Spence is 7 pounds 3 ounces and 18 and a half inches long. Spence has been trying really hard to finish his feedings but is having little success. Spence seems to be a very picky eater, he only likes certain people to feed him, and if they aren't feeding him, than he doesn't finish his bottles.
Joseph and I spoke with Doctor Lal on friday and we were informed that they will no longer be able to hold off on Spence's surgeries. Spence has had some vomiting spells and also some issues with his Hernia. It seems as though his Hernia has become more pronounced and not as easily reducible. Doctor Lal has followed Spence since he was born and has never steered us wrong when it comes to what is best for Spence, while we were talking to her we felt good about moving forward with the surgeries. We are still unsure of an exact date but we are thinking it will be sometime this week. (if Doctor Glasser is available) We are happy that we are able to wait a little bit for Doctor Glasser to do the surgery, we feel very comfortable with him, he has been the surgeon on all of Spence's surgeries thus far. Since Spence will be having multiple surgeries in one day he will most likely be out of it for a number of days. Unfortunately with Surgery Spence will have to be put back on the Vent. Hopefully he will tolerate the surgery well and not need to have the Vent in for very long.
The names of the surgeries that Spence will be having are a G-tube, a Nissan, and a hernia repair. While they are doing his hernia repair they are also going to circumcise him. The reason Spence is in need of a G-tube is because due to his Chronic lung disease he is unable to finish his bottles. In order for Spence to come home he needs to be finishing 8 bottles a day. Spence is now up to 3-4 bottles a day with a volume of 61 cc's . Spence was up to 70 cc's but was having issues with vomiting so the Doctor's decided to reduce his volume. With the G-tube it will be easier to up his volume as he grows. Spence will also be able to eat from his bottle at his discretion. Which will also be less stressful for him. This procedure will allow Spence to rest more. We are hoping with this Surgery we will see an improvement in his feedings and lung function.
After the G-tube and the Hernia repair are performed Spence will have a higher risk for a more serious case of Acid Reflux. This is the reason for the Nissan. The Nissan is a surgery that tightens the opening of the stomach making it harder to vomit from Acid Reflux. The reason this is a necessary surgery is because if Spence were to have a serious Vomiting spell due to Acid Reflux and NOT have the Nissan he would be at risk for Aspirating. This is very dangerous. If Spence were to Aspirate, due to his chronic lungs he would be more susceptible for Aspirate pneumonia. This is potentially fatal for him because he does not have enough healthy lung to fight the pneumonia. This is the reason we were told that having the Nissan is necessary. All of this sounds scary but Joseph and I are confident that Spence will do well with these surgeries. We know they are necessary in order for him to come home. We trust Doctor Glasser and Doctor Lal's decisions when it comes to what is best for our dear sweet Spence. Doctor Glasser is a wonderful, very particular, perfectionist surgeon. He takes his time and before he performs any surgery he Prays to our Heavenly Father for guidance. We know that Heavenly Father has sent us this Surgeon and we have faith that all will be well. I am grateful for all of the support and prayers being sent out way. We love you all.

On Friday I went to the Hospital and was able to feed Spence at 5 and at 8. By the Grace of Heavenly Father, Spence was strong enough to take both bottles back to back. Since Spence was able to eat all of his bottle both times they have decided to bump his feeds up to 4 bottles a day. On Saturday he completed all four of his bottles in the 20-25 minute time frame, so on Sunday the Nurse Practicioner decided to bump his feeds up to 5 bottles a day. Unfortunately Spence was unable to completely finish all of his bottles. Spence was so tired from working so hard on Friday and Saturday, that he was only able to completely finish 3 out of his 5 bottles. As for his Hurnia surgery I am unsure as to when that is going to be done, Spence's primary physician is back with him this week, so I am sure that I will know something more by the end of the day. As for the G-tube and the Acid reflux issue, I have been informed that if Spence is unable to finish all of his bottle feedings after he comes off the Vapotherm, that him having the other two surgeries would be the best bet at getting him home sooner. The Docotor's and Nurse's don't like to keep healthy babies in the NICU only for bottle feeding issues. The reasoning behind this is they don't want healthy babies that are a little slow at eating around babies that still have the possibility of getting really sick. I understand this reasoning, because I wouldnt want to chance Spence getting sick either. If Spence does have to have surgery, it will set him back a little. Making his coming home time most likely in mid -late September. On Friday Spence weighed 6 pounds 13 ounces but as of yesterday Spence weighs 6 pounds 10 ounces. Spence has lost some weight due to how hard he has been working to eat this past weekend. Eating and being held is rather stressful for him, and when he stress's he burns calories. His liter flow is now at 2 and his oxygen percentage is between 35% -45%.

Well as of this morning I was informed that Spence is going to need to have surgery to repair an Inguinal (sp?) Hernia. They will be performing this surgery as early as next week. For this surgery he will once again be put back on the Vent. The last time he was put back on the Vent he had some trouble. I was also informed that he isn't making as much progress as the Doctor's would like. He is having issues with Acid Reflux and due to his Chronic Lung issues he is having trouble coming down on his liter and oxygen flow. Yesterday Spence was briefly put on two and a half liters, but was unable to handle it and was put back on to the three liters that he has been on for over two weeks. It is necessary for him to come down on his liters and off the Vapotherm before he will be allowed to come home. Spence also needs to be able to completely finish 8 bottle feedings. So far Spence is also having trouble with this. We are not sure if the reason he is unable to finish his bottles is due to the Chronic lung condition or if it is because of his Acid reflux. I informed the Doctor that has him today that when I feed him he doesn't seem to have any trouble finishing the bottle. Also when I feed him he never spits up. The Doctor wants me to come in today to see if I can get Spence to eat Two bottles back to back, meaning eat one at 5 pm and than to also eat one at 8 pm. If Spence is able to finish these bottles completely and have no Acid Reflux issues we are going to discuss some different options. The Doctor at first was suggesting that we do surgery to tighten the sphincter that controls the Acid reflux, he also suggested that we consider Spence having a gastro-otomy ( sp?). This is a little tube that is inserted directly into Spence's Stomach, that we would feed him through. I am a bit frazzled and have a lot to think about and I am just pretty much lost at this point. I am relying on my Heavenly Father to help me through this like so many times before. I know that all of you are constantly praying for Spence, I am asking all of you at this time to pray just a little bit harder so Spence can have the Strength to make it through these next couple of surgeries. I will keep you updated with the latest news on what has been decided for our little boy. Thank you again for all the Love and Support. It has really truly helped us through these trying times.

Newest Update on Spence

Things with Spence have been pretty much the same. Spence is now up to three bottles a day, and although he isn't finishing them, it is still really good that he is up to three. Spence now weighs 6 pounds 10 ounces and is 18 inches long. He is receiving breathing treatments everyday to help with his breathing. He has been wheezing a little bit so they are giving him pulmacort (sp?) treatments. The Doctor's aren't sure when he will be coming home but I am still hopeful for sometime in September. Once he does come home, the Nurse practitioner told Joseph and I the other day, that he will be put on Home Bound status until the end of April. So Spence will be almost a year old before he is allowed out in public. Little Spence is doing well he is more alert and is starting to find his little voice. He doesn't cry nearly as loud as Addison or Chloe yet, but I think he will be just as loud. Our poor little spence is a lot more tired since he has started eating from the bottle three times a day. The Doctor's and Nurse's say that this is normal. It is a lot of work for someone so small to eat from a bottle, especially when they have respitory issues. So I have decided that it would be best for me not to hold him unless I am feeding him. The Nurse's said that it is a good idea, that way he is resting and building his strength for his next feeding. I am so happy that he is doing so well and it looking so healthy. I am grateful for all the prayers being sent our way. We love you all ...

from mommy

Well when I arrived at the Hospital I was informed that Spence was no longer on the NICU side of the unit, he is now on the Special Care side. Spence is now (as the nurse's call it) on the feed and grow side. Yay Spence!!! Babies don't normally go to this side of the NICU unless they are almost ready to come home. Spence is now up to the eating from a bottle stage of his life, and last night when I fed him, he ate like a champ. He was given 45cc's in a bottle at 8:15pm, the feeding was supposed to last about 20min, Spence finished eating his bottle in fifteen minutes. At first he was like uhh what am I supposed to do with this, but than he got the hang of it and seemed to like it a lot. I even had Spence's Nurse Holly go and find Spence's Primaries Delphine and Shannon so they could see Spence eating from a bottle for the very first time. They were both so happy and proud of their little Spence. Unfortunately when you move down to the Special Care side of the NICU your Primary Nurse's usually don't get to move with you. Spence's Nurse Shannon is going to try to move down there with him, but it all depends on how many NICU Nurse's are available to work on the ICU side of the unit. Spence is looking good and is tolerating everything pretty well. His liter flow is now at a 4 and his oxygen percentage is between 30%-40%. The RT tonight told me that Spence is doing well and will hopefully be able to wean down some more on his liter flow in the next day or two. Spence is only eating from the bottle once a day for now to get him used to it. Before Spence is able to come home he needs to be able to eat from eight bottles a day. He also needs to be doing well with his breathing. We are nearing the final stretch of this long race, but it has been well worth every moment. I am extreemly greatful for the guidance that Heavenly Father has been giving Spence's Nurse's and Doctor's. I am greatful for all of the prayers being said and for the Love that is being sent our way. With Heavenly Father all things are possible, and for me Spence is a prime example of constant Prayer and Faith in our Heavenly Father. I love you all.

from Mommy

I am so excited !!! Dea the Nurse practicioner called me today and told me that she thought Spence is ready to try eating out of a bottle. The best part of this news is that I am going to be able to be the first one to feed him. I am going to the hospital early tonight so that I can feed him his first bottle at 8pm. I am so excited, I hope he does well with it. His liter flow is at 4 liters and his oxygen is anywhere from 25%-30%. This is really good for him. I will have Delphine take some pictures of me feeding him so that I can show everyone.

As of last night Spence is doing well on the Vapotherm. Spence is still on a flow of 5 liters and his Oxygen when I visited him last night was at 40%. As of this Morning his oxygen is anywhere from 35%-40%. I thank Heavenly Father every day for the progress that Spence has made in the last 3 months, it is hard to believe he started out so tiny and is now getting so big. When Nurse Shannon wieghed Spence last night he weighed in at 6 pounds 8 ounces. Shannon seems to think that some of it is water weight, but most of it is him. Without the water weight on him he is probably a little over 6 pounds. I am thankful for everyone that has been praying for him, without all of you and our Heavenly Father, things I think would have been a lot harder to handle. We are greatful for the support.

They took Spence off the Vent today at around two in the afternoon. Nurse Erin said that right now he is doing ok. He is on 5 liters and about 50% oxygen. This is really good for him considering we didn't think he would be coming off the Vent this soon, due to his chronic lung condition. I never really understood the severity of his condition until it was explained to me in more plain terms. Spence's lungs are like a balloon that is really hard to blow up. No matter how hard you try to blow it up it only blows up a little bit. When Spence tries to take a breath it is like trying to blow up that really hard balloon. His lungs don't expand as much as they should, so he can't really get the full breath needed. I hope I am making sense, I have a tendancy to babble, so to make a long story short when Spence tries to breath his lungs don't expand as much as they should because they are stiff like a new balloon that is hard to blow up. Spence is also doing well with his feedings and hopefully sometime in the near future we will be able to try using a bottle to feed him. As of right now we are still unable to hold him, but once his settings are a bit lower and his oxygen comes down a little bit we might be able to start holding him again. They just want to give him a chance to get back into the swing of things. Thanks again for all the prayers, we truly appreciate them.

Spence's Nurse this morning, said that he has come down some on his Vent settings. His rate today is at 30 and his O2 % is at 33 %. Nurse Jenny said that he is pretty much setting his own pace right now, seeing as he had such a rough day yesterday. Nurse Jenny seems to think that once all of the drugs from yesterday's surgery are out of Spence's system it will be easier to wean him off the Vent. Spence is still a little groggy from the surgery but he seems to be comfortable. The Doctor's have already started him back on half feedings yesterday and today they should be able to put him back on the full feedings he was receiving before the surgery. Our little Spence is making it through, it seems that with every trial placed before him he is feeling all of the prayers and just breezes through them. Thank you everyone for all the prayers, they are truly helping Spence fight through these first trials of life.

Spence is out of Surgery and is recovering nicely. The eye surgery itself was the easy part for Spence, it was the being put back on the Vent that really seemed to throw Spence for a loop. Around 5:30 this morning the RT team took spence off the Vapotherm and put him back on the Vent. Unfortunately they had a little trouble getting the Vent tube in, but once they got it Spence started D-sating badly. Our little Spence was fighting the Vent which happens a lot when a baby has been off the Vent for an extended period of time. The RT's kept taking Spence's blood gas's to make sure all was well, unfortunately Spence had a couple of really bad gas's so they had to raise his rate on the Vent rather quickly. He had a few spells where they had to bag him but he recovered nicely, once they suctioned out his lungs and put him on a higher rate he was doing well. Spence is now on a rate of 55 and his O2% is also at 55. Spence's eye's are a little red and puffy but that is to be expected after having laser eye surgery. Doctor Clark the eye specialist seems to think that Spence wont need to have any other surgeries on his eyes, but they are going to keep an eye on him just to be sure. He will be seen by Doctor Clark and Nurse Sharon on friday for a follow up to the surgery. The RT seems to think that Spence will come off the Vent sooner than later. Spence's RT said that his last gas before the surgery was excellent and if it wasn't for the fact that he was about to undergo surgery she would start weaning him off the Vent. All in all he is doing well, hopefully he will come off the Vent soon. Thank you again for all the prayers, we love all of you .

These pictures were taken Monday night by Nurse Delphine

Turns out that Spence's ROP has become worse and is at a stage three. At this point Spence's ROP is very severe and they are going to do Laser eye surgery on Monday morning at 7am.. This surgery won't fix the vision loss that has already occurred but it will hopefully prevent the ROP from progressing any further. About 90% of the time the surgery is a success and the ROP doesn't progress any further, but there are those rare cases when the Surgery doesn't work and they have to go back in and do another surgery later on down the road. Unfortunately if they have to do another surgery down the road the chances of Spence's eyesight being great are slim to none. As of right now the Eye doctor's Nurse Sharon seems to think that even with the surgery Spence will need to have glasses when he is a toddler. In order to do the Eye surgery they will have to put Spence back on the Vent, which is kinda scary seeing as he has had some trouble coming off the Vent before. Spence's Nurse's are hopeful that he might surprise us and come back off the Vent fairly quick. I am hoping and praying that our little Spence is strong enough to come off the Vent sooner than later, but I have also learned that with Preemies you never really know how things are going to go. What I do know is that everything will turn out all right. No matter what he is in the best place he can be with the most loving Nurse's he can possibly have.. I love the NICU Nurse's, they are Awesome .. Especially Spence's Primaries. Thanks again for the love and prayers being sent our way .. We love you all ..

Spence's first YouTube

Uncle Preston made an amazing video of pictures of Spence.

http://www.youtube.com/cdguylhs1