A very long, unexpected week...

Last week was one of the longest and most stressful weeks we have had in quite some time. Tuesday afternoon, Sophie's cough had picked up. She had started having coughing spells Saturday but they were hit and miss. Tuesday these coughing spells were coming full force. While eating her dinner Tuesday evening, Sophia had a coughing spell that causes her to cough so hard she's gagging and the gagging caused her to vomit. The vomit led to a whole world of problems because Sophia is now on trach collar. Trach collar means her trach (the actual opening into her airway) is exposed to the elements. When she threw up, everything ran right back down into her airway. Thank God we have suctioning we were able to get a lot out right away. We then immediately changed her trach to avoid it clogging off. When we pulled the trach out more formula came out of her neck. We continued to suction her regularly for a few hours. She had seems better. Then a few hours later I noticed she felt warm. She had a low grade temp so I gave her some Tylenol. Moments later she was having another coughing spell followed by vomit. I rechecked her temp and it had reached 103. I called my husband and off we went to the Riley ER. I called the doctors on our way to the hospital and they got us back immediately in the ER. They took her for Xrays and had urine and blood labs drawn. We waited in the ER room until 5:30 am. They then told us they were admitting Sophia for possible pneumonia with aspiration. We waited until 6:30 am until we were able to get a room in the PICU. That was a very restless night for all three of us. We tried desperately to keep Sophia comfortable to allow her some sleep but with labs and blood draws and doctors it made it hard on her. John and I didn't sleep. Wednesday Sophia was able to sleep and sleep she did. Poor thing literally slept all day. Sleep was good. John and I managed a few hours in the chairs in her room Wednesday night. Thursday came around and we were hoping for a discharge but that morning Sophia developed a rash that spread over her whole body and diarrhea. They believed it was a result of her antibiotics. Instead of discharging us, they wanted to keep us another night and watch her closely as a result of the new symptoms. However, they did move us out of the PICU to the floors on the new part of Riley. Holy cow, it was like night and day comparing the new addition to Riley to where we had previously stated for 110 days. Our room was huge and private. We had a SHOWER!!! Yes, that was my first shower of the week. It was glorious! It had a couch and a cot and tvs and a fridge and a WII. What it was like staying in a hotel lol. John and I got some rest..sorta. That night John was up and down again with Sophia because her breathing treatments made her restless and fussy. He let me sleep, sorta. Wonderful. I got up early with her the next morning and let John sleep. At this point we were mentally, emotionally, and physically wiped out. The bickering began. Luckily for us, we realize why and we try and let it go and focus on the important things. Friday rolled around and the asked to keep us another night because of her rash. I just wanted to make it go away. Finally they changed her meds and I asked for some Aquaphor. Aquaphor is the BEST thing ever. Future and new parents I highly recommend you keep some on hand. It is great for all types of skin issues. I lathered her in it for the night and by morning Saturday (as well as a result of med changes) her rash was improving and her respiratory issues were stable. Finally, that evening they discharged Sophia and we were able to take her home again. So that makes a total of 115 nights we have spent in Riley. I am so glad we reacted fast and got her into the ER. I knew on the drive we would be admitted because of the nature of Sophia's health. I would much later be in the hospital and nothing happen than at home and something bad happen. Any little cold may land us in the hospital. So let me make a friendly public health announcement, a cold that seems minor or insignificant to you may knock Sophia off her feet. If you have been sick, around someone that has been sick, sniffling, coughing, have not finished your antibiotics etc. please do not come visit our home until you are back to 100%. This is very serious business and I would prefer not to keep tallying up our days/nights spent at Riley. I know many of you are aware of this and it seems like a DUH statement, but as mommy I have to remember to reinforce the matter. HAND WASHING, its the knew cool thing to do:) So for now, Sophia is back to smiling and playing. We still have a slight cough and our working through it with continued meds and breathing treatments. Luckily, the little fighter did not let this bug set her back on the trach collar. She is so tough! God loves her and mommy and daddy too.

Happy Father's Day

In the moment our daughter was born my husband never shined more as a man, a husband, and a father. The change was instant for him. Without hesitation, fear, or reservation John immediately became a Daddy. I have never loved him more than I did in the first days when he whole-heartedly stepped into a new life and new role as protector, as defender, as healer, as husband, as father. In the mist of our despair, John was there. He was there holding me up and wiping my tears and he was there by Sophia's side day and night. He was there through all of the first tests and exams and ambulance rides. He was there. Since that time, John continues to be there. He is there to hold us to make us laugh. He is there to give hugs and wipe tears. He is there to provide for us and love us. I love the way John loves our daughter. The way his face lights up when he sees her. The way she smiles at him when he comes home from work. I love the way he says "Daddy's home Sophia". I love the way he still secretly tears up when he thinks I'm not looking because he knows how special she is and how lucky we are and how far we've come. I love how he protects us and defends us. I love that he is involved. I love the  way he believes and the hopes he has for us. I love his honestly about our situation. I love mostly that he will always love Sophia. I know he will always do anything and everything in his power to be her super hero. Secretly he is mine too. Anyone can become a father, but it truly takes a man with a special heart to become a Daddy. John you amaze me everyday. I am so lucky to have you as a husband but more importantly I am so lucky to have you as the father of our baby girl. Sophia will always be lucky to have you. So, on your first Father's Day, I hope you feel proud knowing you are one hell of a daddy. Be proud in knowing you make a difference in her life. Be proud knowing you are a father. Wear the title with honor for you are amongst the GREATS and I am so proud of who you are. I love you so deeply John. Thank you for always being the best husband and daddy Sophia and I could ever ask for.

HAPPY FIRST FATHER'S DAY JOHN

WE LOVE YOU TO THE MOON and back

Love,

Amanda and Sophia

The Unnecessary

My daughter's on trach collar, my daughter's on trach collar, my daughter's on trach collar I keep repeating this to myself because I cannot let the negative comments and actions of others impede on our joy. It amazes me that after EVERYTHING we have gone through this year with Sophia that people can find it within themselves to create more drama and stresses in our lives. Selfish drama and petty behaviors. With everything John and I have gone through with Sophia and in light of all her accomplishments we are still struggling to control the negative things creeping into our lives. I know I should not let any of these things bother me but I do. I have a huge heart and I carry a lot of things with me. Though I have bitten my tongue to these outside stressers, my hold is growing weaker and weaker. I have never been anything but kind and welcoming but I will no longer be tolerant of the unwanted snarkiness and pettiness that allures in the shadows of our happy. I am a wife and a mother first and foremost. I will ALWAYS be wife and mother. They are my greatest joys and my greatest duties. I feel that instinctive "mama-bear" nature filling my core. I will always protect my baby, my family. If you question, this primal reaction then you are no mother. Today, I will turn to peace and find strength and happiness within my daughter and my husband. Today, I will STOP worrying for the things I cannot control or change. Today, I will not let my smile grow weary by the assumptions, misperceptions, excuses and blame.  I cannot control the free-will or thoughts of others but I can control mine. Today, I will choose to remain positive, happy. I will build a wall, a barrier of protection, between the outside drama and our happiness. At the end of the day, they have their excuses to help them sleep better, but in the mornings that heaviness they feel on their shoulders is guilt. Though, don't you worry my daughter will always know love. Will always be loved regardless of who chooses to be apart of that or not.

Accomplishments

Nothing surpasses the feeling of being accomplished. Accomplished and proud. Knowing how far Sophia as came and watching her one by one knock down the obstructions in her life's path as by far made me the most proud mommy on earth. She amazes me daily. Today, I am completely full of heart. A smile on my face, not even the most negative of people can take away from me. Sophia met with her pulmonary doctor today and wowed them with her progress. We heard every answer we wanted to hear today. I knew she could do it. I knew she was ready. Sophia knew SHE was READY. Sophia is now on trach collar all day with oxygen and CPAP (vent) with rate at night or during long naps. Being on trach collar all day is the best news so far. Something we have been longing to hear since moments after her trach surgery. Being on trach collar will allow for so much continued improvements physically and with her developmentally. Also, being on the trach collar during the day makes Sophia an easy...easier baby to travel with. For travel trach collar she is on an HME and oxygen only. WOW! That is so awesome. You have no idea. Right now, we still are required to bring everything with us for emergencies but not everything has to be attached to my baby at once. So for, now we are super portable but still limited by time and oxygen. We can only be on the travel collar for limited times and the travel oxygen tends to run out quickly but you know what...who's complaining at this point. This is amazing! I think we will be pleasantly surprised by the time, the ease, and the simple peace of mind knowing she is breathing on her own. She is getting stronger and improving. In two weeks, we should be visiting speech pathology again to discuss the pacimere valve. This appointment and that valve...AAHHH I can't even describe what that means to me. I have big hopes to hear that tiny cry of my sweet baby girl. In a month, we will revisit pulmonary and then discuss a sleep study. During the sleep study, we will be determining if Sophia is ready to come off the vent at night or if they need/can make changes to the vent settings at night. The last change of the day was a trach change. They increased the size of her trach to help with leaks and in the hopes to stop those sneaky decannulations. After a trip to xray we were ready to start the new adventures. I was so happy when the doctor told us all of this fantastic news today. I literally threw my hands in the air with excitement. Sophia looked at me like I was crazy. Crazy about her...always. On our trip home from Riley, we thought we would surprise daddy at work and show him the good news. I think he was just as excited as I was.  We are just thrilled by her progress. Thrilled for our family. Thrilled for Sophia. She has no idea how wonderful she truly is to us. Now we have reached a huge turning point in Sophia's health.  Sophia has reached a huge goal. We are only steps closer from being vent free. Many prayers, good tidings, and happy thoughts for continued success and accomplishments.

Proud Parents

I must say that right now I would like to be the mommy to brag about her baby girl. I am just so incredibly proud of Sophia. The therapist is too! She is making weekly improvements. Noticeable improvements. She is doing great things with her hands and reaching. Right on track. Sophie loves books. She likes holding them and looking at the pictures. She is getting stronger and stronger daily with her head and neck control. I even think she is starting to like tummy time. Though our road is long and windy, we will make it through the journey, wait and see. Sophia is also up to her two hour twice a day trach collar trials. She got there just as the doctor ordered and tolerates it extremely well!! I just am so excited for Thursday's much anticipated visit to pulmonary. I really hope they have good news for us. As far as everything else is concerned we are still doing our regular check ups and so forth. For now, our focus is working on her physical development and getting her lungs and airway strong enough to come off of the vent. I am just so proud of her. She is my little inspiration. Could you imagine a world where everyone had the perseverance and determination to succeed as Sophia. She truly is a miracle and I am proud to have a front row seat at watching it revealed.

A'mist the Excitement

There has been some excitement these past couple of weeks. Last week, we didn't have our regular nurse because she was on her honeymoon. That of course through our routine off having new nurses come into help. Early in the week, Sophia started her therapies. I already love her therapist. She is wonderful with her. She sings to her has the work on her physical therapy. She is even showing Sophia some signs. This week the PT said she already saw improvements in Sophia. Yup, my girl's a rock star. Therapy is going to be so great for her. The trach collar is allowing her to have more tummy time. I actually believe she is starting to love tummy time. Which is great because getting her neck strong is the goal. Late in last week, Sophia started feeling yucky. She started breathing faster, high heart rates, thick secretions etc. So we had to make an emergency trip up to Riley. The doctors said she may have been working through a virus and sent us home with a few tips to help her work through it. By the weekends end she was feeling better. But not before she gave mom a little scare Saturday during bath-time. I had just finished her bath and was changing her trach ties when the little miss that it would be fun to tug on her ballard. POP came the trach. Of course a few curse words slipped from my mouth as this momma acted quickly and had the new trach in and secure in a matter of seconds. Talk about an adrenaline rush. There was no time to think just react and thank goodness I react well under pressure. Its the teacher in me that thinks quick. Both of these events just remind me that how in a instant things can quickly change with Sophia. Which brings me to yesterday, John and I were moving Sophia to the kitchen so she could swing and watch her momma cook dinner. The transport went smoothly and as I laid her into the swing I noticed a HISS. I immediately checked all of her tubes and could not find the culprit. John then said well maybe she's decannulated. I skeptically checked and sure enough, her trach was completely out and laying against her neck. So we immediately rushed her into the crib, laid her down, and had the new trach in and secure like clockwork. That was good team work. We both just moved to what we needed to do without even giving orders to the other. I am still completely baffled on how this decannulation happened because I can't recall anything pulling or snagging. Nothing. Sophia obviously just likes to keep her mommy on her toes. So in less than a week, Sophie successfully decannulated herself not once but twice. So I have had two emergency changes in one week. What a rush. Today, was a busy day as well. We went back to Riley for our swallow study. I gave her a couple of tiny droppers of formula and cereal as they watched her swallow on an xray. The first two swallows were successful. My heart started to smile and then the third swallow she aspirated into her airway...SIGH. However, being the optimist I am choosing to take this all as good news in the since she has shown improvement. On the first swallow study, she aspirated right away and showed no engagement in swallowing. Today, she was initiating a swallow and had two successful ones. Improvement is improvement. So for now, she cannot have food by mouth because it still proves unsafe but at least we are moving forward. Speech said they would like to revisit the swallow study once we reach the pacimere valve. Our original appt of June 7 was moved back until the 14th due to her cold. Today, we just finished the last round of an hour and a half trach trials and tomorrow we move onto an hour 45 mins for the next three days. The doctor wants Sophia to be on 2 hour twice a day trials before we move forward. She is doing wonderfully on the collar. I just can't wait to hear the next steps for her. So amist all the excitement these past couple of days, we have still found plenty of times to smile. Smiling's the best, we love smiling. :-)

This Evening

This evening as I was rocking Sophia a song came on the radio, as I looked down at her as she was drifting to sleep, tears filled my eyes because "All at Once" the world can overwhelm you.

"All At Once"

All at once,
The world can overwhelm me
There's almost nothin' that you could tell me
That could ease my mind

Which way will you run
When it's always all around you
And the feelin' lost and found you again
A feelin' that we have no control
Around the sun
Some say
There's gonna be the new hell
Some say
It's still too early to tell
Some say
It really ain't no myth at all

Keep askin' ourselves are we really
Strong enough
There's so many things that we got
Too proud of
We're too proud of
We're too proud of

I wanna take the preconceived
Out from underneath your feet
We could shake it off
Instead we'll plant some seeds
We'll watch em' as they grow
And with each new beat
From your heart the roots grow deeper
The branches will they reach for what
Nobody really knows
But underneath it all
Theres this heart all alone

What about is gone
And it really won't be so long
Sometimes it feels like a heart is no place to be singin' from at all

Theres a world we've never seen
Theres still hope between the dreams
The weight of it all
Could blow away with a breeze
If you're waiting on the wind
Don't forget to breathe
Cause as the darkness gets deeper
We'll be sinkin as we reach for love
At least somethin we could hold
But I'll reach to you from where time just cant go

What about is gone
And it really wont be so long
Sometimes it feels like a heart is no place to be singin' from at all

This song holds a special place in my heart. Every time I hear it I am brought back to Riley. A time when the world literally overwhelmed me. A time when I was unsure of things. A time when we questioned if we were strong enough. A time when we knew all we had was our hearts. A time when we didn't know what the future holds. I time when the weight of it all could literally have blown us away but instead of "completely" crumbling we reached for each other and we reached for LOVE. Love was something we could hold onto. And we held on like hell. Sometimes, this song reminds me of these feelings. Feelings of uncertainty. Feelings of that I really can't explain. Then I remember, even when the world does overwhelm me. I have love. A love for my daughter that makes me stronger than I have ever been.  A love for my husband that assures me the fights worth fighting and the hold is worth holding. A love for my family that no matter how overwhelmed I am, I know I will not be blown over.