Spence and Addison are both really sick. Addison and Spence have really bad congestion and caughs. Unfortunately they have both been vomting as well. Although both Spence and Addison seem to have the same thing it is way worse for our little Spence. The Doctor put Spence on Zithromax today to hopefully knock out the infection that has attacked his little lungs, if this doesn't get rid of it we are going to have to consider hospitalizing him until he is well again. This thought scares me but I know that whatever comes our way we will be able to handle it. I am hoping and praying that the Zithromax will do the trick and Spence will soon be well. Little Addison is doing a little bit better but she can't seem to shake this yucky caugh and congestion, right now the Doctor hasn't prescribed any antibiotic for her but is she continues to get worse or starts to wheeze we will have to bring her back in to the office. Chloe is a trooper although she has a caugh she is a big help, most of the time she is asking if there is some way she can help, at other times she wants to be babied like Addison and Spence.. I am appreciative of all the prayers being said on our little ones behalf. I will try to keep you updated on how they are doing.. Hopefully the next entry will be telling you of how they are all doing well ..

Well Spence is doing great he is now 12 pounds 5 ounces and 22 and a half inches long. He is getting so big it is almost hard to believe he was only born at 1 pound 4.5 ounces. He is smiling now and laughing a lot. Addison and Chloe can't seem to get enough of him. Spence has a PT and an EI (physical therapist and early interventionist) that come once a week to work with him. Spence is getting really good at turning his head from side to side. He was having some trouble when he first started but now he is able to turn his head like a champ. Spence also had some trouble lifting up off the ground and holding his head up but now he is also doing better with that. Things here have quieted down some but things seem to get crazy in the blink of an eye. Spence seems to be thriving here at home and I couldn't be more happy to have all of my kids home with me. Love you lots .. Oh and I will hopefully have some pictures to put on here soon, our camera has been broken, but now that it is working I should be sending some pictures soon ..

New update

I am so sorry that it is taking me so long to keep everyone updated on our little Spence, time just seems to fly around here. Everyone is really good, the girls are in love with Spence and have already started to spoil him rotten. Every time Spence gets upset or even looks like he is going to cry Addison comes and tells me that Spence is sad and wants mommy, I just have to smile because she is too cute. Chloe loves to hold him and just love on him, at least for five or ten minutes anyway, she usually gets bored after a little while and wants to give him back. She is always talking to him and telling him how much she loves him and how cute he is, and of course Addison wants to do everything the same as sissy, so as soon as Chloe steps away Addison is over there telling him again. Spence is now 10 pounds 9 ounces and 22 inches long. We went to the GI last week and they have decided to put Spence on Soy Formula for now, they are unsure if he has a milk issue. So far he is doing well on the Soy formula. On Friday of last week Spence had an ultrasound of his Gallbladder done to see if the Gall-stone has decreased in size, or if had completely dissolved. Unfortunately the gallstone was still there, I am unsure if it has decreased in size because due to Dr. Amarnath's policy the results will not be given until Spence's follow up appointment which is on the 13th of November. I am sure that if something came up that was concerning he would have called me, so I am sure everything is ok, when I know more I will definitely update everyone. Last week we also went to the Pulmonologist and Spence is now on 1/32 liter of oxygen, which is pretty much like breathing room air. He is allowed to be off of the Oxygen during the day as long as someone is watching him, at night he must wear it so that we are sure he is doing well. On Monday of this week we went to the Cardiologist and were informed that Spence at some point had a hole in his heart and also a heart murmer, but all is well, after they did an ultrasound of his heart everything appeared normal and we wont need to see the cardiologist again.

LONG awaited pics of Spence

from Mommy

Everything at home is great, a little loud at times but very enjoyable. Spence is doing well, he has acclamated himself to our home and is really thriving. Spence now weighs 9 pounds 1.5 ounces and is 20 inces long. He is eating his bottles well and is on 1/16th of a liter for his oxygen. The girls are absolutely in love with him and are always looking at him to make sure he is still here and ok.

Hello, everyone!

Good news! After almost 5 long months, Baby Spence was released from the hospital yesterday. He came home on an apnea monitor and oxygen but Joseph and Kimberly are glad to have him home in spite of that!

Thanks for all your prayers and support during this time. Even though he is out of the hospital he still has a long way to go so if you would continue to pray for him to stay healthy through this virulent flu season, it would be very much appreciated. Because of the time he had to spend on the ventilator, his lungs are weak and a case of the flu, or any respiratory infection for that matter, would be very dangerous for him. He is a sweet little boy and is doing well at this point! Thanks again for praying for him (and us!)

Love,
JoEllen

Spence is doing really well. He is now 8 pounds 2.3 ounces and 19 inches long. He is getting so big but is still so small looking to me. Spence is no longer on the Vapotherm and no longer has his NG tube for feeding. Spence is doing his best to eat his 8 bottles a day, he is finishing them but sometimes he is really tired after eating them. He is up to 72 cc's every three hours. Spence is eating from a haberman nipple that is meant for Special feeding issues. Spence has a very narrow pallet due to him having the Vent in for so long. He is expected to be home sometime by the end of this month or early October, it just depends on him and how much progress he makes. The Doctor's are hopeful that Spence will be able to come off the wall oxygen all together before he comes home. I am so excited that the time for him to be home with us is fast approaching. We are busy getting the house together, we are getting rid of a lot of junk that we don't use or need so we don't have to much junk collecting dust. I am going to have Joseph download some pictures of Spence so everyone can see how much he has changed.

Today has been long but very good. Spence went in for surgery today at 7:30 with Dr. Glasser. Spence did well being put on the vent and he came right off of it after surgery. I am so happy that he only had to be intibated for the surgery and not afterwards. He is doing well, they did a bilateral hernia repair because both sides were herniated. They also did his circumcision and he is looking great. When they brought him up from surgery he was crying loudly because he was mad that he wasn't able to eat yet. I know that once he is able to eat again that he will be very happy and on the road to coming home. I am glad the surgery is over and done with. I know that Heavenly Father has given Spence the strength and stamina needed to accomplish what is needed for him to come home .. Thank you so much for all the prayers. Love you !!!

We are preparing for Spence to come home hopefully sometime by the end of this month or the beginning of October. Right now it just depends on Spence and how fast he recovers from his Hernia surgery. Once Spence is recovered from surgery he will hopefully take off with is feedings and be able to drink 8 full bottles. Spence will also have to come off of the Vapotherm before he comes home, but I know he can do it. With Heavenly Father's help he will be home in no time. They have changed Spence's standard flow nipple over to a Special Nipple usually reserved for children with Special eating needs such as a cleft pallet. He is doing awesome with it, usually when Spence was eating with a normal standard flow nipple he would take about 25-30 minutes eating his bottle, he would also end up very tired from eating. With this new Nipple he is finishing the bottles, most of the time under 20 minutes, he seems less tired and more alert once he is done eating. Spence's Hernia surgery was scheduled for today at 11:15 am but Dr. Glasser had an emergency surgery come in that needed Spence's slot, so we have been moved to Friday at 7:30 am. I am hoping and praying that this will be his last surgery and that he will be able to come off the Vent quickly. I know that last time he was really agitated while having it in so hopefully it will motivate him to have it come out sooner. I appreciate all of your prayers for tomorrow's procedure. I know that he will be ok if I just leave it in our Heavenly Father's hands. Thank you again for all the love .. I will keep everyone posted on his progress after the surgery.

Things here have been busy, we are trying to get the house in order for when Spence comes home. Who knew we had so much junk. Anyway I just wanted to let you know that Spence is doing ok, he is up to 6 bottles a day and is back on 2 liters for his vapotherm. The Doctors want Spence to concentrate more on feeding right now and once he gets that down then they will move on to going down on his liter flow. He has been a little irritable lately but most of that is due to the extra gas he has in his tummy. Spence is stingy with his burbs, so all of his gas stays in his tummy making him uncomfortable. Hopefully he will learn that burping is not an option but a baby rule.

Spence is now on 1 and a half liters on his Vapotherm, he only has one half of a liter to go before he is completely off the Vapotherm and onto the wall oxygen. Spence has also been bumped up to five bottles a day. I am really happy for Spence, because the requirements for him to come home will soon be met. Just to reiterate Spence needs to be able to completely finish 8 bottles a day and be on the wall oxygen before he can come home. So since Spence has now been bumped up on his feedings and taken lower on his liters he is so much closer to coming home than ever before. The really amazing thing is about this news is today Chloe said a prayer for Spence, she prayed that he would have the strength to be able to come home soon. It is amazing the power of Prayer. Heavenly Father hears every single one of our prayers, even when we think they are silly, Heavenly Father hears them. I know that Heavenly Father has heard Chloe's prayer to give Spence strength, I know he has heard all of your prayers and has helped Spence get through this time. We just need to keep praying and I am sure he will be home before we know it. Thank you all from the bottom of my heart, we truly appreciate all of you. I know that Spence's progress is possible because of the Grace of our Heavenly Father. Oh and if Spence continues on this route he might not need to have the G-tube and Nissan surgeries. He will still have to have the Hernia surgery but that is really not a big surgery and a lot of preemie babies have this type of surgery before they come home. I know that with our constant prayers and faith in our Heavenly Father that all will work out the way it is meant to be. Thank you again for everything. We love you all !!!

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

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..

As of Sunday Spence has been diagnosed as Septic, which means he has an infection in his blood. He has been fighting really hard and so far we have had some progress where the infection is concerned. Since he was diagnosed as being septic, protocall dictates that he needed to be tested for meningitis. The way they test for that is by doing a Spinal Tap. They did the Spinal tap on Spence monday. The fluid from the Spinal Tap was clear, so it looks like he will be clear of meningitis but they still wanted to send the culture off to make sure all was well. Since Spence has been fighting the infection he is back on the Vent and doing well, his numbers are good. The rate Spence is on is 38 and the O2 Concentration is in the upper 50's-60%. The reason his O2 concentration is so high is due to his little intestines being dilated and full of air. The Nurse last night said that this might just be a side effect of the infection, but it could also be due to another blockage. Today I was informed that they will need to put in a central line because Spence's little veins are to weak to handle any more IV's. The Broviac line will be put in by Dr. Glasser (i think) sometime today or tonight. This will be good because the central lines can stay in longer and it will keep Spence from having to be poked, they will also be able to give him more nutrition through the central line. As of right now Spence is not being fed due to residuals, they are thinking that Spence is having residuals due to the excess air in his little tummy. So for now it is IV fluids and fat in a tube for Spence. He is now weighing in at 3 pounds 4 ounces he is looking nice and pink. The date for him to come home will most likely be moved to some time in September due to this little set back, but we will know more later on in the month of July. Thank you for praying for Spence and our family, we are greatfull to have the support.

As of today Spence has retained some more water weight, so his little body is a bit bloated. Doctor Watson called us and informed us that Spence was having a hard time breathing due to the extra water on his lungs. After going up on his rate Spence was forgetting to breath on his own. They had to put him back on the Ventilator this afternoon around 5pm. Hopefully once they give him something to get rid of the extra water weight ,they will be able to put him back on the Vapotherm ( the machine used when he is breathing on his own).

Today Joseph and I spoke with the Doctor and it looks as if there are no signs of infection right now. They are growing some cultures and the results will take a couple of days. Spence has gained a little weight, he is now 2 pounds 10 ounces. Nurse Angie said that Spence is now on 3.5 liters of oxygen and his O2 concentration is between 60 and 70%. The reason they had to go up on his oxygen is because there is some water on his lungs, which is making it difficult to breath. This is due to Spence retaining some fluid. Doctor Rahl said that babies this small are sensitive to fluids, this is most likely the cause for the added fluid on his lungs. As a precaution Dr. Rahl has decided to stop Spence's feedings for three days so that he can try and bring his sodium levels back up to where they need to be. The reason that the sodium levels are so important is that when they get to low, the lack of sodium can lead to seizures. As Doctor Rahl told me today Spence is doing well and is not as sick as everything sounds. It is just that everything has a reaction to something else. Once the Sodium levels are back to where they need to be they can than address the other issues (such as the water on Spence's lungs). We are extreemly appreciative of all the prayers and love being sent our way. Please keep praying for our little man, he is fighting hard and I know that the prayers on his behalf are giving him the strength he needs to get through this. Heavenly Father is amazing, and I know that with him anything and everything is possible. Thank you again for all the love...

Update from Mommy

I just wanted to give you a quick update on our little Spence... Today Spence's Dr called me and informed me that his electrolytes and sodium levels were a bit low. The Doctor is a bit concerned due to the fact that all the normal factors for this type of result dont apply in Spence's case. The normal factors would be to much IV fluid, or an excess in urine or stool output. Spence wasn't on any IV fluids and his urine and stool output have been normal, so Spence has the doctor a bit stumped. They are running some tests, which include a blood test and also a urine test to see if they can find the cause for such an abnormality in Spence's case. They have put him back on IV fluids to try and bring up his sodium and electrolyte levels. His respitory progress is still good, he is on 3 liters of oxygen and his O2 concentration is in the mid 30's -40's, which for Spence is good. He isn't gaining weight like they would like him to be so they have spoken with the nutritionist to see if we can boost his weight gain. Spence at this moment in time weighs in at 2 pounds 8 ounces. Thank you for all of your continued support we really appreciate it.. Love you all !!!

Update from Tuesday

I have the best news ever to share with you today... Spence is off the ventilator and breathing on his own with the assistance of the vasotherm. I was able to hold him yesterday and he was at a rate of 15 and his O2 concentration was in the low 30's. While I was holding him he was doing really well and loving it so much that he was high sating the entire time. When I was done holding Spence, his Nurse informed me that they were going to try and take him off of the ventilator and put him on the CPAP. I was a little nervouse but was optimistic about it. When Joseph and I went up there to visit him last night, we were informed that he wasn't on the CPAP like we originally thought but that he was actually breathing on his own, and only had the nasal canular in to help him breath a bit easier. Thank you all for your prayers they are helping immensly... We are so blessed to have all of you in our lives, we really appreciate all of the love and prayers being sent our way. I do have a special request, Last night as we were walking up to the NICU Joseph and I came across a family that was really upset about some news they recieved about their baby. This little angel is presently in the same room as Spence and the scene that we saw was upsetting. Many Doctors and Nurse's doing their best to help this little angel. I am asking for prayers on behalf of this family. I am unsure of their trial, but I know that having prayers sent their way will help. I don't know their names but I know what the power of prayer has done for me. It has helped me through one of the most difficult times in my life. I am hoping that through prayer we can ease their pain a little. Thank you so much for always being their for our family. We love each and every one of you !!

Guess what ... I was able to hold Spence today !!! This week they tried to put Spence on a CPAP machine since his settings were at 10 and his O2 saturation was at 25%. He did ok for the first few minutes but as Nurse Cyndi said he was just to tiny to fly (for it to work). After the first few minutes he got tired and within 45 minutes he was put back on the Ventalator. Since than he has been doing well, his Nurse on Friday (Nurse Erin) said that if he did well on Friday and Saturday that on Sunday I would be able to hold him. My little angel was very good both days and so we were able to take him out of his little baby cage ( as Chloe calls it ) and see how he would tolerate me holding him. As soon as he was settled on my Chest he was doing well. He was High Satting in the upper 90's the whole time, which Nurse Erin said meant he was enjoying himself and really liking it. So now if Spence is having a good couple of days in a row, I will be able to hold him once a day (when his primary Nurse's are there ). He is 2 pounds 12 oz and is eating 5cc's every hour. Our little man is doing well and getting bigger. We have some new pictures of him that we took today that Joseph will put on the computer sometime later this evening... I Love you all ..

Update from Kimberly

Here is the latest update on our little man.. When Joseph and I went up there tonight we noticed that he is back under the light therapy, and the nurse said that his billi levels were just a bit high but it is normal for preemies to go back and forth with the light therapy. His rate on the ventilator has come down he is now on a setting of 30 and his O2 concentration was at 60%, which for him is a lot better than what it was at. Spence is really swollen on his right side. The nurse said that since he does so much better on his right side all of the extra fluid collects on that side making him look distorted, but that with them moving him from side to side it should even itself out. He is now 2lbs 11oz and is eating 3cc's an hour. I am so greatful for so many wonderful people watching over and caring for our little Spence. Thanks for all of the love and prayers being sent our way.... We love all of you !!!

Update from Monday

Spence is now weighing in at 2 pounds 4 ounces and is eating 2 and a 1/2 cc's an hour, almost triple what he was eating. Today they did an eye exam on him and said that as of right now his eyes are to immature to see anything substantial but that they will check his eyes every two weeks for any signs of defects. Spence has been having a tough time coming off the ventilator , he has started to retain water and his little body is swollen to the point that he doesn't really look like himself. The doctor's started him on steroid treatments today that will last for up to two weeks, this treatment should help him lose some of the water weight and hopefully get him over this hump. Hopefully after the steroid treatments he will be able to come down on his rate and o2 concentration, and if possible come off the vent all together. We just have to wait and see. He was off of the blood pressure medication for a while but due to his sodium being low his blood pressure is not as good as the Nurse's and Doctor's would like it to be so he is back on a Dopamine drip until it is back to where they would like it. He is also having some trouble with his thyroid so he is also on some hormone therapy for that. He is definately a fighter so this little hump will pass , I just know it. Thank you again to everyone following Spence's progress , we truely appreciate all of the prayers and well wishes on our little Spence's behalf. We know he is feeling the love due to his progress. We as a family are truley thankful for so many wonderful people in our lives.. Thank you again for everything. (pictures to follow )

Update from Thursday

Thank you Mary Beth for all that you do.. I am sorry it has taken me so long to update you on little Spence , but as of today he is doing well. He is now a hefty 2 lbs 1 ounce and loving his feedings. As of yesterday they started feeding him 1cc every 3hrs and since Spence is tolerating his feedings so well, they are moving him up to 2cc's every 3 hours. The doctor hopes that by next week he will be eating 3cc's and doing well. The Doctor told me today that Spence is doing well with everything so far, although he still has concerns about his breathing. Today or tomorrow Spence will be seen by a genetic specialist to rule out the possiblity of Cystic Fibrosis. The reason that they are having Spence seen is because the Doctor wants to start a steroid treatment on Spence as early as monday to try and help him come off the ventilator. They don't want to start a steroid treatment if it isn't going to help, hence the testing for Cystic Fibrosis. Mom did some research on the computer about Cystic Fibrosis and learned that it is a genetic condition and that normally you can't just get it. So my fears have been put to rest on the scary nature of Cystic Fibrosis since neither side of our family has ever had Cystic Fibrosis.. Other than that he is doing well, he is opening his eyes more and a little more jittery than normal. The Doctors have stopped antibiotics for now because all their tests came back saying that he didn't have any infections. Thank you all for the prayers, we really appreciate each and every one of you.

Daddy Update

Spence is doing well. His glucose is up and they are doing a blood culture to find infection. Since they are growing things in a petri dish it will take about five days before we have any results. He is at his maximum on the ventilator, if his Blood Gases continue to drop they will need to put him on a different type of ventilator. They will start him on Steroid treaments for his lungs if he does not make any progress in weening off the ventilator by the end of this week. Even though he is not doing as well as we would like this has been an amazing experience. We know that all will be well.

Kimberly and I cannot verbalize the gratitude that we feel toward our Heavenly Father and all of you. Thanks for all the comments and all the prayers. Those that do not feel inclined to make comments we appreciate your interest and concern for our little Spence. I have come to realize through this time that we do not always have a choice when or how we will suffer through some trial, but we do have a choice if we suffer alone. We have not had to do it alone.

"...the Lord will at times strip away from us our "comfort blankets" and expose our weaknesses and inadequacies so as to "force us to our knees." I am convinced that each of us--If we are faithful and earnestly strive to be true disciples--will be "forced to our knees" at some times in our lives--perhaps many times." Brent L Top

Pictures taken by Spence's nurse

update from mommy

I just wanted to give you an update on little Spence. They started feeding him yesterday at 5pm and he seemed to tolerate the feeding well. At this moment in time they are only giving him trophic feeds to get his belly primed for the bigger feedings to come. He at this moment is only getting a 1/2 cc every 3 hours. Just to give everyone an idea of how small of a feeding he is getting, 5cc's equals 1 teaspoon and he is only getting 1/2 cc. I went up to the hospital this morning and was told that he is doing well by one of his Doctor's. The only thing the Doctor is concerned about is his struggle to come off the ventilator. Today they are going to start something called a diuretic which will help dry his lungs out and possible help him breath a little easier on his own. The reason they are going to do this is because his Doctor thinks that Spence might have some fluid on the lungs and the diuretic should help with that. The Doctor is also concerned about a possible infection in his lungs which with the proper antibiotics should help our little Spence breath a bit easier. To determine if Spence has an infection his Nurse Erin is going to send down samples of the fluid from his lungs to see if there is infection. I have some great news about little Spence's brain bleeds, As of yesterday the Nurse Practicioner said that the two little bleeds that they looked at last time seem to be getting smaller and are absorbing back into his little body. They also looked at the ventricles and they appear to be normal. Thank you for all the prayers on our little Spence's behalf, we know he must feel them because he is coming through his trials like a champ. On a cute note one of Spence's night nurse's named Delphine is an awesome photographer. She captured the most beautiful picture of our little Spence. I am going to have Joseph scan it into the computer so all of you can view her awesome picture of Spence. A Big Thank You to Delphine for Capturing such an adorable image. We love you all and are greatful for all the many prayers. I hope everyone is having a great day and I will try to have some new pictures on here soon ..

the Doctor did another scan of Spence's tiny head early this am and said that the results that came back are wonderful. The bleeds are still there but they seem to be shrinking in size and there are no new bleeds. Yippie !!!

He is also doing good with the Jaundice, he will hopefully stay off his light therepy but if his billirubin number goes up they will have to put it back on, but for now he is doing well.

They are going to try feeding him this afternoon, so we will know tonight how he tolerates feeds. He is now one pound twelve ounces and doing well. He is still on the ventilator but they are weening him little by little everyday so hopefully soon he will be off the ventilator.

From Mommy:

On Saturday Mom and Dad came with Joseph and I to the hospital. They were able to see Spence for the first time and just adore him. While Mom and I were up there, the nurse said he had gained some weight. He is now at 1 pound 11 ounces, and that is without being fed milk, so he is doing good packing on some weight :) Unfortunately Mom and Dad were unable to touch him this time because the Doctors and Nurses prefer that the touching be limited. Even Joseph and I have to limit our touching, the nurses say it wont always be this way but because he is so small and doing so well they don't want to chance anything. One of the nurses, to ensure that others wouldn't touch him put a little sign on his incubator it reads " Please Dont Touch Me ! My immune system if very week. One day I will be big and strong! Thank You Spencer". I thought it was funny that she signed it Spencer , she said it sounded more athoritative so she used it instead of Spence. It warms my heart that the Nurses love our little boy so much. I am greatful that Spence is in a safe place, where people love him. While we were in there Spence opened his eyes, it is amazing how one little look can just melt your heart. Luckily I was able to snap a picture when he did it. (picture coming soon) Other than that everything is pretty much the same as friday. I am so greatful that he is doing so well.

Friday update from Mommy

Spence is doing well, his billirubin light unfortunately had to be put back on on Wednesday but today when I went to see him they had it off of him again, so that is good. The nurse said that his number for the jaundice was at a 2.8 so it was low enough to have him be without his light therapy. If for any reason it should move above a 3 they are going to put his light therapy back on. He is stooling on his own in his colostomy bag and the leftover stool that was in the bottom half of his intestine is working its way out into his diaper, which the nurse's say is good because it means that the nerves in his lower intestine were not damaged in surgery. His night nurse said that he is very active and shows no signs of discomfort, they are actually weening him off of his ventalator hoping that in the next few weeks he wont need it at all. Another good thing is that the Doctors seem to think that since he is doing so well that they will be able to try feeding him some mommy milk sometime next week. The Doctor came around while I was visiting and said that even though Spence has two tiny brain bleeds, she feels that they will correct themselves and have no permanent or lasting effects. They will still do another scan of his tiny head to be sure. He will be 2 weeks old on Sunday and things are going great for him. Heavenly Father is truly amazing and I know that he is with us always. Little Spence is wrapped securely in Heavenly Fathers arms and I know he is going to be alright. I want to thank everyone again for the prayers, we are definately feeling them. Chloe said to me today that she feels Heavenly Father in her heart and is thankful for prayers. This experience although it has been difficult has really shown me that we are all connected and that no matter what Heavenly Father is always there for us.

Update from Mommy

Joseph and I went up there last night and the Nurse said he is looking very good for someone so small. They took away his billirubin lights completely, which is a great thing because it means his jaundice isn't really an issue at this time. He is doing well after surgery, they say he is tolerating everything well and that his condition is stable. They did do a brain scan yesterday and unfortunately found 2 brain bleeds on either side of his little head. They are at a stage two right now. According to the Nurse and the Nurse practicioner a stage two is not that bad, and they are thinking that the bleeds might just re-absorb. They will be doing another brain scan on Tuesday the 19th and then they will be able to see if the bleeds are getting worse or if they are correcting themselves. They say it is pretty common in infants so small to have brain bleeds and that it could be much worse, so for Spence to only have a stage two is great. If for any reason the bleeds should get worse or if more should appear they would watch him very carefully and do scans frequently. If it came to that point they told us of one option which would be putting in a shunt to relieve the pressure on his tiny brain. Unfortunately if they do get worse it could lead to Neurological problems later on down the road. We are greatful that at this moment Spence is only at a stage two and only has two bleeds. We have peace in knowing that Heavenly Father has his hand in all of this, we just know that our little Spence is going to be fine. The Nurse also said that usually if a infant of this gestational age is going to have bleeds it usually occurs in the first 5-7 days of life, and what they see after that usually is just the residual and most likely will re-absorb. So hopefully most of the bleeding has already occured and what they are seeing in Spence's head is just the residual .. I am thankful for all the prayers, we definately feel them and I know little Spence is feeling them too

Spence's Surgery

They took Spence to the OR at 7:30pm, they had to wait about 45 minutes to make sure that he was stable with the anestisia and they were finished at 9:15pm. Kimberly said normally Spence is really fiesty but he was a "limp noodle" with his mouth hanging open when they brought him back upstairs. His body temp was a little low, so they put a heating blanket on him.
The doctors thought Spence had a perferated valve. The nurses said that he was not suffering, his blood pressure was stable and he had a soft tummy, so they didn't think it was too bad. When they got Spence in surgery they foudn that there was no perferation. So they just cut his intestines where the blockage was and cleaned it out. So now he has really clean intestines. They didn't have to cut off any intestine. There's a little cut on his tummy that has 2 pieces of his intestine sticking out (where the incision they made in his intestine is). They're going to put a colostomy bag on it (which will connect the two pieces of intestine). Spence stayed stable during the surgery and didn't bleed much so they didn't have to do a transfusion.
When Spence gains weight and is about 3-4 lbs. they will sew his intestine back together. The nurses said Spence looks really good and is just relaxing. They hope to start to feed him in 14-15 days.

*Thomas S. Monson said during conference that he could feel the prayers of the people. Joseph told kimberly " I wonder what that feels like" - Kimberly said they now know exactly what that feels like. They are so greatful to everyone that is praying on Spence's behalf. They feel peace from Heavenly Father and its because of everyone that is praying for them.*

X-ray update

The x-ray found a hole in Spence's intestines, which has been causing stool to leak inside his body. They are preping him right now to have surgery in a couple hours.
The surgery process:
they'll take his intestine out and see if they can find a dead spot. If they find it, they'll cut it out and try and sew back together.
The doctors said they think he'll do well.
He'll be on 4-5 antibiotics afterwards because they don't know how long he's been leaking stool inside his little body.
Everyone pray for Little Spence!!!

2:15pm Monday

Kimberly just called. She's at the hospital.

Spence has been going to the bathroom, sometimes, by himself, which is good, but he has some kind of blockage in his intestines. They are going to do a "contrast inama" (Libbi, maybe you can correct me on the spelling - i couldn't even google it, so I know I have it wrong). Which is an x-ray to show where the blockage is. They've done one before through his bottom and now they're trying one through his mouth. This procedure is about to begin. Then they will know whether or not they'll have to do surgery tonight. The doctors say that he is stable enough that they think he'll handle the surgery well. He's still intubated because of the gas problems he's having, but they did take away a bilirubin light today, so he only has one left.

Update from Daddy

They had to change out the tube that goes in his mouth while we were there so they turned off the lights and took off his hat and we got this picture with his eyes open a little.

In the Mothers' Day poem it says 'Your angel will sing for you and will also smile for you. And you will feel your angel's love and be very happy.'

Earlier today I took Kimberly to the hospital so that she could see Spence. She told me that she put her hand on his little head and on his behind and sang Jesus wants me for a sunbeam and I am a child of God and one of his alarms went off. His oxygen saturation had gotten too high. When they get agitated the 02 sats go down. When they get nice and relaxed they can go up. This little angel's mother was singing him a song and he was relaxed. How soothing the touch of a mother can be.

Everything is holding steady, his tummy is the same, his bilirubin has dropped which is good but the immediate concern is his bowels so they can start feeding him. He had a transfusion today and he has gained some more weight he is up to 1lb 9 oz

For all the females reading the blog they give him fat through his IV.

We want everyone to know that we feel the prayers in our behalf. We have a peace that is not man made. It is still hard but the Lord has blessed us and continues to do so.

Orson F Whitney said

"No pain that we suffer, no trial we experience is wasted. It ministers to our education, to the development of such qualities as patience, faith, fortitude and humility. All that we suffer and all that we endure, especially when we endure it patiently, builds up our charecters, purifies our hearts, expands our souls, and makes us more charitable, more worthy to be called the children of God...and it is through sorrow and suffering, toil and tribulation, that we gain the education that we came here to acquire and which will make us more like our Father and Mother in heaven."