our precious baby boy

Almost TWO ..cute

2011-07-19T22:14:00.001-07:00

When I started this blog I had no idea what life had in store for us. I guess I still don't. I do know that the little boy who wasn't supposed to live longer than an hour is laying on his playmat demanding more food on his binky! For that, I am so grateful.

Nicolas is the sweetest boy you can imagine... Huge smiles, tons of expressions, super eager to learn sign language... He brings so much joy!

Gtube surgery next week- PLEASE PRAY

2010-11-29T12:34:00.000-08:00

Dec.6th Nicolas is going to have his gtube surgery. He is also going to have his trach upsized as well. I am so nervous. I struggle with fearing the worst.Please pray for Nicolas to do come through all of this ok. Pray for guidance for his medical team. The procedures he is having done are simple but he is complex! Our little guy is so strong. He is such a joy. Pray that I am strong enough to actually take him into the surgery..I want to hide him under my blankets and snuggle with him forever!

Back to Blogging.. and feeling good about it:)

2010-10-30T20:46:00.000-07:00

I am not sure why I stopped writing here. It happened when we went home from the hospital. I think we had so much going on that the blog started getting cobwebs from lack of use. Plus it seemed like no one was following it and I was updating on facebook so my family could just get their updates that way.
Getting out of the hospital was a nightmare. March 17th That was a good day. Having my baby at home again. You don't know how good that feels until you have had a child in a hospital.

Our little Nicolas has done so well at home. He has only had ONE cold since birth PRAISE GOD... I do believe God has protected him from illness. I also know that we have been so diligent about who we expose him to, everyone washing their hands, using sanitizer, not letting him put his hands on out eyes and in our mouths or if he does we wash his hands before he touches his face. I'm not sure if it is a good thing or not but I have become germophobic and the rest of the family is close behind!

I need to go and watch a movie with my family. I will post pictures and write more soon.

37 days and hoping to go home soon!

2010-03-04T20:34:00.000-08:00

We are all super ready to be out of the hospital and get on with our lives at home. Right now this is our home and if you know me at all, you know how I feel about brushing my teeth in a public restroom. I almost gagged writing that. LOL It is so hard, every time I go into there to brush my teeth I try and find a spot that is clean to look at so I wont get sicked out! I can't go in after anyone else because even the slightest smell sets off my gagging. There are only two parent bathrooms on the 4th floor and one of them has a shower in it. It is always full of hair(well not always) and some people dont smell good showering. It's just one of the many things that are hard about not being at home. One of the small sacrifices we make each day along with the other parents, for love of our babies.
Nicolas is doing well. He is gaining weight. He is sprinting off of his vent for up to an hour and a half at a time. He is starting to roll over, and loves playing with his toys. He smiles at the nurses in his mirror we have set up by his crib. What a lifesaver it has been. It opens up his world and allows him to see what is going on and it makes him a lot happier!

The other kids are staying at grandpas. They came and stayed with us at the RMH and we enjoyed that. It gets expensive though eating out every meal with so many people. It is bad enough with just Nick and I. Nick got food poisening and was sicker than ever yesterday. Poor guy!

We are dealing with so much, case management here is a nightmare. We are hoping to be able to go home next week. Will let you know when we finally get home! Love, jenna

hospital update

2010-02-12T18:13:00.000-08:00

We moved to the trach and airway floor 8 days ago. That makes our total hospital stay15 days. Longer than we thought it would be but we are waiting to learn a few more things they want to teach us before we go home. The other issue is that they think that where we are staying is too far from a hospital. It is 54 miles. I told them that we moved 1500 miles to get our son the help that he needed and be able to come home with us on a vent if need be. I left two kids behind, nick left his job, and now we are 20 miles short of being good enough! I also think its a little strange that they would have loved for me to have an abortion, or slowly let him die, but now that we have a trach and vent suddenly they act like they care! I'm sure its more about lawsuits than anything else.We just want our baby P home with us again. To feel like a family again. It feels like forever, and we would love to go home. Another reason they said we cant go home to Florence is that there is no home nursing available there. I made one phone call and found a company that has vent certified nurses looking for work and they work in that area. IT just makes me feel like the hospital didnt try very hard. I try and not be resentful and realize that people are just doing their jobs, but it is hard. Please keep praying for our baby P. He means so much to our family!

PICU - Day 4

2010-01-31T23:44:00.000-08:00

Holding pnut for the first time in 4 days!
Its day 4 in the PICU at Phoenix Children's Hospital. The staff here has been great. Two of our other children were able to come and visit Nicolas for awhile today. Our youngest wasn't allowed in as he is only nine years old and you have to be 12 to visit. Nicolas is doing well. He no longer has the fever that he had immediately after surgery and for about 2 days afterwards. He has gained weight also and that is really good news to us. He weighed 9lbs 3oz before surgery and is now weighing 9lbs 11 oz. They don't want him to gain too much too fast so they will have to adjust his food accordingly. They are giving him 24 calorie formula with added rice to thicken it to help with his reflux. I think it might really be helping as his reflux symptoms have seemed to decrease. He has a swallow study this week and we are consulting with specialists about his spine(kyphosis and scoliosis). It gets so hard to hear the negativity of some doctors. That is one thing I can say about this hospital, we are yet to meet a specialist that gave us the "your kid is probably not going to live" speech. Hopefully that will continue. I mean, we all know that he has campomelic dysplasia and that the odds aren't in his favor. But we also know that there are children living with this condition, not only living, but thriving. They must realize that we didn't relocate our family 1500 miles away to hear negativity, we came here for hope! Well, little sweetie is waking up so I have to go. Please keep praying for us. Prayers that Nicolas wont need surgery for his spine, for protection from infection, for strength and healing for our little guy. Thanks friends! Love, Jenna

We knew it was coming

2010-01-29T20:01:00.001-08:00

We just didn't expect a phone call at 4 pm saying that Nicolas was scheduled for surgery at Phoenix Childrens Hospital the next morning at 8 am. We were a little disappointed that he wasn't able to get into the GI doctor and so he was unable to get his G button in his belly(to replace his ng tube we feed him with now through the nose) I spent the evening trying to get everything together, my clothes and shampoo and stuff that the last time I spent a couple weeks in the hospital I really wish I would have had. Then I got Nicolas's things together and all of the paperwork we needed and in the back of my mind all I could think was... just go hold your baby.. if something goes wrong tomorrow you are going to wish you would have just held him tonight. But when I am nervous I cannot just sit.. I have to do... and the baby was sleeping peacefully in his swing(if you know P you know that is a rarity) By the time I went to bed it was about 2 am, we had to feed him at 3:30 am so he could finish by 4:0t.0 am as he couldn't be fed after that due to surgery, so we set the alarm for 3:30 and snoozed for a bit. Morning came early and we packed our stuff into the car and set off to Phoenix children's Hospital(PCH). We had to leave by 6:00 am in order to get there in time. It was raining really hard as it was the last time we took him to his doc in Phoenix(so much for the dry desert) We arrived on time and jumped through some hoops.

WAVIN BYE BYE

At 10:00 am I handed our little angel baby over to the OR nurse and kissed his head what felt like a million times. I felt like I might never see my sweet P again. He is a high risk anesthesia patient and that worried me. I LOST IT right after I handed him off and cried my way to the waiting room where Nick and I hugged and prayed for our Nicolas. It was almost two hours before we heard anything. Every minute felt like an hour! Finally Dr. Schraff came out and told us that the surgery went fine, they placed the trach, did the bronchoscopy, the other scopes the ENT needed to do, and now he was in having his hearing tested. We were both so relieved that he was doing ok. About half an hour after that we were able to go back and walk beside him as they moved him to the ICU.He looked so cute and pink. They told us they needed to get him set up and that we could go to the family waiting room and wait. We finally got to go back to be with him, when we got there they were taking x rays and he wasn't happy. Seeing him in distress was hard. When a baby is on a vent you cant hear them cry, they open their mouth to scream but no air passes their voicebox so no sound comes out and to me it seems like they are choking and gasping for air. It takes some getting used to and I am still not used to it. He has to be watched constantly because if you aren't looking at him you wouldnt know he was in distress, that is until the alarm sounds on the vent. He pulled it off several times, the alarm is SO LOUD. My nerves were already shot and that was about to put me over the edge! I could go on and on with the events of the night, how Nick and I took turns sleeping and watching him. He had a fever of 102.5 so we were extra worried about him. Today that fever is getting better and is THANK GOD... totally normal the last time we took it. So one day after the surgery we have a little guy that breathes comfortably and that looks so good.

Nick and I suctioned his trach for the first time today! They did an echo on his heart and the cardiologist came by to say that the defect in his heart is small and he doesn't need to be followed at all by a cardiologist. That was a huge relief. Right after that the hospital Chaplain stopped in to introduce himself as he made rounds through the PICU. We feel that God has been present in much of what has gone on here and we are so grateful for that. Prayers have been answered. But, don't stop praying just yet! We have a long road ahead of us. I have to sign off as the nurse wants us to help give him a bath. I am so so so tired and my feet hurt from standing bedside that I am a little hesitant to assist! I will try and keep the blog updated more as we are here in the hospital. Thanks for your prayers!

Gearing up for a long week

2010-01-24T20:56:00.000-08:00

We are enjoying the weekend and getting ready for what will most likely be a long week! I love weekends because of how the medical issues, problems, etc., seem to get put on hold. I have always loved things that COULDN'T be taken care of on Saturday and Sunday. This week we will be calling a few more doctors and getting more opinions regarding little Nicolas. We are going to be dealing with employment, new schools, drivers licences, looking at houses, etc. It is a lot to try to do when you have a little one who needs so much care (not to mention that you only want to be holding and loving on). If you are willing we would love your prayers... pray that we find the best doctors possible for Nicolas and that they would be guided in making the best decisions for him. Pray for us in the decisions we have to make as his parents, this has always been such a hard thing for us as the decisions we are faced with feel impossible to make. We always ask you to believe with us that he would be healed and still believe he will be. Pray for our other kids to adjust well and that we would be able to be there for them as they need us. Thanks for following our blog, I will post some more pictures soon! Love you all... Jenna

Life changes

2010-01-21T19:37:00.000-08:00

All of our kiddos at Christmas

I have been meaning to write here, my little corner of the web, and update all of you on peanut but I keep putting it off for a few reasons. We have been told that baby Nicolas needs a trach and will most likely be on a vent for some time afterwards. No one knows how long, only that without it he will not thrive and will likely not survive. But to bring him home from the hospital we would have to live in an area that could support a home "vent" system, our area is not able to provide the service. We also know that Nicolas will need a team of specialists to deal with his other medical needs if, God willing, he makes it to that point. I am still not ready to talk about what happened, to my heart, as I had to decide to move and save my son, even though it meant I would have to leave another son behind with his dad. I wrote this out a few times and went into way too many details and I didn't want my son to read it(now or ever) and feel bad. I will just say that he was all ready to move with us and at the last minute he was "talked into" not moving. He had already felt so torn and then this was done to him. I don't want him to feel bad or be sad or feel he has to make anyone "happy"... that isn't his burden to bear... so I decided that in faith I would move, and pray that one day my other son will decide to change his mind and join our family here. I didn't know how I could stay and let my baby die, and I still don't know how I pulled out of town without one of my babies!

Allie and Nicolas

Tim and Nicolas

OK I cant write about that anymore... please just pray for all of us. P is doing ok, he saw two doctors today... a pulmonologist and an ENT... the pulmonologist said that he thought Nicolas was ready for a trach based on the history he read from seattle, the ENT said maybe not, maybe he won't need it. I am pretty sure, unfortunately, that he will need it but think that a reevaluation of the whole situation won't be a bad thing. I will know more in a few days and will update the blog again.. I just had to get past this post....

My four boys....

Happy 4 month bday!

2009-12-13T23:31:00.001-08:00

Four months I thought we didn't have. Thank you GOD! Nicolas is such a sweet boy and we are so in love with the gift you gave us. We realize he is here for your glory and pray that we all represent you in a way that pleases you. Any child is merely on loan from you and that is how we view our journey with our little "P".

We made it safely to Seattle, having a baby that doesn't tolerate a car seat or car bed without screaming(which leads to blue spells) and driving on icy wintery roads for ten hours was a bit much on my nerves. We arrived in one piece and checked in to our hotel. It was kinda fun in a way to have our little guy in a motel. I know it sounds crazy, but we don't get to do a lot of normal things other families do. I mean, we don't even take him to the grocery store! We went to our appointments with the craniofacial clinic and skeletal dysplasia clinic. They did an ultasound on his hips and found what we already suspected, his right hip is dislocated. It is something that shouldn't be causing him pain right now and it doesnt need to be fixed at this point. Fixing it will require surgery and opening the joint and putting the ball part in. Our day ended with another appointment in the craniofacial clinic. He was concerened that Nicolas was retracting pretty hard and that his carbon dioxide levels were still up and said that the pulmonoligist might decide to admit him to the hospital at his appointment the next day. We were of course dissapointed.
That night we took "p" for a drive around Seattle, they have really pretty lights up and the city seemed really festive. We stopped at a Kmart for supplies and got to try Nicolas in his new stroller. Again, we don't usually even take him in stores and it felt good to feel normal if only for a few minutes. We thought he might want to see the space needle, especially since it might be his last night out of a hospital for awhile!

We both dreaded the next days appointment with the pulmonologist. We got to the hospital a few minutes early and Nick went to get us both iced coffees, we had to get Nicolas' blood drawn and then it was time to talk to the DR. She was concerned for Nicolas for the same reasons the other doctors were but said that he didn't need to be admitted right away. That was a relief. It wasn't a relief however to hear that she thought that if we wanted him to thrive a tracheotomy was needed. It is also a possibility that he will need a ventilator to help his lungs function. This wasn't a total suprise to us as we talk with other parents who have children with CD. Most of them need a trach at some point and even the help of the vent until their airways strengthen. We want our little boy to be comfortable while he is here with us on earth and we are hoping this will allow him to focus on growing stronger instead of using all of energy just to breathe. So after many tears and questions we agreed that the first week of Jan. we would travel back to Seattle and have the surgery done. They have told us it will be a 6 week to 3 month hospital stay. Nick and I will both have to learn to do his trach care and we will need to have home nursing. We are also waiting to find out if there is even anyone in our area that can set up a home vent. If those things cant be lined up we wont be able to come home. This has led us to seriously consider moving and we have narrowed it down to seattle or phoenix. We need to be around bigger and better healthcare facilities for Nicolas. This has been hard on the other children who liked the idea of moving until we told them that we finally were going to do it!

I want to write more, but it is 1 am and I need to feed Nicolas and get to sleep. I do the 1 am feeding and Nick does the 4 am feeding since he is up getting ready for work. If I am lucky the baby sleeps through it, if not, I end up having to get up at 4 am too!

Please just pray for all of us, especially our sweet little Nicolas. He is such a huge part of our family now and we really still believe he can be healed.

closeup

2009-12-01T14:21:00.000-08:00

A trip to the ER

2009-11-25T07:12:00.001-08:00

Nicolas gave us quite a scare on Saturday night. It started as one of his usual scary fits that I have been talking about and progressed into a fit that wouldn't stop, and Nicholas going way to long without being able to move any air. We wrapped him up in blankets and rushed to the ER. It is the worst feeling in the world seeing your baby gasp for air and not be able to breathe. His eyes bulged and look frightened, he turned a grayish color, and was sweating profusely. By the time we reached the ER he was able to breathe again but was still retracting super hard and really working to breathe. The Doctors looked at him but couldn't really do anything for him. Our ER doesn't seem prepared for our tiny little patient. They were unable to get an accurate pulse ox on him the entire time. We didn't bring feeding supplies and had to rig something up to be able to feed him through his ng tube. It is obvious that we need to be closer to a children's hospital but Nick has been unable to find work in the areas we have looked. He took Monday and Tuesday off of work to help me with Nicolas in case of another episode. Unfortunately he had to go back to work this morning :( and of course.. you guessed it.. another episode. Thank God it didn't get as bad as the one that landed us in the ER, but it wasn't fun. The one today seemed to be related to him pooping his diaper. He isn't constipated but he has trouble actually pushing his poops out. The doctor said it has to do with lung capacity and not being able to push or something like that. He takes miralax daily to help him with that.

There is a great group of people I have met online who have children with CD like Nicolas. There are survivors, which gives us hope. It is really nice to be able to chat with them about medical issues and all of the challenges that go along with the diagnosis.

Our other children are doing well. Their Thanksgiving break starts today so they are happy to not have school for 5 days. Oliver is super excited for Thanksgiving, he loves holidays. He keeps saying " Thanksgiving is tomorrow right" lol...

I better go back to sleep while baby Nicolas is sleeping as I haven't slept much at all lately and am feeling run down. Oh and our church did the nicest thing for us, I will write about it tomorrow...

Three months old! update and pics

2009-11-15T10:39:00.000-08:00

I have been stuck with the nickname of "P"!Short for peanut, I think it's because when everyone was saying how cute "Nicolas" is my dad thought they were talking about him!

Me and my mom

I cannot believe little Nicolas is three months old!!! He is starting to smile a lot and "talk" to us. It is so adorable when he gets happy because his little legs kick and his arms swing around. It's hard to say how he is doing health wise. He seems to be retracting more when he breathes, but his carbon dioxide levels haven't increased. He still cries a lot. Most of my time is spent trying to soothe him and once i finally get him to sleep i dont dare get up because if i do he wakes up and starts crying again and we have to start the process over again. I try and enjoy his little cuteness snuggled on my chest sleeping but it gets hard after awhile(8 hours) because i know there are so many things i should be doing. The only time my family gets a good hot meal is when my mother, who already has three jobs, cooks for us in her "spare" time! She is such a good cook and we all cheer when we see grannie pulling in the driveway. She brought us a wonderful meal last night, I had no idea she was coming until she walked into my bedroom, what's funny is Oliver was right behind her with a bowl of her beef stew already, saying how good it was. He must have been hungry! ;-) Our church was wonderful bringing meals for the fist couple of weeks too, my kids loved those ladies! When I do get a few moments free i try and comb my hair, wash bottles, pump, and straighten the house. I know that little pnut is the important thing right now but i also know i need to try and retain somewhat of a normal life for the other children. We have had to consider Nick quitting his job to stay home and help me. Financially that would be a nightmare but I am not sure how long I can do it on my own. As the crying spells are getting worse and the turning purple happening more frequently, it gets to be too much. It sure is nice when the weekend comes and there are two of us, even then we find there aren't enough hands and time to do what needs done.

We are scheduled to go to Seattle Dec. 8 and 9. I am getting a little nervous about traveling 10 hours with Nicolas. His crying fits are so scary and often lead to him turning purple and struggling for air. I have had to weigh the benefits of going against the cons and there is no good answer. It will be a horrible feeling being hours from anywhere with a baby in this condition. All we can do is pray that nothing tragic happens. The doctors feel that is is important he is seen there to see how he is doing.

We celebrated his 3 month birthday with a cake and new binkys! Please keep praying for his health and believing with us that he will be healed. Pray for wisdom for us, and peace. Pray for our other children who are dealing with the sadness of this as well as with us being consumed by the baby. Pray Nick would be able to find a job in Seattle or Phoenix, or anywhere that isn't ten hours away from a childrens hospital!

Thanks for checking in with us!! Love, Jenna

handsome boy

2009-10-21T17:30:00.000-07:00

2 months of late nights and lots of lovin'

2009-10-16T17:04:00.000-07:00

This looks like a smile to me!! He is so much cuter than his pictures but I thought this one was cute!I cant believe that our little Nicolas has lived for 2 months! We feel so blessed to have had this time with him.. We of course pray that we will have a lot more time with him! It's an interesting thing having a child that isn't expected to live. From the time he was born I wanted to hold him every second as we were told he would most likely live for only an hour. I never wanted to put him down. The first few nights I just held him all night. When we realized he wasn't going to die immediately I started realizing I would have to sleep at some point and would put him down for a few hours at night so I could sleep. I am still in that mode, I put him down at night because I have to sleep. Other than that I hold him almost constantly. It is obvious by how messy the house is getting and how empty our fridge is! I can't take him out because we don't want him exposed to anything that might harm him( swine flu, colds, etc.) We do have to take him to the nicu twice a week for weight checks. I don't go by myself because it is a lot to haul, him in his carbed, the oxygen, the oximeter, the diaper bag... so I usually wait until Nick is off work and we go together. Lately our little peanut has been quite crabby. We think it is due to reflux. It's sad because he gets all congested and starts having a hard time catching his breath. He arches his back and screams! Right now our nine year old is holding the baby... thanks Oliver.. it gives me the time to get on here and do a quick post! I better go, thanks to those of you that have commented, I want to write back to you but have not had the time. Take care all... Lots of love....Jenna

peanut and kids

2009-10-15T17:43:00.000-07:00

Our family a few hours after Nicolas was born. The kids were all so happy to meet their brother.

cutest baby in the world!

2009-10-12T19:06:00.000-07:00

I smiled at mom today!!!!

2009-10-08T12:25:00.000-07:00

Just wanted to post an update on Nicolas. He is home from Seattle and we are loving having him at home. The flight home was scary because his o2 sats dropped way into the 70's and we had to get oxygen from the flight attendants. Luckily that brought his levels back up but ever since we have been home he has needed the oxygen. We think maybe he misses being at sea level in seattle! He has times where he seems comfortable and content and other times he has crying fits and his 02 levels drop, he gets to where he can't breathe, and just when we think we should call 911 he quits and slowly becomes himself again. The doctors are thinking part of it may be his reflux. We have been told that he will most likely get a cold this winter or the flu and he will most likely not make it through that. Living everyday scared that this episode could be the one that is too much for his body to handle, is tough on all of us. We are all just trying to love little Nicolas as much as we can and hope that God will give us strength if he doesn't make it. I am so comforted to know that if he doesn't make it he will be in heaven and he will be in perfect healthy peace! He has a cousin in heaven who would be 21 today! We still pray that God will heal him and carry him through so we can watch him grow up. Please pray for him. Pray for lung capacity and that his airway would be open and strong. He keeps me super busy but I will try and post some pics when I get the time. Oh and yes, he smiled at me today and I was so happy that I started crying and i think i scared him cause a few seconds later he started to cry! oops!

God's little miracle Nicolas was born 08/14/09!!

2009-08-16T19:12:00.001-07:00

We are so blessed and enjoying every minute God gives us with our very own miracle! Born Friday 8/14/09 at 38 and a half weeks via c section... Nicolas Lee Hood is nothing short of a complete miracle. He is now over 48 hours old. We are unsure of his future and continue to place that in God's mighty hands. What we do know is that in his first two days he has been weaned off of his oxygen and has excellent oxygen saturation ... usually his monitor stays between 95 and 100..which is so amazing. I will post more about his birth and more pics as time allows. Right now I am going to scoop him back into my arms and love him up. Please pray that he will continue to have a strong airway and that God keeps His hand on all of us. PRAISE GOD .. He has granted us so much more time already than the Drs predicted.

meeting with neonatologist today

2009-07-30T11:15:00.000-07:00

Today at 3:30 we meet with the neonatologist at the hospital to talk about how much intervention we want, how hard we want them to try and save our little guy. We have already decided that there is going to be minimal monitoring during my labor. Thats as far as we have decided. Please pray for us. I really dont have the strength to go to this appointment and talk about my baby dying but I have no choice. I know that having him on a ventilator could mean months and months of him in the NICU. The last baby i was reading about with this condition was in the NICU for seven months and is finally coming home with nursing support. I feel right now that I couldn't handle that and part of me will be at peace i think if he just goes into God's arms where I KNOW he wouldn't suffer. But I am SO emotionally exhausted I shouldn't be making the decision of what we have for dinner, let alone for life and death. I have been in constant prayer about this and the only thing I have heard is to trust God and that is what I am going to do. I trust that if our baby dies that God will comfort us and that He will bring forth good from a situation that seems so bad. If our son lives and is in the hospital for months on end and is as disabled as they say he will be, our Mighty God will then give us comfort and strength and use our babys life and our story for His Glory! If our baby is healed and somehow gets to come home God's work will be evident to the world and hope will be renewed. My prayer for today is that God speak through the neonatologist today and through Nick and I. That we can sit there but when our mouths are opened ... God Speaks His Will... Have you listened to the Casting Crowns song... I will Praise You In This Storm???? It brings me to my knees... I LOVE it so much.. I think I want to put it on my zune to listen to during labor. I will close this post with the lyrics to that song...

Praise You In This Storm lyrics

I was sure by now
That You would have reached down
And wiped our tears away
Stepped in and saved the day
But once again, I say "Amen", and it's still raining

As the thunder rolls
I barely hear Your whisper through the rain
"I'm with you"
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away

I'll praise You in this storm
And I will lift my hands
For You are who You are
No matter where I am
Every tear I've cried
You hold in Your hand
You never left my side
And though my heart is torn
I will praise You in this storm

I remember when
I stumbled in the wind
You heard my cry
You raised me up again
My strength is almost gone
How can I carry on
If I can't find You

As the thunder rolls
I barely hear You whisper through the rain
"I'm with you"
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away

I lift my eyes unto the hills
Where does my help come from?
My help comes from the Lord
The Maker of Heaven and Earth
-------------------

I love you all.. thanks for being with us through our storm... Jenna

Keep Prayin!

2009-07-19T21:50:00.000-07:00

As we get closer to our due date I am so anxious. I am trying to enjoy the time I have with our little guy. He is so active I would never in a million years think anything could be wrong with him. I pray for healing every day and know that it is possible. I also try and prepare for the possibility of him not living. I read other bogs of other women going through this and I feel like a total wimp compared to them. I cry myself to sleep each night. My husband works early in the AM so I wait until he is asleep and I cry my lil eyes out! I am so thankful for my other children, my youngest is eight and he keeps me busy and I love that! I have been skipping a few doctors appointments, in a denial of sorts, or just wanting to feel "normal". Please continue to pray for a miracle.. knowing that God is fully capable.. please believe that with us.. we pray that his airway grows and is perfect and he is able to breathe on his own when he is born.. Thank you so much for those of you that are praying with us and believing! I will try and post more updates as his due date nears. He isn't due until the end of August (aug 24)but have a feeling he will be born sooner than that.

Test Results

2009-05-29T08:03:00.000-07:00

First of all I want to apologize to those of you that will have to hear this news here. I just don't have the strength to make calls or talk to anyone. Our test results came back and our baby has a lethal skeletal dysplasia. Campomelic Dysplasia, One of the ones I dreaded and feared but was sure that God wouldn't allow. We are told we will have minutes and possibly days at best with him after birth. My heart is so broken as is Nicks and the childrens. I still have 3 months of pregnancy and fear others comments like when are you due? What are you having? I dread my doctors appointments where I used to walk in with such joy, where I would sit and look at pregnancy magazines and make plans and dream about my child's life. I am afraid to go to my ultrasound and fall in love with him even more as he looks so perfect swimming in my womb, I fear most of all giving birth to my baby and having to say goodbye to him. I fear never being the same again. Please forgive me/us if we hibernate for awhile.

the tests can't be started until we get the ok from your insurance

2009-05-13T11:15:00.000-07:00

I am so frustrated today. I just called Johns Hopkins to check on the tests they are performing on our lil guy. I almost fell off my chair when she said " the tests can't be started until we get the ok from your insurance." You see, that's why I hate making any calls. They never bring good news anymore. Nick was sensible about it when I told him and reminded me that the test outcome isn't that important. We are going to carry the baby to term and trust that God's will be done. I just long for hope. Some days I have so little to begin with and then things like this feel like a major setback. Even if the tests are negative for the lethal forms of skeletal dysplasia they are testing for, there are many other lethal and non lethal forms that they aren't testing for. I feel like driving to Johns Hopkins and slapping cash down and saying "now please start the testing!" Howwever, my car isn't in great shape, I have no idea where John Hopkins is, and I don't have the money.. LOL How's that for being helpless. I think there must be some grateness in being totally helpless. I know there is, I just can't feel it right now ;-) thanks for reading and I feel a little better after venting!

A mother's day

2009-05-11T07:35:00.000-07:00

Yesterday was Mothers Day. Mothering runs deep in my veins as I am sure it does for many women. When my children were small I felt like such a good parent. I received many compliments on how my children were so well behaved, and I got really comfortable with my status as a good mom. As my kids get older I realize I am not the perfect parent, and there is nothing that can prepare you for when your sweet and loving babies turn into cell phone junkies declaring their right to privacy. Upon waking yesterday I heard rustling in the kitchen. Being the good mother that I am and not wanting to ruin any suprise of a pancake breakfast in bed, I stayed in bed and waited. Laying in bed waiting for the smell of pancakes to start swirling in from down the hall I started thinking about our unborn baby boy, mainly if this would be the only mothers day he would spend with us. I really hate it when I think like that but I haven't totally figured out how not to. Tears were soaking my pillow and my thoughts turned to my older children, we have been dealing with a lot of disrespect issues and other behavior issues. Mother's day... the words kept running through my mind. It used to be a day that felt well deserved. Now it feels more like a day of mourning, failures, and fears. In no way do I mean my children are failures, it's me I wonder about. It's hard when you are involved in a massive pity party to look outside of yourself, but I also thought about all of the women who are unable to have children, or have children that have passed away, or that are grown and long gone. I soaked my pillow a little more for them. By this point I was wondering why the pancakes weren't saturating my bedroom with their sweetness. I wondered if they had switched to eggs, they know i don't care for eggs, but they also probably know I would dutifully eat them with a smile and gratefulness. About then a teenager popped into my room with a cup of coffee that was quickly slipped on my nightstand and in a blink she was gone. The coffee was wonderful, and each sip brought me a little bit further out of my pity party. My husband came down and chatted with me for a few minutes and that conversation revealed that there wasn't any breakfast coming. The kids had thought about it and even started getting out supplies, but no one could decide who was going to cook, so no one did. It didn't matter. I truthfully wasn't that hungry, and the coffee had tasted better than normal. I made a choice to be happy with what I had. My husband, my children, my unborn baby with who knows how many problems, my less than neat house, and my less than dry pillow. I have been praying for the strength to embrace my life as it is, my husband as he is, my children as they are, especially peanut, to not fear his life or lack there of, but to love each moment that he is alive inside of me. So as I arose out of bed I took God's word and promises with me in my heart. The living room held all of my children and I felt such a love for each and every one of them and if God loves me anywhere near how much I love them, then I know I have nothing to fear.

Another Ultrasound and a dose of hope...

2009-05-05T17:03:00.001-07:00

TODAY we went to yet another ultrasound with the perinatologist from Missoula. I had mixed feelings about this appointment, excitement and fear ranked toward the top. Amazingly Nick was off work on time to make it to the appointment, Tuesdays are typically long hard days for him. We drove to the labor and delivery department at KRH and walked in the same doors you usually only go through to take the final steps in bringing your baby into the world. We were told to wait in the waiting room and our doctor would be out shortly. The waiting room walls were covered in perfect portraits of perfect babies and without saying a word to eachother, we knew, we knew the other was crying out for our baby to be like those, not even for us, but for him. A woman walked in looking like she was in labor, others came in with big smiles and teddy bears to greet the new additions to their world. We tried to smile at them and for them, but our insides were being turned inside out with fears for our baby boy. FINALLY the doctor came and got us and lead us into a room and told me to go ahead and get on the table. He started the scan and it was only seconds before our sweet little boys face appeared on the screen, so clear and perfect to us. I asked if it was 3d because it looked like a pudgy little baby face. He said it wasn't 3d, just a good shot! During the last ultrasound one of the doctors concerns was his mouth didn't appear able to close, it was always open, well these little lips were closed and looked perfect to us. (maybe we are partial, who knows) The dr then scanned more, measuring the baby's head, which measured right on track. Then to the most important... the chest measurement... it was perfect! The heart was also perfect size and a good ratio to his chest. A lot of times with the lethal skeletal dysplasias the heart takes way over it's share of the chest. This was the measurement I had been praying for and God has been so faithful. The ribs looked good, and really everything was near perfect until he got to the legs. Poor lil peanut, one of his femurs is quite bent, and both femurs measure short still, BUT they have both grown a lot since our last ultraound. It's a good sign that they are continuing to grow. The lower legs are worse than the upper legs in growth and are even further behind. BUT they HAVE grown since the last ultraound as well. The arms look better than the legs, the upper arms again are better than the forearms, but he is growing and his arms look to have good movement. He opens and closes his little hands and moves them about freely. His feet still appear to be clubbed, but this is something that they can fix. At the last u/s the dr was concerned about the babies pinkies being curled in and this time they appeared perfectly normal. Another answer to prayer! I have been praying so much for specific healings and can't help but rejoice in that they have happened. We are so GRATEFUL to all of you that have prayed for our baby. GOD IS LISTENING!!! So you cannot stop now. Please keep praying for his legs to grow and straighten! The same for his arms! Pray for continued growth of his chest too. We accept our baby and will love him just as God gives him to us, we just want him to live, and if we are granted that, we want him to be comfortable and happy. Thank you Jesus for the work you are doing in our lives even now. Today I got the only mothers day present I need. HOPE. Hope for our babies life. The doctor even said, he looks like a normal baby, except for his arms and legs. That may not sound like much to you, but to me, that was BEAUTIFUL! He said that it's hard to say but things are pointing towards a non-lethal dysplasia. There are still a few test results we are waiting for. They will be another two weeks. Ughh! They are also going to cost 1500.00 ! We are hoping the insurance will cover a portion of it, the dr said they probably won't want to, but he will write a letter indicating the need for the tests and that might help to get them to pay. THANK YOU ALL FOR PRAYING... PLEASE CONTINUE.... GOD IS AT WORK AND YOU ARE A PART OF THIS MIRACLE.

chromosome results

2009-04-28T12:47:00.000-07:00

We got a call from our perinatologist and the chromosome results (for downs syndrome, Trisomy 18, etc.) are negative. We praise God for these results as there was mention of him having both skeletal and chromosome problems. We are still waiting on the results from the other part of the test. Any day now we will be finding out if our baby has a lethal diagnosis. Every day seems so long, and I pray that when we do get the call we hear good results. We are praying for our babys life. For a miracle.

the amnio decision

2009-04-28T11:59:00.000-07:00

We were offered an amniocentesis to help us figure out a more exact diagnosis for our baby. In the past I never would have considered an amnio. There is a risk of miscarriage with the procedure, however with an experienced dr. using u/s guidance the risk goes down. I needed answers. I am so pro life, but wondered if it was even humane to bring a baby into this harsh world with so many physical disabilities, the doc said he will most likely never walk and might have limited use of his hands. There might be mental retardation. I started feeling so guilty for even thinking this way. I know that this experience is helping me to be way less judgemental about others. I didnt think i was judgemental before.. Lord God please forgive me for the times I have judged someone when I had no idea what they had been through. OK, so i went ahead with the amnio and it wasnt horrible. My huband had to work so I was going to have to go alone, but my son timmy who is 14 offered to come along. I was leary to let him as I wasnt feeling like dealing with normal selfish teenager for a two hour trip to missoula where i knew he would then want to go shopping because he had been saying how he really needed pants...etc. He said " I wont be like that mom" so I believed him and off we went to Missoula! Tim waited in the car for me so i had to walk into that building, the one where they told us just how many problems our son would have, the one with the long hallway of doom... but I did it! It went fairly quick, there was a dr visiting from salt lake and he scanned the baby and then took me into the office to discuss things. He seemed more optimistic about our baby, or maybe it was just that he knew he wouldn't be directly involved as he was just visiting, but his optimism gave me something that i hadn't had in awhile... hope. He measured the chest of the baby and said that that was a really good sign as a lot of the skeletal dysplasias are lethal due to breathing problems due to the chest being so small. We left the apt. and i let Tim drive, he has a learners licence, and he drove us to the mall( i told him to)and when we got there i suddenly felt sick and vomited in the parking lot. We shopped for a little bit and got Tim his jeans, and then we headed for Kalispell. I let Tim drive all the way home and he did great! I was so proud of him. He was sweet the entire time and even when we were going to the mall and I got sick he said "mom, we should just go home".

20 week ultrasound!

2009-04-28T11:02:00.000-07:00

It seemed like this day would never come, and here it was! The day we would find out if we were having a little girl or boy. We had a shopping trip planned for that weekend in Spokane, which is about five hours away, so we could indulge in pink or blue to our hearts content. We took two of our boys with us and they were equally excited to find out if they were getting a sister to protect, or a brother to teach their mischievous ways to. The ultrasound tech started the scan and it wasnt long before even our untrained eyes could see that we would be shopping in the little boys department that weekend! The scan progressed without much comment from the tech. Nick held my hand as we watched our little guy move around. We exchanged smiles and hand squeezes as the tech went on to measure the legs and feet... It wasn't long before the tech said "ok you are done" I asked for the dvd we were told we would be getting and she said "oh...... well these pictures are just as good." Oliver, our eight year old, tried to talk her into going back in and making a dvd but she hurried off. We were a little upset, but we left the appointment content knowing our baby was indeed a boy, and seemed to us to be healthy! The day after the U/S I recieved a call from our midwife saying I needed to call her. My heart dropped, it suddenly hit me why the u/s tech wasn't chatty, and why she didn't give us a dvd... could something be wrong with our baby?? I tried to call her back immediately and she was in with a patient. I was assured she would call back shortly. After an hour without a call I decided to try back and she was at lunch.. I asked if someone could just look at my chart and see what she was calling for, after a minute or so the nurse got on the phone and said that she didn't see that the u/s results were back yet and the only note in my file was about my heart(which is another story) and told me that as soon as the midwife was back she would call. She finally called and said that the radiologist from the hospital had called her and thought we should see a perinatoligist due to the baby's legs appearing shorter than they should be and the feet looked "turned in" . I immediately called Nick and together we talked ourselves into the hope that it was nothing. We made an appointment to see the Perinatolist in Missoula that Friday. We started browsing the internet and trying to understand what might be possibly wrong with our baby. Friday came and as soon as Nick was off work we headed to Missoula. It is a two hour drive to missoula, but the trip there seemed as if it took forever. We prayed, listened to the radio, tried o fill the silence with smalltalk... and finally we made it safel to the medical office where we would be getting a level 2 u/s. We walked up to the third floor and turned to see a long narrow hallway. It felt like a halway of judgement.. what would we find out.. the stress was about to be too much. Inside the receptionist was super friendly and I had to fill out some paperwork. Then we sat and waited for them to call us back. Stuart Little was playing on a tv in the waiting room and we watched it in desperation for something to take our minds off of what was happening. Eventually we went back and a very friendly tech started our u/s. She let us listen to his heart, and we sat and watched her take many measurements of our little boy. She then went out and got the Dr. and he came in to finish the scan. He took more measurements and we would see that our baby's bones are at least 2 weeks behind in growth. He promises to talk to us about all of his findings in his office as soon as he is done scanning. He showed Nick and I into his office and he stepped out for a minute. That's when Nick and I both lost it. We clung to eachother, we had seen the bent bones, the dates that were even worse than we initially thought. The Dr came in and went on to discuss the baby's problems. He said that the baby had bent femurs and how short all of his long bones were measuring. He also said that the baby's pinkies seemed to be curved and turned in. He said that the baby appeared to have microganthia, meaning a very small chin, and he wasnt sure if the baby could close his mouth. He also said that the baby has pretty bad clubfeet. The window in the office was closed but I remember wondering if I jumped out of it if I would die. My heart was breaking at every word the Dr spoke. He told us that we could terminate the pregnancy or carry it to term. He thinks it might have skeletal dysplasia, some are lethal, some not. Or he might have Osteogenesis Imperfecta, some types lethal and some not. We might be able to deliver him in our hometown, Kalispell, or may have to go to missoula or spokane depending on if the neonatoligist in Kalispell would be comfortable with him being born there. Nick stayed fairly composed, but i cried as i listened to ths dr. tell us the grim future of our baby boy. He asked us if we had any questions and i said i just needed to go home. Once out in the hallway Nick and I clung together and cried for our poor little baby. I cried most of the two hours home. Sobbing, and fealing a gnawing dreadful pain overtake my soul. I cried out to God and wondered if he had heard all of the prayers we had prayed. We made it home and broke the news to our children. They cried with us. Nick and I were numb and went to bed early.

Two pink lines

2009-04-28T10:50:00.000-07:00

Thanks for stopping by. I am not sure where to start so I guess I will start with the day we found out we were pregnant with our little peanut. Nick and I were both overjoyed when a pregnancy test confirmed what I had felt, we were pregnant. Of course part of me couldn't believe it so we ran to the dollar store and bought three more tests. I had to use the bathroom so bad, but didn't want to because I wanted to take another test! We finally made it home and i took the second test and it again was positive. We were both happy and started dreaming of adding a new blessing to our family. It wasnt long until I started getting morning (all day) sickness and was suffering from extreme exhaustion. I spent a lot of time in bed and used what little energy I had to clean up the house and get the shopping done. It was not fun at all but I knew that it would be well worth it when I finally got to hold our baby.