Wrapping up a hot summer

It's the last day of August and when you lived in the desert that is a GOOD thing! Summer isn't too bad here really. I equate it to winter in the northwest, meaning there are a few months where outdoor activities are not a good idea. What makes it more tolerable than winter to me is the fact that it is sunny EVERY day! We did get out of the house with Nicolas a few times. Luckily his big sister Allie is his FAVORITE and she is an expert in entertaining him.

She snapped these pics while we were driving around looking at houses

 Nicolas is doing great! He is so amazing. It is hard to describe but it's the most incredible thing seeing him learn and grow. He is cognitively at age level, in other words, his mind works like any typical three year old mind. He has a naughty side. He likes choosing the wrong answer when his teachers/therapists question him on colors or animals, something he obviously knows the answer to! He kind of squints his eyes and chooses the incorrect one as he looks out of the corner of his squinted eyes at them to get a reaction. It's super funny. I just realized he is confusing the gobble gobble of a turkey ...he thinks we are saying gabba gabba, from the children's show "Yo Gabba Gabba" . We wondered why he was making a certain sign after signing turkey during the song he would change his sign to one that looked like jazz hands by his cheeks. I had no clue what he was trying to say as he signed that sign and we sang "with a gobble gobble here, and a gobble gobble there" UNTIL he was choosing a netflix movie and when Yo Gabba Gabba appeared on the screen and I looked at him and he was signing yes yes, and the jazz hands by the face sign. It clicked in my head that he was signing Gabba Gabba for Gobble Gobble... LOL I am not sure I made that clear or not but just trust me it's adorable! ;)

Nicolas playing with the fire truck his
big brother Ollie gave him!

Awareness

Nicolas has changed me forever. I cannot tell you how with mere words and with the limited space here, but I can tell you for sure that he has. 

Mommy's boy

Our little guy is getting so big!  

Sharing with Cookie Monster

                        Love that messy face!

                         Signing mommy :)


                            

Almost TWO ..cute

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

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:)

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!

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

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

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

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

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

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!

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

A trip to the ER

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

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

2 months of late nights and lots of lovin'

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

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

cutest baby in the world!