A Few Prayer Requests

I have some prayer requests for those of you who would like to pray for us!

1) Deklyn has started to have what they call snits, basically a temper tantrum. He gets very up set with the tube going down his throat and decides to clamp down on it so hard that he doesn't get air. He turns a very scary purply/black, they then need to what they call "bag him" which is basically attaching a pump to his tubes to force air into him and if that doesn't work or it is taking to long they have a medication that they spray in his nose that is supposed to get them right out of the 'snit'. He so far has only had one but we would really appreciate prayers that he never has one again, we are told that they are perfectly normal but we would still like him not to have them.

2) On top of that we would also like prayers that his tube doesn't come out again (until its supposed to!) They keep telling us it will happen again, as he gets stronger he could just move his head and it will come out but we are just believing it won't. We don't want him to have to go through that again or us for that matter!

 3) They did an ultrasound of Deklyn's kidneys and praise the Lord they are just fine! He is on a medication that is making him pee alot to get rid of his swelling, but in doing that alot of calcium is being brought through the kidneys which can be unsafe. But while they were doing the ultrasound they found a spot on his liver, so far it hasn't affected anything which is great. They are not sure if the liver got damaged when he was born when they put lines in through his belly button or if its a birth defect. They are not worried about it yet but they need to keep an eye on it. We are just believing and praying that it will be nothing or it will go away.

4) Last one for now! Deklyn is going to need surgery to have a line put in for taking blood, or if he needs any medication it can go through that so they don't always need to poke him with a needle. He needs stuff like that everyday so it is a good idea for a line to be put in. I would just like prayer for peace for Sheridan and I as it is never fun to have your child go through surgery, and of course also for it to go amazingly well and to have no complications. Right now we don't know when this will be taking place but it could really be any day.

Thank you to everyone who's praying and believing with us for Deklyn's healing! This whole situation would be a whole lot harder to go through without all of you! You see a lot of different situations in NICU and this last week we saw one family go through a very tough situation. I saw when their baby came into NICU and I knew this was a serious situation. Their baby got moved to the spot beside Deklyn for a few days so we got to talk with them a little. Their baby had been perfectly fine right up until he was about to be born. He went about 20 minutes without oxygen and that was enough to give him so much brain damage that he really wasn't going to have good quality of life and at that point the plan was to take him of life support. My heart is just broken for them, and I couldn't imagine what that would feel like. I really couldn't believe how strong they were, you really don't have to look far to see someone who's situation is worse than yours.

A Bit of a Scare and A Big Encouragment

It hasn't been to long since my last post but we've had a few pretty crazy events happen since then. We had a pretty scary event happen in the evening on the 25th. Things had been going really well, as I always say and it wasn't any different that day. We've really been getting to do alot of things on our own (diaper changes, moving him from our laps back into his bed, things like that) and that day we were going to weigh him. When he was in his incubator, he could be weighed in that but now that he is in a crib he had to be moved to a weigh scale. So the nurse that night said she would lift him and we needed to just watch that all his wires didn't get tangled and that his tubes stayed straight.

We've done this many times so it felt like no big deal. He was weighed and put back on his bed and I heard Sheridan say something about how he'd never seen him turn that color before, and I went to look at Deklyn and he was very purple and blue. I tried not to freak out because I've learned just to relax and whatever needs to be done will already happen, the nurses and doctors are just amazing! I looked at our nurse for reassurance but didn't really get it, I could tell she was a little bit frantic and that had me very worried because even in scary situations these nurses seem to be just so incredibly calm! Our nurse started calling for people to come help her and before I knew it my baby was surrounded by doctors and nurses I couldn't hear what they were saying, I couldn't see Deklyn or what they were doing to him. I was absolutely terrified. I honestly thought we were going to lose Deklyn. After what felt like hours (it probably wasn't much more than 10 mintues) the excitement died down and they called us over to come look at him. What happened was, while he was being moved the tube going down his throat moved up so he wasn't getting help from the respirator. So they had to give him compressions to keep his heart going and put in a new tube. I felt kind of silly but I just needed to know, so I asked his nurse if he was close to dieing. She said "No, if he had been in a desert yes then he would have died" so basically I took that as, there wasn't a good chance of him dieing because there were people there that knew what to do in a situation like that.

I never want to experiance that again... our nurse told us just to be prepared, as he gets stronger he might even pull the tube out himself, and this could easily happen again. But we are praying that it won't! My heart can't handle seeing that again, that is for sure!
Now how about some good news?? So Deklyn has been getting xrays taken since he was born, mainly they have always just been of his chest cause everytime they put a tube in they have to make sure its going far enough down and not to far, and they've had to check him for collapsed lungs and stuff like that. But the other night our nurse asked a doctor to show us some of his x-rays. The doctors and nurses were just so excited when showing us them which made us even more excited!
Here is an x-ray from from December 27th (almost 1 week from when he started treatment)

You can see his rib cage is terribly narrow, and the ribs are so thin (like spaghetti), you can't see anything in his chin.
Now here is an extra taken on January 25th (over 5 weeks since he started treatment) this xray was taken after the whole tube ordeal to make sure the tube was in right.

 Amazingly, he had no breaks for fractures from the compression and getting the new tube in! You can see his ribs are getting much thicker and you can even see a chin bone and some teeth! Who would have ever thought there would ever be a drug that could make someones bones grow? I for one am just blown away! But of course, we probably shouldn't be to surprised. We knew we had someone looking out for us :) I really can't wait to see the x-rays that are actually taken for the study, we will be able to see so much more from those!
As I always say thank you so much to all of you for all your support! No matter what is, if you feel it was big or small we are so thankful! You will be so blessed for being such a blessing to us!

More Blessings

We've had a few changes since my last post! Yesterday Deklyn was moved into a crib in NICU, he no longer needs the heat an incubator provides and the crib provides easier access to him. We also found out they want us to hold Deklyn once a day, so that was super exciting news! We weren't expecting that to happen for quite sometime! What a huge blessing! Its not exactly like you would hold a baby normally, we first put a nursing pillow on our laps and then him and his special mattress gets put on top of that. It is just so nice to be able to feel closer to him and to see him so content when your holding him makes me feel so good!

Speaking of blessing, we have another person wanting to help us out! You can check her out here:
"Guess What?" I Love You. Boutique She is selling Bobbypin Flowers and 100% of the proceeds she will be donating to Deklyn's Journey. I am just blown away by all the support we've seen. We feel so blessed by all of you who have helped us in anyway at all. Just saying thank you really doesn't feel sufficient.. and the funny thing is, often I find when people are coming to us asking if they can help us in anyway and after I say "Well of course, I can't say no if that is what you feel you want to do!" people are thanking us for letting us them help! So again I will say, from the bottom of our hearts, we are so so thankful to each and everyone of you no matter what you have done. Big or small, we thank you!

Deklyn's main study doctor came by to talk to us the other day and she thinks Deklyn is doing very well. Of course she says it will be a long journey, but he's doing so good this far! I've been kind of concerned about his arms, as far as I know his limbs are the shortest out of all the babies they have seen with HPP. I asked her if she thinks they will grow, because no one has really told me if they would or not. Of course I believed that they would but I wanted to know what she thought. She said that she was sure that they would, she wasn't sure how they'd go about making sure they would end up straight but she was sure they'd grow. That made me very happy to hear! I know its not all about appearance but I didn't want Deklyn going through life being made fun of because he had strange looking arms and legs.

I don't have much else that is new... For those of you who are praying for us, I would like to ask that you pray for patience for Sheridan and I. Right now things have been going quite fast but, as Sheridan goes back to work and will only be here on the weekends and I know for both of us the days will start to feel longer. Some days all I can think about is just putting my little boy in a car seat and taking him home. I want him to meet his cousin, and soon he will be getting a new cousin and I just so badly wish he could be a part of those fun occasions! I know the best place for him is right where he is but sometimes you can't help but wish things were different. We really are hoping and praying that he will be out of the hospital in May, because his auntie and soon to be uncle will be getting married then. It would be very sad for us if he could not be there, if you would like to pray that he be out of the hospital then too we would really appreciate it :)

Happy One Month Deklyn!

Well my little boy is one month old today! I thought that deserved a new blog post :)

If I could say anything about this past month, it would be that it has been amazing and much different then I thought it would be! I thought this whole 'situation' was going to be much harder than it has been. It hasn't been easy, in fact some days are very hard. Just the other day we saw a few families going home with there babies and I began to feel very overwhelmed. I was very happy for them, but at the same time felt very sad that that wasn't me. I just have to remind myself daily that things could be so much worse, we are just so blessed to have our son with us! It feels like this last month has just flown by so fast!
Just to show a bit of his progress here is a picture of Deklyn the day he was born...

and here is one of him today..  (Sorry I know its not great for comparison, for month 2 I will start trying to take a picture more similar to the top picture so its easy to see the changes)

 He has grown so much! From what I can tell, and some nurses have said, his ribs have grown! You can see in the first picture his ribs are very caved in just under the nipples, this has improved greatly! Also his skull was very soft when he was born and now it is really quite hard! When comparing his arms in the pictures it almost seems like his arms have shortened since he was born, but its because his chest has expanded and he's also been dealing with some swelling that his arms are up the way they arm. Some people have been asking me if they think his arms will grow, we really can't say for sure because the drug is still experimental. Deklyn is only the 8th baby to receive the drug so they can't say "90% of the time this happens" or anything like that. They say we can assume that his arms and legs will grow, but there are no promises. Of course we know our little guy will be completely healed, but even if his arms and legs don't make a significant improvement the important thing is that what he needs to live, like his chest, grow!

On Deklyn's 4 Week birthday we had a very special surprise! We didn't think that we would get hold Deklyn for quite some time. I was trying to prepare myself that I may not get to hold him till he is about 4 months old. That evening the night nurse informed us that they would be needing to bring in a new bed for Deklyn and that while they move the beds around one of us could hold him! I was sick with a cold at the time so I told Sheridan he could hold him. I also just felt like I got to hold him in me for 9 months and if it was anyones turn it was daddys. I know it wasn't anything like when you get to hold your baby just when they are born, Sheridan had to stay pretty still, and he had to be held on a small mattress (same kinda of mattress that is in the incubator) so its not like you can actually feel him in your arms, like cuddling him. But it was still something! I really didn't think we would get to do that so soon.

We are so blessed by our little guy everyday! We know its only going to get better!

Deklyn's Doing Awesome :)

Our sweet little Deklyn is doing so well! He's having issues with swelling because he can't move much, and they think it could all of a sudden be a side affect from the drug but its nothing super serious just uncomfortable for him. We are really hoping they can come up with something to fix this issue for him! But really other than that he is just doing amazingly!

You see alot of different situations when you are in NICU, Some babies are very sick and others just need a little help till they are ready to go home. Today we got to see a family who had been there for 2 months take their baby home, that was so nice to see. You see some families who do not know if their baby will make it, and that is very hard to watch. I have not once felt like I didn't know if Deklyn was going to make it and I have never felt like I was watching Deklyn die, but you see some families go through that. I could not even imagine going through that. You see some babies who are sick for reason beyond anyones control, but then you see babies who have issues because of the choices their mom made while she was pregnant and my heart just aches so much more for those babies. Sheridan and I had been talking about how we don't see very many parents in NICU besides us, but we just recently found out that some of the babies are in NICU because their parents were not fit to be parents, and they will be in NICU until they are well enough to be adopted.

I just can't imagine as a parent not being their for your child. I am happy for the babies that they will go to a better home then they would have been in, but as a parent I just don't understand how you wouldn't want to change your life for your child.

I have had some people asking me what exactly is Hypophosphatasia (HPP), and how Deklyn got it. When Sheridan and I found out something was wrong, we met with a genetics doctor who actually guessed that Deklyn had HPP right away. Their was someone in Sheridan's family with HPP so we brought it up as well that it was somewhere in the family. We both got blood taken from us and they measured our alkaline phosphatase (something in your body that tells you to make bones) levels. In most people this level should be 120 if you carry the HPP Gene it will be much lower, for Sheridan and I this was the case. They all sent our blood to be tested for the Gene and it came back that Sheridan and I both carried the most severe gene of HPP. So after that all signs pointed to HPP. We could have done more tests to find out for sure but Sheridan and I both prayed and agreed not to.

You can carry the gene and really have no idea, until two people like Sheridan and I have a baby and get 1 or both of the severe genes. They think because Deklyn's case is so severe and when he was born his Alkaline level was less than 1, he more than likely got both the genes. HPP can really show up at anytime in someones life. When it shows up in a fetus it is considered lethal, but it can also show up in children and adults and can be as simple as having bad teeth or arthritis. The rare and most severe form (what Deklyn has) shows up in 1 in 100,000 born babies.

For what HPP is.. simply, its a rare bone disease that makes the bones not mineralize properly. So they are either very soft, or not even there. There is nothing else wrong with Deklyn, he shouldn't have any problems with learning. He might be off to a slower start with walking and stuff like that just because he has and will be confined to a bed for the first part of his life. It only makes sense that it would take him a bit longer to learn some things.

I hope that has answered some of your questions! Please keep in mind I am obviously not a doctor or nurse! I'm just telling you what I've been told and how I understand it.

I just want to say Thanks again to all of you who have been supporting us in anyway! To all of you who baked or bought baked goods at the bake sale thank you so much! I really feel like saying thank you is just not enough to all that has been done for us, but right now saying thank you is just about all I can do!

So Blessed

wow.... I really have no words. I am absolutely blown away with all the support Sheridan, Deklyn and I have received. From complete strangers contacting me to let me know they are praying for us, people making us meals, people helping us out by giving us some money or gift cards, a bake sale to raise money for us and a friend of ours who bakes cakes & cupcakes helping us raise money by baking cupcakes for people and donating 100% of the proceeds to us... I honestly can not say how blessed I feel. It has been very hard for me to accept all this help from everyone, but I know we need it. and I have to keep reminding myself people wouldn't do these kinds of things unless they really wanted too, but I still find it hard. To all of you who have done absolutely anything in anyway to help us, please know that we are extremely grateful... this journey would be a whole lot harder with out you. All the prayers, encouraging words, meals, gifts.. all of it means so very much to us!

I really don't have a whole lot to update on here with Deklyn. He is really doing so well! Things obviously aren't perfect but we are so very blessed. Everyday we see another reason why... for example just a little while ago someone that is staying at the same place as us came and told us they had lost their baby, I could not believe I had ever felt sorry for myself. There has not been one moment since Deklyns birth that we have even been close to losing him. We've got to see a few families go home as their babies have become well enough to and I just could not be happier for those families, of course I wish it was me at the same time but I know that will come and I need to remind myself that right now this is where Deklyn needs to be! I see mom's holding there babies and it makes me so happy for them that they are able to do that, and also makes me all the more excited for when that time will come for me. We are so blessed by Deklyn, I really think he has made me a better person.

I feel so lucky that I have been chosen to be his mom. I know we are not in for the easiest of times, but I know these little moments like holding him and being able to dress him and give him a bath, I am going to cherish them so much more when I get to do them! Thanks again to all of you for your support, prayers and love! I can not say enough how much it means to us!I have been able to get in touch with some other parents with children with Hypophosphatasia (HPP) and it has been so encouraging. We are actually going to be meeting one of the families this week so I am just so excited to see their little guy and hear their experiences!

I always sang the song healer to Deklyn when I was pregnant with him, and sang it to him yesterday when he was little bit fussy and he calmed down right away. I just love the words..
"You hold my every moment. You calm my raging sea's. You walk with me through fire and heal all my disease. I trust in you, I trust in you. I believe that your my healer, I believe that you are all I need. I believe that your my portion, I believe your more than enough for me. Jesus your all I need."

There Is Always Something To Be Happy About

The last few days have brought some ups and downs for us. Deklyn has still been doing really well, last we left off with doctors saying we had no sign that the drug was working and now they are basically 100% sure it is! We can't physically see it yet but he is getting way more calcium than anyone should and only normal amounts are showing up in his blood and urine so doctors are telling us that from previous experience with the drug and just common sense it only makes sense that it must be going to the bones! So we were of course very excited to hear that!

For the downs.. they really haven't been SO bad. Deklyn has started to cry alot which is really hard to see. I've been able to handle not being able to hold my baby but when he starts to cry I just want to cuddle him and make everything better. The hardest part of him crying is he actually can't make any noise because of the tube going down his throat, so your just looking at a very angry & sad little baby trying to scream as loud as he can but he can't.. as  his mom that is very hard to watch. Today has started off much better already for him crying and being upset. They changed his respirator which they were just guessing that the one he was on was making him uncomfortable but already today he seems to be much more calm and not crying every time he is awake.

We've started to be able to read his cues for what he likes and doesn't like. We can tell when he likes something if it lowers his heart rate and his oxygen level goes up. We've noticed he really likes it when we read him stories.
We've really been learning to just take one day at a time, its so easy to look to months from now and wonder where he will be but its really important to just think about now. What are his improvements for today. One of the doctors came and talked to us and I know she meant well, but started talking about a year or so from now, how he'll probably still be in the hospital and how he'll probably need all kinds of surgery's. How we are not going to be able to hold him for a very long time yet, and how eating is going to be extremely difficult for him because he'll be feeding from a tube for so long. She made me feel very discouraged but I had to remember that we have no idea how this is going to go. Everything she said was a possibility and not what had to happen, and most of these doctors aren't taking into consideration that we have the most amazing God on our side and absolutely anything is possible through him!

Its so easy to think, "Well if God can do anything why didn't he heal our little boy" but the thing is... he is! Its not happening exactly how we hoped it would, but we really don't have anything to complain about. Our little boy is alive, and that wasn't supposed to happen. He's getting stronger everyday, we can feel his skull getting harder. I may not be able to hold him right now, but I know that will come when he is able. I may not get to experience things the way most moms get to but I have the most precious little boy I could ever ask for. Even if I don't get to do things the way most moms get to, I still get to do them. Maybe not right now or if I do get to its with a doctor helping me but honestly I don't care. My little boy is alive and that is something to be happy about!