Making strides..

Samuel continues to work hard and strive to grow stronger each day.
He rolled over from tummy to back twice on thursday during his PT!!

Samuel has been very busy with his therapy and lots of tummy time. Having the extra moniter on now has made that more tricky as it often gets in the way. I have continued to try to get him drinking some water orally with techniques from his speech therapy. Here is a picture of him working with his therapist on some water by syringe. He has become far less adversive and has a multi swallow but not really coordinating with a suck reflex so I am beginning to think we may be bypassing the bottle and going straight to cup.

One thing I am quickly realizing about myself lately is that I am finding it increasingly harder to concentrate on the normal daily stuff..I am just so deeply engrossed in Sam's daily needs and steps. I stay up late at night either worrying about if he is resting ok or I am online researching more related health articles etc.. Then during the day it seems far more important to bond with Sam and try to make whatever progress we can during his wake periods than to be doing stuff that is piling up on my to do list.. I blink and the days are flying by..I can't even remember the opposite feeling of watching a clock bored..well then again when do you ever have extra time once you have multiple kids? I am trying to squeeze in enough time with Bella one on one as well as she is in that Kindergarten learning to read mode and is actually eager to work on it together.

I can't believe how old he is because I feel like we were deprived of so much in those early months and I want to make it back up now but real life with 3 kids is already demanding as it is... no time to go back. Here are pics of Sam and the girls today. The girls put on puppet shows and entertained Sam. It was not our most productive day but it was a proper and much needed day of rest. 

Thank you Lord for the love among these siblings and for good family times

that lighten the weight of our worries for Sam. He is making such amazing strides to grow stronger and we just have to encourage him and have faith that he would not have had to go through this if

not to make us all better and stronger. 

Messages to his heart?

This will be a long post. I can feel it..need to get thoughts out of my head.. it is just crammed tonight.

We had an appointment with Cardiology today in Pensacola and they did another echo and we had a chance to try to discuss completely ruling out any concerns about his heart being related to his bradys. We had left Shands with the understanding that his Tracheomalacia diagnosis (TM = soft cartilage) was causing obstructive apnea leading to bradys (dangerously low HRs) and low oxygen saturation levels. Since last posting, we had another bradycardic event on Tuesday night which was not the rigored kind..nor blue color changes. He was sleeping and it was going off and HRs then just stayed low 70s when he usually sleeps at 120 -140. He has both kinds and they are distinctly different in nature. We just have long wondered why if it is obstructive apnea would the apnea alarm never alarm before or at any time during his episodes? So we put together a list of all our questions for our cardiology followup appt. today in Pensacola.

Well.. this appt was good in some ways in that the Dr was able to clarify alot of our questions but it also reopened the door on ones we thought were already answered. He seems to have the opinion that the origen of  Sam's bradys is more likely to be central in nature or a product of undiagnosed seizure activity in the center of the brain controling breathing and HR. It makes me feel more questionable about what we thought was his diagnosis for the Bradys..the TM. I so want to have all our strings tied up in little bows and have all the answers to better cope with what may or may not lie in the future and how to best protect Sam from any further trauma. The echo confirmed he still has the small hole or PFO in the heart that is apparently not of any health concern to him. It also ruled out the PDA that several physicians mentioned thinking he had. So mainly the cardiologist said we need to rule out the heart as causing the problem itself and then we can move our focus to the other areas, most likely Neuro and the TM issues. One new piece of info to me is that he said the heart has a kind of a backup battery for if the brain sends the wrong messages to the heart slowing it way down.. it should still keep beating at HRs of 40-50 on its own. That is why in heart transplants they can be disconnected from the brain for periods and it still can function..crazy! That is at least good I guess in case his brain is randomly sending out bad messages for these short periods. Boy am I searching for some light in the tunnel! I am still hoping it is the TM and that he will outgrow all of this. He also said that in reference to my concerns about circulation, newborns already have a bit more odd circulation as they are still centrally immature and it is effected by the central nervous system. And as it seems.. Sam has some additional maturity to do there so I guess I can understand why that might be one of his symptoms.

So our cardiologist wants one last test to rule out cardio..it is an event EKG recorder that he wears in addition to his heart and lung moniter that when he has an episode, we have to get to him and without moving him and messing up its ability to record.. hit the record button and then stimulate him to increase his HRs. MORE equipment.. ugh. but this is just for a month and might really help us to understand how he literally.. ticks. I hate to hope for an episode but if he is going to have them.. let it get recorded so we can focus our investigation a bit more on the cause of his brady episodes. Bless him.. he was so good during the long appt. He is such a sweet boy.

Another side note..I joined a Laryngomalacia and Tracheomalasia support forum and had this experience that left me reeling..if it is not God trying to reach me I don't know what is. There was this really low time in my time at sacred heart alone at ronald mcd house. They were throwing so many medical terms at me and I would try to find definitions online even though I knew that could be dangerous. I had fallen upon a youtube video of this family and their sweet baby struggling to figure out his blue episodes. I never in any way connected our babies conditions but just found comfort that this family appeared to have gotten through it unscathed. Well I found this LMTM forum and after joining got all these emails right away from other moms in similar situations. But as I read this one email it was eerily familiar and then I realized it was the mom of a boy Brayden from the you tube video months back. He has TM among other things. He is a beautiful sweet boy with two sisters just my girls ages. Her email was about how much she felt our situations were similar. What are the chances this is the person I meet when there are millions of videos on you tube of babies with health concerns...? It was hard though to find out that their son has recently been diagnosed from CP and has hearing loss due to neurological problems. It took me to a worrysome place that I try never to visit other than in prayer. Now I am praying for them.. they have become even nearer to my heart than when I wept watching their videos. If you want to view a story of this couragous little boy and family, it is under "Brayden's Journey" on you tube. 

Lastly and most importantly I am praying for the family of little Jensen Byrd who past away this week. They are in so much pain. He was a fighter and although I did not know him personally but have followed his moms blogs..clearly he was here to touch many lives and was an inspiration to all that knew him. I hope they can find peace that now he can rest. God speed to their entire community of friends and family.

Steps to Healing

We just got home from church and it was a truly great sermon..really made me think about the path of healing we are on with Sam. Not just the physical healing that he has had to do from his surgeries and all the growth but our own processing of all that happened from end of pregnancy to now.. a journey of healing for all of us for sure. Our pastor spoke about victims vs victors through Christ and I really feel we are victors in all of this..

We have gained alot and overcome some big hurdles but mainly we have stretched ourselves and found new inner strength, cemented some of our priorities and values..all because our world was rocked by events we could not control. All of us at some point or other have to go through stuff to appreciate God's gifts I guess. Our stages of emotion were not unlike the ones you go through when someone you love dies. There were angry times and times when we could not get past the "why" question and then the "what" questions of needing to know what lies ahead. We are having to let go of the natural process of needing to control everything. On low days I still want to just fix it or go back and change things or even decisions made by others... but we have to look forward and just focus on moving ahead in the way that pleases God best and helps Sam best.

Sam had a Brady Friday evening late when we went to put him down to bed. He did not get rigored or bulging eyes, arms tight and postured in etc this time. Jason was holding him and I just saw Sam's color change across his face to blue and then the alarm was going off and heart rate was down in 60s. He improved color pretty quick but heart rate stayed down lower than usual in 70s to low 100s for a little bit even after giving him caffeine. Made me nervous to go to bed but we were just so tired.

We have a cardiology appt this next wednesday morning in Pensacola and this is our first cardio followup since leaving Shands. I want to find out if his PDA/ PFOs with left to right shunting are no longer there and if I can truly drop cardio out of his diagnostic picture. I also want to make sure the circulatory issues we keep noticing are of any real concern. Sometimes we still see his hands and feet looking rather odd and either ruddish real red and when you pinch his foot it takes a while for color to return to the spot or the hands and feet look really white or paled out. He is not particularly warm or cold at the time and both extremes seem to follow each other over a short period but are not associated with Bradys as far as we can tell although friday evening I did remember noting it again to Jason earlier in the evening. The nurse who sees Sam for developmental therapy says it might be worthwhile to have a pulse ox available during those periods to moniter his oxygen saturation levels.  The docs at Shands said it was probably best to avoid using one of those since they give off a lot of false alarms and are hard to keep in position on a busy baby. I would think we could just use it more when it looked like there were signs of distress or color change. Anyway.. Sam was napping and is beginning to wake..       

Stronger than you think..

I am growing stronger every day..
Here I am lifting up my arm and shaking my rattle.. a new skill, one of many. 

So this picture really captured what the last week has been all about for Sam.. working hard and showing us how strong he really is inside. He had started holding the toy with two hands last week and then it progressed to include reaching up a bit more. We are not quite at the point of grabbing at toys hanging from above but he does enjoy the toys more now instead of being somewhat uninterested. He is able to roll to the side but not yet rolling over..we will get there!

He had his occupational therapy evaluation and they found that he is making alot of progress and will be consulting with the physical therapist, developmental coach and speech therapist on tools for him. They want us discouraging this movement he does where he arches his back and grows stiffer and arches back his neck when he wants to move. It seems to keep him from using the upper body arms and chest and so..we will keep working on it. The main thing we have been working on in speech therapy is the swallowing of small amounts of water. He had started last week working towards multiple swallowing as opposed to one big delayed gulp. Today we tried a bottle instead of just the syringe and that made him a bit nervous but he overall gave it his best try. It may still be a bit early for that but we will keep working on it. It is mainly an issue of coordination between suck swallow and breathing..and not getting too upset. He has a cardiology appt next week on wednesday morning and I am eager to feel at rest that his heart is not related at all to the  bradys..but he has so few of them lately that maybe those are going to fade away over time.

I can't believe he will be 5 months old tomorrow.. He is soo beautiful and rather perfect in my eyes. He has such a bright personality and has shown us strength like we have never known ourselves. So the shirt Sam had on the other day when we shot this pic is really fitting..

Holding on with both hands..

Today has been such a mixtures of emotions.. that is becoming the new normal for us..ups and downs..all about learning to ride the waves. The morning began with a sweet bath for Sam. Sofie helped and Sammy was such a ham cooing about it all. I got started on dressing him while trying to get the girls dressed and fed and lunches made.. same old routine but then he had a brady episode and I was shot back into that shock that I can't seem to get rid of every time it happens.. I get so upset for that split second that I think I will have a heart attack ... then we slip back into the routine and somehow we get comfortable again. I could not think to grab the video camera as I need to do to get it recorded. I never imagined this kind of pattern. I am thankful that God has spread out his episodes so I have the time to take a deep breath and forget a little before another scare. He almost always has self corrected .. back to breathing and so I guess we are starting to feel like this is just what he does.. but it is my fear of him not coming out of it that is way too ever present in my thoughts. Then he was wiped out and slept all morning. I had been weaning him off the caffeine meds..was that related or not to the episode?

Then later we had a big Up.. he amazed me with grabbing a toy with both hands!!! Major rush of adrenaline. I did not put it in his hands or anything. It was a round rattle toy laying by his side and he held it in one hand and the other came over to hold on as well..seems small but is huge to me. I even had the mind to video watching him do it. I am working hard still to get him to laugh out loud and rolling over would just about put me over the edge. We found out he will have his occupational therapy evaluation on tuesday which would focus more on the fine motor skills. I was laughing thinking of a recent day Sofie said "look mom - no hands.." and I was proud to see her not holding on to the raft in the pool.. such a big step! Now here I am jumping for joy over Sam holding something with both hands.

We were blessed with a family visit tonight and Sam got to show off his new talents to the grandparents. But with the visit we found out some really hard news about a loved one that I won't share at this point but that is making my heart hurt tonight... You know who you are -- you are so heavy on my heart and in my thoughts and prayers. I feel though that every person is handed challenges that will seem impossible and scarey but that they will face and with strength grow through it... I believe God does not give us more than we can handle. I just wish we could know the future to see how we get through it while we are in it.

I am praying for a little boy Jensen Byrd (read about him on caring bridge) I have never met but have prayed for over the past 2 years. He is in the last chapter of his fight with neuroblastoma cancer and is only 5 years old. I know his parents must be in a very dark place right now although I know they have enormous faith but I hope God continues to show them his light. This little boy has done more in his 5 years of life than many of us could ever dream of.. he has touched more people, changed more lives and experienced such extreme depth of character. He is such an inspiring angel to his loved ones, his supporters and even strangers like me that I know God already has set aside his wings and a safe place of peace. I am praying for my friend from choir now moved to a rehab facility still frustrated by no diagnosis of her debilitating symptoms but praising that she is getting some therapy she needs. I am praying for my special loved one who is probably riding a storm of emotions today..I wish I could give her calm and an assurance that she is going to be ok. There is a moving song In My Arms by the artist, Plumb that says "Knowing clouds will rage, storms will race in, but you will be safe in my arms..Rains will pour down, waves crash all around, but you will be safe in my arms." This is where I am now.."in His arms" and hopefully we all trust him enough to get us through our storms somehow..

Dog Days of Summer

It is hot, hot, hot today and we are staying inside. Isabella is off at school all day. Sam and Sofie are having some down time which is good as I am a zombie from too little sleep. Sam was fussy from teething issues all night which I think is doubly frustrating because of the increase in saliva matched with his swallowing lag. He had physical therapy this morning and is working on "righting" himself on the big ball. It is alot of work and about half an hour into it he crashes..so tired. He is bulking up and getting stronger every day though. I took photos this morning while kids were feeling playful. Sam shot me some of his disgruntled looks as well which are almost as fun to capture. I am waiting to hear from his pediatrician about the referral paperwork sent over by the neurologist to be forwarded to the cardiologist..so we can do a cardio followup locally. What a mess dealing with referrals and insurance mumbo jumbo.. I have a ton of house stuff to do..one problem I have had is feeling comfortable buzzing about to do my normal house routine without keeping sammy right with me and I spoke about that with his therapist this morning. I have had my concerns about if he is really strong enough in the bjorn..but with the head support up I think it actually will be good for him..push him a bit to work those muscles because on tummy time it is tooo easy for him to just lay his head down and sleep..maybe in the front carrier he will be forced to work more on holding it. I look forward to the weekend..we have not done much sleeping this week but usually it goes better on the weekend. Here is a picture of Sam playing and trying to play with his feeding tube.

Playing with his feeding tube.

Happy Sammy

Being silly..

sweet toes..

Sofia was full of giggles..

Talking to mommy..

145 days..

A picture from after your birth intubated in the NICU..
It is hard for me to look at all those past pictures but they are also a reminder of your strength.

Dear Sam,

It has been 145 days since your birth and all the strain that followed. Seems like yesterday but also like forever ago. I look at you now and I think about how much you have overcome already in your short little life. Through your struggles, God has worked on my heart, changing my priorities and opening my eyes to what is really precious in life. I know our family is so blessed. I remind myself of that 200 times a day. Each time there is this side of me (that must lie in all of us) though to be angry that I can't "fix" it all and make it all go away. But that did not work with my mom's cancer or my dad's sudden death.. some things are just beyond our control. Jason and I have to find the balance between being your only advocates, needing to find answers for you and letting some questions go.. being patient and trusting Him to help us figure out the future day by day.

Today your sweet sisters were both off at school and we had a bit of quality time together. I think of all those weeks and weeks in the hospital.. alot of time together but not the same. Isabella has just started Kindergarten and Sofia is in preschool 3 days a week. It was a big adjustment for me watching my oldest go off to school from 8 - 3 each day. She loves you beyond measure and wanted to introduce you to all her new classmates. She holds no resentment of how much of me you have needed.  It is good for us all though to get into the school year routine. I have such guilt over the disruption to Bella and Sofie's lives over these past months. They have shown the strain and have had some times pushing the limits but I know they will come out stronger. When I was away they would ask me if I was ever coming back and tell me how they knew you were sick but that they needed me too.. now they get nervous whenever I am heading out the door for just a quick errand. But here we are and everyone is doing ok. Routine helps. When I get into a routine I forget what could be looming around the corner..we can't live in fear all the time.

You had a brady last thursday when I had gone to answer the doorbell and came back to find you changing color, not breathing for a short episode. But it resolved and you were fine. That was the first in about 2 weeks time so at least things are pretty calm. Last week the therapist noticed that you were not holding onto things well on the left side. You are still not reaching out and grabbing at objects but if I dangle them in front of your hands you usually can find a way to get them in your grasp. Sometimes the right side of your body still gets really stiff but that is rare to me and most of the time you enjoy your physical therapy. We are still working on strengthening your neck. I saw a two month old the other day holding their head so much more than you can do and it was hard to push off that dark feeling.

As for speech therapy, you are still not allowing us to get much past about 3 mls of water in an attempted syringe feeding... and that is over half an hour of slow drips into your mouth. You just get kinda distressed in the face and about half falls out your mouth and then usually one big delayed swallow. Today the speech therapist commended you on multiple swallows after one squirt of the water..so some improvement maybe? I so want to see you taking at least some of your nourishment by mouth. I am thankful for the science of at least having the ability to feed you directly to your stomach. Between pumping your meals for you, administering meds and trying to prime your pump and doing all the normal mom things of diapers and handling the girls etc I fear we loose some of our time. I am not sure whether I will be able to keep up the fulltime pumping of your meals. My pump had already been replaced once and then yesterday died on me again..obviously even a $400 pump is not cut out for full time use.  I will try to keep it up as long as possible because I feel it is one small thing I can be doing to help keep you healthy and fighting off any kind of respiratory issues. We have still yet to hear you cough and there has been some concern about whether you could do it in the case of aspiration or illness. 

I am praying tonight for a friend from my choir who is having some health concerns and is in the hospital. I pray the Drs find answers for her and that she is home swiftly. I have been praying for friends who have a new baby that arrived a bit early and is in the nicu and 3 others that welcomed babies this week for the first time. So many sweet babies! I am also thankful for a good friend today that reminded me of how beautiful you and your sisters really are when she came and took your pictures out in our yard. She is really talented and made the girls feel special. Well, you are sleeping again now - so I better turn in. Tomorrow is wide open and will hopefully be a good one. 

Mom