy. The cloudiness could be from one of two things, either his lungs are a bit wet or it could be showing the scarring of the lung due to the Vent. This is another reason why they are giving Spence the diuretic. Not only will it help with the water weight, but it will also help dry up the lungs if they are wet. Spence is doing well with his feedings, he is up to 8 cc's. Hopefully soon he will be off the Vent and than they can work on getting him used to eating out of a bottle. Thank you for your continued prayers on our behalf. We truly appreciate each and every one of you.

Today Spence is having a good day, his Vent setting is 30 and his O2 % is in the 40-50% range. The Nurse Practitioner Dea told me yesterday that they are going to have to do another round of Steroids to get little Spence off the Vent. The good thing is Spence did really well the last time on the Steroids so there is no reason to think he wont do well again. Hopefully they will have him off the vent in a week or two, it just depends on him and how well he takes to the Steroids. They have also seen an improvement in his intestine. Spence's little intestines aren't as dilated and he is putting out a tiny amount of stool from his Ostomy. Since his tummy is looking better Doctor Gamble has decided that she would like to challenge him with some feedings to see how he does. They have started his feedings at 2cc's every 3 hours. So far he has had one residual from his feeding last night, but Spence's Doctor and Nurse Cyndi are hopeful that he will do well. It might just take some time for him to get used to eating again, since his little tummy hasn't had to worry about digesting anything for a couple of weeks now. Spence is now weighing in at 3 pounds 14 ounces, the Nurse last night said that he has started to retain some fluid so his weight last night was 4 pounds 2 ounces. They will most likely give him a diuretic treatment to get rid of some of the water weight. Thank you for your prayers on our behalf. We love each and every one of you and are grateful to have you all in our lives.

Well I just spoke with Nurse Nancy and Spence is doing much better on the Vent. His rate is at 20 and his O2% is in the 40's. He is resting much better being on the Vent. They did the Ultrasound on Spence's little boy parts and found that he has a large Hydroseal, which we are hoping will resolve itself by absorbing back into the body. If the Hydroseal doesn't absorb they will have to do minor surgery to repair it. There is still no output in his ostomy, and from the x-ray they took of his little belly this morning his intestines look a little distended. The Nurse's and Doctor's are going to keep a close eye on both issues. Hopefully everything will get better soon. I will try to get some pictures of him tonight when we go...

from mommy

Well I had great news, but it seems that it was short lived... Last night they had Spence off the Vent and back on the Vapotherm, he was on 5 liters and his O2 % was in the 60% range. I spoke with Nurse Nancy this morning and she informed me that he was unable to stay on the Vapotherm, they tried him on the Cpap and he was unsuccessfull with that as well. Nancy said that his O2 % was in the 100's and he was still D-sating. So as of this morning around 9am he was put back on the Vent. Nurse Nancy was also doing his assesment this morning and while she was checking his little boy parts she noticed that his little scrotum was very hard, she called in the Doctor who called in the Surgeon. They looked at it and they seem to think it could be one of two things, either it is a hydroseal, which they can fix when he is a little bit older with surgery, or it could be his intestine (hurnia) (sp?) which they will have to do surgery today to fix. Also his little bowels are making hypoactive (infrequent) sounds and he is still not making any stool. Our little Spence is having a rough spot right now but I know he will get through it all. Thank you so much for your prayers on his behalf. We love all of you !!

His infection is going away with the help of some really good antibiotics. They have his water weight under control and he is looking more like our little Spence. Spence is weighing in at 3 pounds 10 ounces and is almost 15 inches long... Spence's tummy trouble is getting better because he is doing more breathing on his own. His rate is at 15 and his O2 concentration is in the 40% range. Spence's little intestines are still filled with some extra air, so they have a tube down there helping to get rid of it. Spence is also having some trouble putting out stool from his ostomy, Doctor Atkins was in there yesterday with Spence and was manipulating the Stoma (sp?) and was able to get a little bit of stool out. We will just have to wait and see what they decide, but for right now they are just going to keep taking x-rays to keep an eye on it. So far they don't see anything causing a blockage. Thank you for all the prayers on Spence's behalf, we are truly blessed to have so many wonderful people in his corner. We love you all !!! Have a great day..