Christmas pics~

Christmas pics...

Merry Christmas...

Merry Christmas to all. Christmas is a great time of year to reflect on the birth of baby Jesus and for us to reflect on the birth of our little miracle baby. Dylan is doing great!! Mommy was able to give him another bath today and he didn't even cry one bit, he loved it!! Daddy took pictures so we will post them tomorrow. The even bigger news is that yesterday on Christmas Eve, Dylan got moved into a crib!!!!!! This is great news and another milestone and we are one step closer to going home!! He is loving his new area and mom and dad really love it because we can be closer to him and much easier to change his diapers!! Dylan is weighing in at 4 pounds and 5 ounces now and eating 35 cc's of alternating breastmilk and preemie formula with iron. He is scheduled to have an eye exam this week, we have noticed that his eyes have turned to hazel color like his mom and dad. Dylan is awake a good amount of time now and today after his bath he was wide eyed just staring at himself in the mirror, it was very cute! He is still on a CPAP of 9 and the Dr. notified me today that they will probably go down on the CPAP again this week. Nothing much has changed with Dylan, we are loving every minute of him! We like not having much excitement, that is a very good day. Christmas in the hospital is something we definetly don't want to make a habit of but this year we have a lot to celebrate, being here with our healthy, growing baby boy, we can definetly deal with that. We brought Dylan's presents here for him to help open and we even thought the nurses deserved something for taking care of our precious boy today and being away from their families. We stuffed his stocking and added ornaments to his tree, our littly buddy is in the spirit with his own special preemie santa hat and blanket as well. So from our family to yours, we hope you have had a very Merry Christmas. We sure have and thanks to our families for understanding our new priority in life, being here with our baby and celebrating many things with him. We can't wait until next year when he will be running our house and opening presents on his own, that will definetly be something to smile about! Merry Christmas Dylan & Dalton and to everyone~

Daddy's 30 today...

Today is Brad's 30th birthday and him and Dylan are having a great day! Dylan is weighing in at 4 pounds and 1 1/2 ounces now. He is eating 35 cc's every 3 hours, they are now alternating between breastmilk and preemie formula with iron. The reason for this is to give him extra protein and calories. Dylan this week has decided to pull his CPAP tube out 3 times. One time on Saturday night, one time on Sunday when daddy was holding him and one time last night when mommy got there. All of the times with out the CPAP tube or anything assisting him he was stating 100%. This is incredible, but the decided to still put the CPAP tube back in eventhough he was showing them what a big boy he is. The reason they put it back in is because his settings are on 9 and before they like to try the nasal canula they like the CPAP to be at 4. If they switched him right away to a nasal canula he could take a couple steps backwards if he wasn't ready for it and since he is doing so good they decided not to try that yet. Last night he had a hard night, he was up crying all night. So the nurse picked him up and held him for 45 minutes and the little stinker was fine. This makes us feel terrible that we weren't there with him because he is probably getting tired of being lonely and I am sure he is more than ready to come home. Still no time frame has been given to us but we are realistically thinking the end of January some time will probably be close to accurate. So Dylan is doing great, we put a Christmas tree in his room and Santa has already came to visit and brought him a book. So things are great, we are just growing, eating all of his food, breathing good and thanking god that his eyes and tummy are just fine! He had a bath the other night and daddy assisted with it, pictures to come! We love you Dylan and Happy Birthday Daddy!~

Great week / 3 months old on the 15th....

Baby Dylan is having a great week. He had his follow up eye exam yesterday where they actually did a full exam. The doctor had great news, his eyes look great after surgery!!! The doctor was very pleased and said that Dylans' eyes couldn't look better and that he couldn't be happier!! There are still some risks involved. The retina could still detach and Dylan still could have poor eyesight but the chances of those things were about 60% before the surgery and that can be halved since he had the treatment. This is great news!!! They will re-check his eyes in two weeks. The Plus disease he had in his eyes are completly gone and the welds they made are healing nicely. So he is seeing normal right now! His weight is up to 3 pounds and 11 ounces. He is eating 1 full ounce of formula plus 2 cc's additional every 3 hours and loving it!! He is on a CPAP of 11 now and loving that as well. Because of his eyes they are keeping his oxygen >=40-60% right now and he is usually at around 40%. He has had a few spells every couple of days or so where he drops his heartrate and O's but comes back up on his own. This is usually after his feedings which means he may have mild acid reflux or it usually happens when his CPAP tube in his nose needs to be replaced. He is very much awake now usually at least 4 hours if not more a day. He is getting a bath 1-2 times per week and loving the water too. It usually takes him a couple of minutes to get use to the water then he loves it. And those lungs are clear now, when he is mad you really hear the cry loud and clear!! And he will pick up his head if he is on his tummy and move it back and forth and hunch up on his fore arms and knees and scoot. He is getting to be a strong little munchkin. He had a head ultrasound yesterday and it was negative as have been his previous 3, this is tremendous news. They did it because he is at the end of 36 weeks gestation and that is usually when they check it again for preemie babes. Things are great for baby Dylan, prayers are working. We pray every day that he keep breathing good, going potty, growing, eating all of his food and his eyes are just fine. God has blessed us with a miracle baby for sure. 3 months old tomorrow, time has gone by so fast. We love you Dylan and are thanking god that you are with us today~

Pictures we promised...

Hunting weekend...

Daddy is deer hunting this weekend, Dylan is hoping daddy gets a big buck!!! Baby is loving his new room in Bay 2. It is nice and quiet so he can eat, sleep and grow!! He is doing great, eating all of his 28 cc's of food now and weighing in at 3 pounds and 7 ounces. Brad held him the other day and I held him for 2 hours today. He was wide awake the whole time which was nice to be able to look into his eyes and tell him how much I love him, and he even cracked a smile!! Things are quiet on our end and we are wanting it to stay that way. If daddy gets a big deer that will give us enough excitement, he is waiting for the day his new baby and him can do that together! Here are some pictures over the past couple of weeks, he looks great! We are praying every day that Dylan continues to grow, eat, go potty, breathe good and his eyes will be just fine! You are truely a miracle baby Dylan~

Bay 2...

Today is a big day for Dylan, he got moved to Bay 2!!!! He is getting to be an even bigger boy now! Bay 2 is not as critical care as Bay 1 so this is great news. He will go right from Bay 2 to home!!! He was put back on CPAP the day after his eye surgery and has resumed regular feedings 26 cc's every 3 hours with 30k fortifier. He is weighing approx. 3 pounds and 7 ounces!! He is doing great and he looks even better!! Daddy got off work today and was able to be up with Dylan for the big move. Daddy was also able to hold him for almost 2 hours and they both loved every minute of it! One of the eye doctors came yesterday and glanced at his eyes and thought they looked great, the ROP exam will be next week and it still may be too soon to tell if there has been any changes. Dylan is getting more of a little personality now about 1/2 hour before his feedings he gets a little fisty throwing his arms around and crying but as soon as he gets his pants changed and fed he calms himself down wonderfully and goes back to sleep. He is back in his isolet bed and loving it as well. We couldn't expect a new baby to do anything more. There is a wonderful God watching over our precious child and he is truely a miracle and one of Gods own. The days are getting better by the day and we pray we continue on this path towards having our baby home with us very soon~

Post Surgery update...

Dylan came thru eye surgery very well. The Dr. Olson was very pleased with how the surgery went and is very happy with the way it went. He was just getting done with the surgery at about 6:15pm, it took longer than expected but the Dr feels comfortable with how it went. He was very happy that he did not wait to take a look at him until Wednesday. He will recheck his eyes on Wednesday and then one week later. When he dilates his eyes next week it may still be too soon to tell if the surgery worked but the Dr said that the surgery went so good that he will probably not have to have another surgery. The Dr. explained the surgery as that of stopping a forrest fire. He said that sometimes in order to stop the fire you have to make it worse before it gets better. So this is the case with Dylan, the laser basically burns or "lightly damages" the outer part of the retina. This is so the growing blood vessels can't go any further than this "burned" part of the eye. The part that they lasered was the perephrial vision part. He will though be able to see out of that part of the eye eventually but for now lasering this part hopefully will stop the blood vessels from growing any more there and hopefully will also stop the Plus disease blood vessels from getting thicker. So our little man continues to amaze us. He is a gift from God, we are continuing to pray like mad that he gets bigger, stronger and comes home soon. God Bless You Dylan~

Update...

Waiting to hear on the results of the surgery. There are two doctors there the Pedatric Opthamologist and the Retinaologist. They said that Dylans eyes were at Stage 3. Both of the doctors were going to work together. But before when they were putting the vent tube in, one of the Fellow doctors was tilting the bed back to level and when she did this Dylan laughed. She said the staff Dr and her looked at each other so she did it again to see what he would do and when she tilted the bed again, he laughed again! The Fellow Dr said he shouldn't be laughing and the Staff Dr. Klein said, sure he should be laughing afterall he is due to be born in just a month." So that was the enlightning part of the putting the vent tube back in. When Brad and I went to see him after that and before the surgery he was moving around, arching his back and sucking on his fingers. You wouldn't have really know he had been givin sedation at all, what an amazing boy~

Eye Surgery...

Today Dylans opthamologist decided to do his eye exam instead of waiting until Wednesday. The doctor said he had been thinking of Dylan all weekend and wanted to do it today rather than waiting. The exam showed Plus Disease and Zone 2, the doctor was going to get a second oppinion tomorrow and possibly do the surgery tomorrow night but then decided that he better have the laser surgery today. So right now as we wait they are putting his vent tube back in, they have to do this for surgery because they will temporarily paralyze him for the procedure. During the procedure they will basically laser off the extra blood vessels and weld the retina where it needs to be. They will do between 500 and 3,000 welds to do this. I believe the Dr. told me there is a 1 and 5 chance of blindeness from this or a 20% chance. Most of the time this does work and babies eyes will be fine. The other times there could be severe eye damage or blindeness. But we know that God is watching and Dylan will be just fine. This unfortunately is another hurdle we are going to get over. Before the eye exam today they decided to up his feedings to 27 cc's every 3 hours. They have stopped his feedings as of 3:00pm today but hopefully by this evening they can take his IV out and resume his feedings. They hope to have him back on CPAP very soon, worse case scenario being not for a couple of days or weeks but hopefully his lungs will be fine and they can take out the vent tube tonight or tomorrow. Brad and I were just down with him before they made us step out, he was responding to our voices and opening his eyes for us. He even cracked a smile or to as my eyes weld up with tears of what he is going thru. We are very optimistic he will be fine and his vision will be okay. He is so strong and the doctors here are even saying that as well. He is truely a miracle and one to hop over these obsticles that get put at him. He is going to have quite the story to tell when he gets older and hopefully he doesn't remember a minute of it, we just want him to remember growing and getting bigger and happy times with his family! Updates to come after surgery~

Dec 1...

Dylan has had a good past couple of days. He is officially 3 pounds and 3 ounces now without any fluid weight. He continues still to have no IV's at all, just mommy's milk with extra calories which is even better! Today he graduated up to an isolet bed. This bed is enclosed and the setting is at room air, when Dylan needs heat it will kick on if he needs it but the bed is set to a certain temp and often the nurses come and check Dylans temp to make sure it corralates. He is still eating 24 cc's every three hours but now he is getting 30 extra calories of fortifier instead of 24. This will help him get chubby!! He is loving the CPAP and we can definetly hear his cry now that is vocal cords are not strained from a tube in his throat. The CPAP is wonderful for Dylan right now. This week Dylan had another eye exam, this one was concerning. Dylan has the early stages of ROP or Retinopothy of Premiturity it is called. This is potentially when the preemie babies blood vessels around the eyes are not matured, they either grow extra blood vessels or like in Dylan's case the blood vessels that are there start to dilate. The Dr's want to control the amount of oxygen that Dylan is getting to his eyes to prevent the retina from detaching which would cause blindeness. So they are watching his oxygenation closely, they are keeping him at 50-60% oxygen and stating 94 = or above. The opthamologist will recheck him next wednesday and if there is any chance that his case has worsened they would do laser surgery to help prevent from the worst scenario. Unfortunately all we can do is wait, hope and pray that he is going to be fine. He has overcame so much, we know he will be okay but the phone call we got is still nervewrecking. So pray for our little miracle, he will come thru this just fine and his big brother in heaven is working so hard to keep Dylan healthy and strong. We love you Dylan, keep fighting and we can't wait to have you home~ And P.S Dylan is dressed in a onsie today, it is precious~

Pics...

Nov 27..

Our little guy is doing so well. This weekend he got out his perk line and for the first time does not have any IV's or anything!!! We are very excited about this as this is a big step for Dylan. So now the only nutrients he is getting is from his mommy's milk with fortifier!! It is so nice to see him without all of these lines running all over and around his bed, just him and his CPAP and that is it. He is loving the CPAP and staying at around 40-45 & oxygen with that. They have been able to lower his CPAP setting a little bit to which is great. He is now eating 24 cc's with extra fortifier and not having but trace residuals so that is better yet! Today they are giving him some iron with his feeding and an extra dose of Thyapholin to help with his oxygenaton. Mommy got to Kangaroo yesterday for abou 2 hours and when we had to put him back in his bed he was not a happy camper for about 45 minues or so, it made Brad and I feel terrible. But he calmed down and daddy finally changed his diaper for the first time!!!!! That was a big step! And when I went up to see Dylan on Friday night he was in a bouncy seat, yeah a bouncy seat. I about fell over!! The strap to hold him in had to be folded over 3 times so he would fit, it was so cute and for 2 1/2 hours he loved it!!! So we are so thankful for the prayers and keep them coming, they are truely what keeps us going and they are definetly working! Mommy and daddy got his room all put together with the wonderful gifts you all have got him, it is so cute. His bed looks more comfortable than ours, he will love it and we can't wait to have him home. Here are some pictures from the past week or so~ We love you Dylan, keep fighting buddy~

Happy Thanksgiving

Happy Thanksgiving!! This is the first Thanksgiving for our little miracle Dylan and he is doing great! It is hard to imagine last year at this time we were in NYC for the Macy's parade and not even imagining where we would be this year at this time. Wow have our lives changed, and for the better I may add. Thanksgiving is surely a time of reflection, reflecting on our past, present and future and not knowing what any of those times may hold for us to be thankful for. We are sure thankful that we have had two beautiful boys that both have melted our hearts. One is in heaven holding strong for his little brother fighting thru each and every day here with his mommy and daddy! We have our family, here and together and we couldn't ask for a better day to reflect on each other.
Yesterday Dylan got his vent tube out of his throat and was put on CPAP!!!! Yeah!!! It was a wonderful day to be thankful for. He is loving it as well. It takes a little bit of time for him to get use to breathing on his own and realizing that he needs to breathe with his mouth closed so the oxygen he is getting doesn't escape out his mouth. He is sucking on a pacifier most of the time and doing great with it. This also helps to keep the air in and helping him have deep breaths. He is eating 18 cc's every 3 hours now which is great. He is only having from 0 to trace to a few cc residuals but that is okay, overall he is tolerating them well. The other thing that CPAP does is puts extra air into their tummy so it takes him a little bit to get use to that and eating all of his food. And another thing to be thankful for today is Brad got to Kangaroo with Dylan for the first time!!!!! This was definetly a precious moment. When I saw the love of my life all snuggled up Kangarooing with the other love of my life, my precious little boy, it melted my heart!! Pictures to come definetly!!!
So what a wonderful Thanksgiving for our Holub family and I hope it was for all of you as well. We have so many things to be thankful for, family, friends, healthy lives and much much more. We are mostly thankful that God has blessed us with a family and a new baby where as some people never have this opportunity to snuggle with a baby of their own. God has created wonderful things for us and is giving us the strength to get thru each and every day and live each day as if it was our last. God has blessed Dylan and is giving him the strength to keep fighting so he can come home soon and this is what our family is most Thankful for today~

Nov 18...

The past few days have been pretty good for our little man. The have stopped his antibiotics because they were feeling that his left shift or infection numbers were coming down nicely so last night at 10pm was the last dose. He has tolerated his feedings great. Today after rounds we are up to 14 cc's every 4 hours. This is almost 1/2 of an ounce and the most Dylan has ever had and so far he is tolerating them wonderfully and we want to continue on that path!! The other night they did a CT scan on his belly to make sure that everything was looking good and it was!! It was looking so good that they cancelled the upper GI test that they had scheduled for him to have on Thursday. The only thing they did see was the hernia which we already knew about. So this reassures us that there are no tummy issues!!! Yeah!!! That is big news so now we can just focus on the little guy eating, breathing good and growing!! Last night though Dylan had a couple of blood gases that wern't the best so they ended up going up on his vent settings a bit. This concerns mom and dad because they had been at the lowest they can go for the past 3 days. The nurse reassured me this morning that this is typical of a preemie baby and it doesn't mean anything that they are concerned about. His settings are still low just not the lowest like they were. So now we need to focus on him breathing good so we can get them back down and a step closer to CPAP. He is smiling a lot and awake a good amount of time but we like to have him sleep because that is when he grows the most!! So things are looking up and we love that. We are thinking we are on an even path closer to home~ We love you Dylan~

Nov 15...

Our baby is 2 months old today, Happy Birthday buddy! It seems like time has just flown by. Little buddy has been thru a lot these past two days but he is doing great. Yesterday his infection number CRP went up from 3.5 to 5 and it should be .5. So the doctors were a little concerned. They ended up putting a new perk line in his other leg because the leg where the other one came out from is pretty puffy and red but the swelling is going down. So they have been feeding him but he has had a few small residuals left in his tummy after each feeding. So they decided to do some further testing to make sure that his tummy is okay rather than waiting for something to happen if it is not okay. Plus his infection numbers went up a little rather than down yesterday so they were a little concerned. Last night they did a CT on him and he handled it well. The results are not back yet this afternoon. So today they wanted to do an upper GI well they packed him up and transported him to the area where they do that at and did a tummy x-ray. The x-ray showed he still had some contrast in him from the CT last night so they couldn't do the GI. So the had to pack him up and move him back to his room. They fed him hoping it will pass the rest of the contrast thru. Tomorrow morning they will do another tummy x-ray to make sure the contrast is gone and then do the GI tomorrow.
This morning his CRP is back to going down which is good. Today it is 3.7 but still showing there is infection in there. The results from the spinal tap they did the other day were negative which is great! He is still around the 4 pound range for weight, they have been giving him the lacix to have him pee off the fluid and he sure is! During the spinal tap he pee'd all over his bed, daddy was proud of his boy for that!! So we are waiting for these tests to get over with and tell us something if there is something to tell they can fix it and he can be on his way to growing and eating and coming home! The doctor made the comment Christmas is coming but we aren't pushing for that because we want him to be completely better so we don't have to go back there again, we want to keep him home once we get there! So keep fighting little man and we are praying like crazy for you~

Nov 13...

Today is a pretty good day. A little mishap overnight, Dylans "perk line" the line which goes from his leg to his heart to administer medicine thru, came out or went bad. Poor little guy, they have not yet decided if or when they will put another one in. The issue is that his IV's only last a few days and certain meds can only be administered thru a perk line rather than an IV. His weight is down 10 grams today but he still has some edema to pee out. He has pooped 3 times on his own which is a major ++!! They are now feeding him 4 cc's but every 3 hours instead of every 6. His infection is getting better though his numbers still show that it is there. His CRP is registering 3.5 and it should be .5 or so. So slowly it is getting out of his system. He started to open his eyes again today the nurse said, so we know he is feeling better. Those prayers and blessings are really working and keeping us going thru every day. When times get tough we just remember those people that are pulling for him and he fights his way thru everything~
Here are some pictures from the past week or so, volunteers at the hospital made this pumpkin hat and booties, they are in the baby book for sure!~

Nov 12...

Dylan is doing much better this weekend. His infection is still there but getting better. He has really started to pee out some of the fluid so he doesn't look so puffy and his weight today is 4 pounds 3 ounces. He has been able to lay back on his belly which he loves!!! His vent settings are now down to the lowest they can be before they take the tube out and put him back on C-PAP. He will surely love getting that tube out! Hopefully some time this week but the doctors want to be very sure before they do it, they don't want to have to re intubate him again. He is eating again, 4 cc's every 6 hours and tolerating them well. So basically we just wait for the infection to clear up completly and him to grow even more! He is more active now and hopefully this week mommy and daddy can hold him again. He is smiling and opened his eyes for the first time in 4 days, it was very nice to see them especially knowing he is feeling better. So we are on the road to going home and that is what we want. Prayers are definetly working and little buddy is still putting up a real big fight which we love~

Nov 8,9,10...

Poor baby Dylan cought another infection over the past few days. He had a bacterial infection in his trachea which turned into a blood infection. The second blood culture grew a certain form of ecoli. This is pretty serious in preemies. They had him originally on a broad spectrum antibiotic but when the second culture grew the ecoli the antibiotics he was on arn't specific for that. So yesterday they were able to change the medicines around to some that will specifically help treat that infection. Today he is doing better. He is peeing great whereas the other day he wasn't peeing much. His CRP and White blood cell count have started to slowly come down which verifies that the antibiotics are starting to work. He is pretty sick and uncomfortable so they have gave him a mild sedative to keep him calm and restful. From a resperatory standpoint he is doing good. They have not been able to come down on his settings because he is stick but they have not had to go up either which is even better. He is at 35-45% oxygen the past two days. Today they have started to feed him again, 4 cc's every 8 hours. They will start slow again to keep things moving along. So he is really fighting thru this, he is such a strong little boy. His weight is up to 4 pounds and 4 ounces with about 10-12 ounces of that being fluid. They want him to pee out a good amount of the fluid the other amount he will grow into. He looks good though, we just want him to get better and he will!! He is fighting and he has many people praying for him and watching him and strengthning him from heaven above! We love you little man and you will get better soon so mommy and daddy can hold you~

Nov 7...

Today is a pretty good day for the little man. He has a new conventional vent now, they didn't think he needed the high frequency anymore and so far he is loving it and is only on 30% oxygen. Mommy changed her first poopy diaper last night, that was good especially since he has gone on his own now without any glycerine! They were able to up his feedings to 11 cc's every 3 hours with fortifier!!! So his weight is up to 3 pounds and 6 ounces today, at least that is what the scale is showing. The scales are a little off today they are thinking and not just with Dylan so they are just closely monitoring his weight. He does have some edema still probably 100-150 grams or so but accoridng to his fluid intake and output the 3 pounds and 6 ounces may or may not add up. We do know he is sure growing so if the weight is off a little bit we still do know just by looking at him that he is definetly getting bigger. The doctors are impressed and it is very good that he is tolerating his feedings!!! He was very smiley for his mommy and daddy, he was alert and always peeks to make sure we are still there when we are quiet! He is very eager to come home soon and mommy and daddy just can't wait for that day to come! There is definetly several people including his big brother encouraging him and helping him get stronger every day~

One week later....

Sorry everyone we have been so busy and have not had a chance to update the blog. Dylan has had a great past week and is still doing great. The doctors have up'd his feedings to 9 cc's every 3 hours now. This is the most that Dylan has ever had and he is tolerating them great with only trace residuals every time. He is sure growing like a weed his weight is up to 2 pounds and 12 ounces now, he has been at that weight for a couple of days now. They are waiting another couple of days to re'add the fortifier back into his milk just to make sure that he tolerates the amount first before they add the extra calories. He is off of his antibiotics again so we just keep on praying that he continues to not get any other bugs. He has just a little bit of edema in his head and neck area but most of his weight is just him growing and getting bigger! For Halloween the group of volunteers the UIHC has made him a little pumpkin hat and booties, it was the cutest thing we have ever seen. Hopefully soon I can get some of those pictures posted on here, with his little chubber cheeks it fit him perfect. Brad was in a wedding this weekend in Galena so we were able to get away and enjoy each other for a little bit. The wedding was absolutely beautiful and just reassured our love for each other and how perfect our family is with our new little bundle of joy! So for now we are just watching him grow more and more every day and thanking god for all of the blessings we have had that are helping him stay healthy and get healthier. He is fighting and fighting and we know he has those from above helping him even more!! When we see him smile every day it just melts our hearts, the love we have for each other has now blossomed into our beautiful baby boy~

Oct 25...

Well our poor little boy keeps having small roadblocks get in the way, but he is stepping right over them. Today the pedatric surgeons looked at his tummy again and found out he has a hernia. This seems to be common for preemie baby boys they are telling us. They will do surgery but not until he gets bigger. The hernia is a result of his previous tummy issues and his bowel poking thru. Other than that he is requiring only 25 % oxygen, which is great news!!! They are trying to figure out what type of infectgion is going on so they are doing a couple studies to see plus waiting to see if the blood culture grows anything. Depending on how his tummy continues to look and if they determine what type of infection he has going on they may start his feedings again this weekend. The medications are definetly helping him to feel a little better, although the tummy is understandably still very sore, he is doing great from a respitory standpoint. Last night Dylan was really awake when we were there and studying his daddy. He wouldn't let his daddy leave his bedside, it was cute. Dylan was squeezing his mommys finger tightly and staring into his daddys eyes. He is fighting away and last night the head doctor even told us what a fighter we have! That is very assuring when a doctor says that, Dylan has a little reputation already! Mommy and Daddy just knew this from the beginning, we are praying for you little buddy!!

Oct 23,24..

Dylan has had a hard past couple of days. Poor little guy hates that vent tube and decided to pull it out again yesterday. So they had to put it back in but got it in wrong the first time so they had to pull that one out and put another new one in. This tube is bigger so this will help him not have so many air leakes. The issue with the air leak and the small tube was that as fast as the air was going in it was leaking out because the tube was so small. So they put Dylan back on the high frequency vent to let his lungs not be so collapsed. Well also the poor little guy is now showing signs of another infection. They are concerned with his tummy, they have done several x-rays and so far it is looking okay but when they touch it Dylan just cries and cries. It is a little puffy and red, he had a large stool today with a few signs of blood flecs in it. This is concerning but they are just watching him very closely. They have now stopped his feedings for the mean time and started him back on a full course of antibiotics. This will help what ever type of infection is going on in him. They did a blood culture which unfortunately will not show anything for at least 72 hours. Being the fighter Dylan is, he will get thru this. This is just one of those steps back for now. He is not giving up and we know that his big brother Dalton in heaven is protecting him and giving him the strength he needs so he can get better and come home with his mommy and daddy. These are scarey times again but we will get thru it, we still are holding onto the optimistic feeling of hope we have. This is how we are getting thru these hard days. Our baby is daddys little superman. We love you Dylan and are praying for you day any night little man.

Oct 20,21,22

Dylan had a great weekend. Mommy even got to Kangaroo with him, this is the first time doing it at the UIHC. He loved it and mommy did too. They do things a little different there, they only let you do it for the max of 1 hour and you hold him in a recliner versus laying on a bed. It was a great experience. They ended up changing Dylan back to the Star type vent, this is because the new computerized one he was on that didn't make any noise, it was giving him breaths when he didn't necessarily need them. This Star type vent is better for wheaning him back towards the CPAP. They plan on getting him back to the CPAP, which is the tube in his nose versus his throat, in the next 2 weeks or so. They have up'd his feedings now to 7 cc's every 4 hours, he is handling them well. He has even pooped on a regular basis now, this is HUGE news considering the tummy issues he had before. He is still destating every now and then but the Dr. said today this is just part of him being a preemie baby. If he was inside his mommy he would only be taking 4 breaths per hour and now that he is born we are expecting him to take 60 breaths per minute. So it is understandable that he gets pooped out every now and then but he is doing great breathing on his own!!! So our little miracle is still fighting, and he is getting bigger. He is 1 pound and 14 ounces today and looking bigger every time we see him. He will really look HUGE when he gets to 3-4-5 pounds when in reality he will still be just a little guy. We are having small positive baby steps which is great, but there is still a long road ahead so keep those prayers going! We love you Dylan.

Oct 19,20...

Dylan is doing wonderful!!! In the past two days they have been able to increase Dylans feedings to every 4 hours and from 2 to 4 to now 5 cc's. He is digesting everything all of the time. They have went down on his vent settings and he is between 35-40% oxygen. They have said that they could easily put him back on the CPAP but because he is so small they don't want to do that and then have something happen and have to put the vent tube back in. So rather they are just going to leave the vent tube in with low settings like he is on and let him grow then they will change him to the CPAP. He did have 3 dirty diapers yesterday which is great!! They ended up giving him a dhiratic or something like it for him to get rid of some of the extra fluid he picked up after surgery. He has gone potty a lot since this and it has helped quite a bit also. They just didn't want his body absorbing this extra fluid. He is just over 800 grams today and looking good. He is so active and loves to sleep on his tummy. He gets his legs under himself and pushes his body forward and up in the air, it is hilarious! He definetly trys to act like daddy's little superman!! He is still off all of his medications so we are praying for NO infections!!! We just want him to sleep, stay healthy and grow so he can come home with mommy and daddy soon!!! Pictures to come this weekend, I promise!!! We love you Dylan!

2 Days Post Surgery...

It has been two days now since our little star went thru surgery and he is doing GREAT!!!! He is such an amazing little boy, I know that Brad and I say that so much thru the day but it is true! Today he is down on his vent settings, yesterday they started feedings again and today they increased the feedings. Today he is down to room air for oxygen which is truely amazing and his blood oxygen is at 100% which is amazing to. They have stopped all of his antibiotics which is great but scares us a little because now more than ever he is suceptable to anything... as far as sickness goes. So we have to be very protective again which we had planned on anyway and I would think that most people would understand, we sure know that Dylan does! So they have also stopped his Morphine and yesterday they took out the drain under his arm from surgery. So we are definetly moving in the right direction, he must be very anxious to meet his puppy waiting for him at home!!! I am not sure of his weight right now but hopefully it will increase as the feeding do. He is still going potty a good amount we are just waiting for him to go #2 since the surgery is over with. So daddys little superman as Brad calls him is doing great, we know that all of those prayers are working!!!! We all love you Dylan!!!

Surgery day...

Well today was the PDA ligation to close the open ductus in Dylans heart. He did very well with the surgery, as well as expected. The ductus was actually quite large, larger than expected so they ended up using a metal clamp instead of a suture. (sp) As long as his body excepts the clamp the tissue etc will just grow around it. The next 24-72 hours may have a few steps forward and backward as the doctors really monitor him. His body needs to get use to the blood flow going the right way instead of the wrong way as it was before with the ductus open. So our little fighter is still fighting. He is heavily sedated and they say it will take possibly a couple of days before everything wares off. We couldn't ask for anything more than what we have now, a baby who is getting healthier and stronger by the day! God Bless you little man!

Oct. 13,14,15 (1 month old today)...

Well Dylan has had a pretty good past couple of days. They have begun feeding him again which he is loving a ton! They ended up putting his vent tube back in on Friday. He was handling the CPAP very well but his blood gases showed that he was getting a little tired of breathing on his own and since he has to have it in for his surgery tomorrow they decided to put it back in to give him a little more rest. He has pooped several times which is even better news, this is especially great news because of the issues with his tummy. Mommy has been changing his diapers reguarly now so I am all broke in, we just have to get daddy into this habit!! Tomorrow is the PDA ligation to close the open ductus in his heart. The surgery is expected to take an hour or so and they do it right in his room which is good because they don't have to put him thru the stress of moving him to the OR etc. Mommy and daddy are a little bit nervous but the doctors and specialists here are the best so that makes us more comfortable. Starting tomorrow he gets a new doctor as the staff doctors have 2 weeks on and 2 weeks off. But we have been told that the staff doctor coming on is the head doctor so it will be just fine. We totally trust them but we have been so comfortable with his previous dr. and it is hard to see a new face and get use to new ways of doing things. Other than that things have been pretty relaxing which is what we like. The little fighter is still fighting, and that is what we want!!! He opens his eyes and studies his mom and dad when we are there, it is precious! We can't wait to bring him home and we are starting to get his room ready now for that wonderful day to come!!! We pray for you little buddy as you have surgery tomorrow, your big brother Dalton is watching over you and making you stronger every day!!

Oct 10/11th

Well the little fighter is still fighting, so much that he pulled out his vent tube overnight last night. So they decided to put him on a different type of support called CPAP, this is a tube in his nose that is giving him a little amount of support per minute but most of it he is doing on his own. He seems to be tolerating it pretty good but they may have to go back to the other type of vent with the tube in his throat in a day or so. He is scheduled to have surgery on Monday to close the PDA in his heart. Mommy is pretty nervous about him being sedated again but we know that this is what he needs. He is still going potty a good amount, this is great news!!! And he is looking really really good too. Daddy said that with the tube out of his mouth he has found his hand and thumb more than ever before. So things are looking good, the little guy is still being a fighter and we are more and more proud of him everyday. Daddy finally was able to hold his little boy last night for the first time. It was the most precious moment ever, I took pictures as I watched the twinkle in his eye as he held his son for the first time. He was a little nervous because Dylan is so small but he didn't show it a bit. Keep fighting Dylan there are lots of people praying for you little guy!!!

Oct 9th / Weekend update...

Well the little guy had a great weekend. He is looking great and is at 1 pound and 15 ounces for his weight. On Saturday they had to do a small emergency procedure. From the drain he has in his tummy some of his bowel started to poke thru from him being so active. So they had to sedate him and put a stitch in and so far so good there. I was a little nervous having him sedated again but he handled it well and is back to opening his eyes when Brad and I talk to him and moving around a little more. Today I was just in his room and a team of 6 surgeons came in to check on his tummy they decided spur of the moment to take out the drain in his tummy. They thought it looked good so I watched them while they did that. He only dropped his heartrate at the beginning and he handled it very well. He kept putting his hand up on the surgeons hand as if to say, "that is enough already."!! So he is down on his oxygen and vent settings which is great. He is still going potty a good amount which is good too. They thought this morning that they were going to have to put in that Central Line but this afternoon they decided that he is doing good so they are going to leave him alone for now and not do it. But it is always an option if need be tomorrow or in a couple days/ weeks from now. So we are maintaining which is what we like. He is such a fighter and really is trying hard to get himself better you can tell that just by looking at him. He is a sweetie and we are so proud of him and his strength. It is amazing how much you can learn from a little guy who is so small yet has such an amazing strength about him!!!

Oct 6th / Iowa Homecoming weekend....

Well today is a pretty good day. Iowa homecoming is this weekend and people are definetly showing team spirit around this neck of the woods. Brad and I are actually staying in Iowa City tonight to prevent us from driving back here in traffic tomorrow and trying to get a parking spot. Dylan is showing his team spirit with and Iowa Football blanket on today, it is pretty cute. His dad will appreciate that as we are big Iowa fans in our family! Dylan is down to 1 pound and 13.5 ounces, this is expected as he is getting out some of that extra fluid he has retained. He will probably have to have a small operation on Monday we were told today. They are having a hard time getting IV's in him, last night the flight nurse tried and was unsuccessful. So with this operation they will put something in him that is similar to a port. This way they will be able to draw blood from this as well as admin meds thru it. I am a little scared about this but it will prevent him from being poked all of the time, his heels are looking pretty "ouchy" from being poked several times per day. So they are probable they will have to do this on Monday but wanted to tell us about it today incase his hemoglobin gets any lower and they have to do it this weekend. They are still planning for surgery to surgically close the PDA (duct around the heart) in 7-14 days. They are weaning him off of one of the meds that is keeping his blood pressure up, it has been good so they decided to wean him off that. His blood cultures are still negative which is great news but he still does have the Grand Negative bacterial infection in his trachea, this is concerning but we pray it gets better though it probably won't be gone over night. The incisions they made on the side of his tummy are still looking good, the surgeon came in today and said that the tubes may actually back out on their own when they are ready. This is great news but they will continue to watch this closely. So we are still showing some positive baby steps but still a long way to go. He is a little fighter and continues to remind us of that as he still trys to move his head forgetting his vent tube is in his mouth and he can't do that. Today he found his hand and we have caught him with his fingers in his mouth a couple of times. It is so sweet!!!!! So pray for a good weekend, we will take these small positive baby steps any day for our sweet little boy!

Oct 5th...

Today is another pretty good day. Just a few new things have come up which unfortunately is to be expected. Dylan has continued to go potty which is great news. It has leveled off a little bit which is to be expected. His weight is down to 1 pound 15 ounces. Since midnight last night Dylan has had some epidodes dropping his heartrate and oxygen levels. They were occuring more and more so they have made some changes so his vent. Instead of having a continuous vibration from his vent he is now getting 20 breaths per minute from the vent. They are monitoring this and if need be they can increase it to 30 breaths per minute. They are thinking that this is a result of him having apnea, they are giving him the benefit of the doubt because he is afterall only 26 weeks and 4 days gestation. The second thing is that after the Echo yesterday they found that the PDA or duct in his heart is still open. Yesterday they were unable to hear a murmur but this morning they were. They will not give him medicine for this as St. Lukes did, rather they will do surgery to fix it within the next 7-14 days pending his tummy situation. The NEC or tummy situation is looking stable, they will continue to monitor that. The blood culture from the 29th is still negative and that is final. The one from the 2nd is still negative and they will continue to monitor that. They did another one here at the U last night and will watch that. The fluid from his trachea they took the other day is showing signs of the Grand Negative bacteria which is the infection he had before. He is already on medicine for this which is good. So overall a pretty good day, these small baby steps are good news. Brad will be up tonight he hasn't been up to see him in over two days, he is in for a real surprise, they little guy looks great!!! Keep praying, our little angel sure is!

Oct 3rd & 4th Potty today!!!

Today has been a wonderful day. Dylan started going potty again today. We have never been so excited about pee in our whole life!!! This is such a positive sign as the renal function was a huge concern this past week and a half or so. Dylan is up to 2 pounds 2 ounces or just over 1000 grams with his actual weight without the fluid retention being just over 600 grams. My mom and I and my aunt who actually works here at the UIHC listened as the doctors made their rounds this morning. His platelat (sp) levels are up which is good and the blood culture from the 29th and 2nd are still not growing anything which is even better!! Dylan looks great today, he is moving around and showing much improvement. They did another head ultrasound today and it looks good. They did an Echo on his heart and it looks like the prelimenary results are that the PDA is still open. We will have to wait and see what they decide to do with that. That is a little scarey but we will get thru it. There is still a long long way to go but these positive baby steps the doctors said we will take any day. There is a big man above watching over us and I know that our first little boy Dalton is watching over his little brother and giving him the strength. I will try so hard and get some pictures posted because you guys have got to see this little fighter...... he is a miracle. This team of doctors and surgeons here are amazing and trying everything they can but still giving Dylan all of the credit!! We still love any extra prayers we can get. Brad and I know he is in the best place and we are holding onto our hope now more than ever! God Bless you Dylan!

Oct 2 / day 1 at UIHC...

Dylan is such a trooper. He is holding up well. He isn't any better or worse today, Monday. He still has not gone potty which is now our number one concern. They are having a hard time getting a blood pressure reading on him but his skin coloring looks good and from a lung stand point things are good. His vent settings are good and oxygen settings are minimal. They were unable to get an arterial line in him which would prevent them from having to poke him to get blood as they do every couple of hours. So they are continuing to have to poke at his heel which is looking really really sore. They put a heel warmer on him to soften it before they draw the blood. They have him on numerous medications too many to name. He is still farely sedated but starting to come out of that. They still have him on a small amount of pain medication which is good because we don't want him to have much pain. Other than that this is really an observation period. The doctors are so nice and professional. You can really tell that this is the best of the best here. This place is huge. I think that it took Brad a mile walk or so just to find a pop machine! Dylan is in bay 1 which is where the sickest babies are in the NICU. Everything is a secured entry which makes us feel even more comfortable. Not just anyone can go in and see Dylan, only mommy and daddy unless we take in a visitor with us. The machines are mostly similar to the other hospital. His bed is different. It is not enclosed as the other was. There is a heater above his head that is sensetive to his body temperature. When the body temp drops the heater kicks on until he warms up to the exact temp they have set. There are numerous teams of doctors that come in and check on Dylan daily. Between 9:30-11am the doctors do rounds we are welcome to set in there and listen but for now we are a little nervous because the team is so big. Dr does give us an update and the nurses are always letting us know what is going on. We are encouraged and not giving up. Although mildly sedated Dylan does respond when we talk to him. He moves his mouth and legs and hands. He knows mommy and daddy are doing the best for him and he is our little fighter. He definetly is not giving up and neither are we!! Our little miracle baby is here and God is going to let us bring him home!!!

Arrival at U of I...

It took just over an hour for the nurses and flight crew to get Dylan ready for his helicopter transport. It was so scarey. We made the decision to have Dylan baptized before the transfer incase something went terribly wrong. The Dr still did not recommend this but I was flat out honest. We had already lost our first son Dalton because he was born at 19 weeks and 5 days gestation and there was nothing we could do. Because of the incompenent cervix we arn't positively sure another pregnancy will work and we have this beautiful baby Dylan here now that we arn't going to give up on. In his first 2 weeks and 2 days of life he has shown how strong he is and what a little fighter, he isn't giving up. Our family came and followed us for the 30 min trip to Iowa City. We arrived at the Childrens Hospital around 11:15. The nurse said Dylan had not arrived yet and they would notify us when he was settled. Around 11:30 still nothing, I called St. Lukes and they notified us he took off from the flight pad at around 11:05pm and should be arriving any time. At 11:33 he arrived. The flight nurses from St. Lukes came up to us in the family area and told us he was a trooper for the flight. He handled it well, his stats didn't drop and he kept peeking at them when it got a little bumpy. I felt so good that they had the courtesy to come and notify us that all was okay. Soon later the Pedatric surgeon came up and notified us that they needed to do a little procedure ASAP or he wouldn't make it thru the night. They were making two incisions on each side of the tummy to let some of the fluid drain out. This is for the NEC they are concerned about. They do this before they would do surgery for a preferation in the intestines. The procedure took only 5 minutes and they gave him sedatives and morphine for pain. Now we just sit and wait to see if this helps to seal over the preferation in the intestines which 50/50 chance it can. It was late, Brad and I had cried all we could cry. Our families were with us until 3 in the morning and we were scared for our little boy. But there is no doubt in my mind he is in the right place here. The Dr is wonderful and positive and I am holding tightly onto our glimmer of hope!!!

Transport Day October 1st...

I called the nurse this morning to see how Dylans night was. She said great. He had not gone potty much though but they were able to keep his vent settings down and he was not requiring much oxygen support. Brad and I were feeling positive about the day. So Brad stayed at home in the morning to do some yard work and I got to the hospital with some fresh milk for the little one. Within two hours things had changed. Dylan had a little blood in his stool and that was not good. This was a sign that the intestional concern was very much a concern, this is called NEC. They ordered an ultrasound of his tummy to see if there was a preferation in his intestines. There was not. This was good news but still scarey. Thru the day Dylan had two stools and they showed no signs of blood but his urine output was not much at all. Brad came up right away and we spent the day praying over the little guy. Because of high fluid retention his weight is up to 1 pount 12 ounces. Actual body weight being approx. 1 pound 6-7 ounces. Around 6pm Brad and I went to the cafeteria to eat supper. When we came back they had already done another tummy ultrasound. The results were not good. The nurse practitioner noticed a preferation in his intestional wall. This is what we did not want, this means Dylan does have NEC. She called in the doctor to have him look at the x-ray to make sure. The other thing is that St. Lukes does not do surgery for NEC and only the U of I does but they were not sure it was recommended or even if they would do it because of the things Dylan has going against him. 3 infections, very minimal renal function, low blood pressure and NEC. The Dr came in and gave us the worst news of our life. Dylan does have NEC and that Dr said there was less than a 1% chance Dylan would make it. Our poor little miracle who had fought thru his first two weeks of his life and now the Dr said this. I had my mind made up, we were transporting Dyland to U of I and that was all there was to it. The Dr at the hospital we were at did not recommend this because of the things going against Dylan. I was holding onto this little bit of hope inside of me, Brad was concerned and didn't know what to do. Well around 9pm we gave the go ahead to make the transfer. I wanted a second oppinion from a Dr who would possibly do the surgery. Dylan was being airlifted to the University of Iowa Childrens Hospital and we were praying like crazy. Our little boy just had to make it, he is a fighter and he knows his mommy and daddy are doing the best for him.

3rd Infection

Friday and Saturday the 29th and 30th the blood culture from two days ago is showing signs of a 3rd infection. Bacterial ecoli in the intestines. This makes Dylan at risk for an inflammatory "disease" called NEC. This is very dangerous for preemie babies. This is where part of the bowl dies and it has to be surgically removed. So they started treating Dylan for NEC by giving him a medication. He still had not gone potty much the later part of the 12 hours on Saturday. This was concerning, was his kidney function worsening? We didn't know. Dylan had been able to start feedings again though and was handling them well. They increased the amount from 1.5-3 and he was digesting it all. Dylan started to put on fluid weight because of the kidney function not releasing it out of his body. They have given him blood transfusion to help with the oxygen levels, they have given him platlats to help clot his blood and his blood pressure is very veriable. This is starting to get scarey again. Saturday night we were though comfortable enough to get some sleep at home. So far Dylans nights are better than his days and he is still fighting on, he is such a strong little boy. He continues to let the nurses know what he likes and doesn't like and when he wants to be flipped he will de-stat. He has those nurses wrapped around his finger at such a young age!!

2nd Infection

Dylan came down with another infection today the 26th. The blood culture is showing signs of Grand Negative Bacterial Infection. This is concerning as it can turn into a fungal infection which is not good. So they started him on more medicine, gave him a blood transfusion, more dopamine and a couple of bolis' to see if it would help him go potty. I didn't Kangaroo today and they didn't move him because he was so sick. He didn't move much or open his eyes all day. Dr was honest and told us in the morning he didn't know if Dylan would recover. This is not what I needed to hear. So I called Dylans dad and had him come up and talk tot he doctor after he got off work early. Well by the time Brad came up there, Dylan had started to go potty a little bit and was a little more active. The Dr. was more positive at this time. This was better news than I had heard in the morning. I was still positive as I knew my little boy would get better. The 27th Dylan was going potty more, his kidneys by the numbers looked worse but by the way he was acting that was a positive sign even though the blood work showed otherwise. The 28th when I came into see the little guy he had been awake since 5:30am, he was so alert and just looking around and wouldn't go back to sleep. It was 11 am before he would take a nap, silly little boy. He was definetly feeling better!! So we decided to Kangaroo again today. I was totally fine with it. They were going to change his bed out again during the process. The RT remembered I liked warm blankets so she ran for them once Dylan was on me. Dylan got a sore on his ear from not being able to be moved the other day when he was so sick. So this ear was down on my chest hoping it would help it a little bit. He did a great job and Dylan and Mommy both loved it!! At just 2 hours I had to go potty and they decided to move him back. On the way back RT noticed that something was pulling his tube, the nurse said lets continue on. They moved him back and the RT noticed NO vibration in his chest, this was terrible the vent tube had been extracted. I stepped out to call daddy and when I came back the Dr was in there. They had to replace the vent tube which is not something they like to do. They got it in and Brad and I were angry. The Dr. was angry as he thought that something as far as the checks and balances was not right. He would correct that for the next time we went to Kangaroo, our poor little boy. What he has gone thru and we are only able to help him in spirit...

1st Infection

Saturday the 23rd and Sunday the 24th Dyland started showing signs of his first infection. He was quite a bit less active and he wasn't going potty as much as before. This was a sign his kidneys may be starting to shut down. This is the scariest thing we have gone thru. The blood culture is showing it may be a Staph infection and this is affecting his lungs as well. They had do go up on his vent settings which until this point were very low. They started him on medicine and dopamine to try and get him going potty. Monday the 25th we had a scarey situation with Dylans nurse. But despite the signs of infection we decided to Kangaroo with Dylan again. I was nervous but they thought it would be good for Dylan. We got all situated and about 90 min into Kangarooing he was destating. His oxygen would drop and it heart rate would too. Dr came in and tried to comfort me but the doctor was thinking that something with his vent tube was mechanically wrong. They had to stop the vent and bag him for 15-20 min on me. I was so nervous but trying to be calm for Dylan so he would feel my tension. It knew that he was going to be okay but I was scared. The doctor decided despite the bagging they would put him back into his own bed. During this and after they could look at him better in his own bed they figured out his vent tube had been repositioned. The fixed this and his heart rate and breathing came right back up on their own. I just knew though that Dylan didn't feel good. He was not as active on me and he was not looking around much at all. This was the beginning of a scarey couple of days.

Sept. 21 1st day Kangarooing

Today we had Kerri for a nurse and she asked if I wanted to Kangaroo with Dylan. This is skin to skin care. This would be my first opportunity to hold him! The nurse got me positioned on a cart and she made sure everything was set up before moving Dylan. She got my bed positioned to the right height and moved the IV cart within reach. They were also swapping his bed out while he was on me so they made sure the new bed was ready to be brought in. So it came time to move Dylan onto my chest, it went without a hitch!! All was great and 3 1/2 hours later it was time to move Dylan back. His new bed was ready and the transport process went great. Dylan at one point was at 100% oxygen and only needing 26% support. This was remarkable. He loved his mommy holding him!