Timothy's journey

Today Is the day It started.. Dec 31, 2010Today is Timothy's due date. I am going to get induced.The husband (Mike) and I needed to be at the hospital at the hospital at 6:30am..Mike and I woke up at 6:00am and headed to the hospital. Grandpa and Grandma watched brother..I got induced at 11:am.. So now it is time to wait for you to come. Grandpa, Grandma, and Christopher came by to see how things was going.. They didn't stay long.. At 12:00pm I had an iv shot of a pain reliever that last about 2 hours.. Well around 2:00pm I surely thought you would be here in at least 15 minutes. So I text your Aunt TJ and Grandma Gerri to let them know you was coming soon. Dad said it wont be for another half hour.. Well surly enough you was born into this world at 2:39pm.  7lbs 14oz 19in long

Holding Timothy for the first time

It was about 2 minutes after Timothy was born that you started turning so blue.. We had no idea why. At first we thought maybe it was because I was only dilated to a 8 when you was born. Maybe it was to fast for you? What could be wrong? So many things come a crossed our mind..The Dr stitched me up while you was being cared for.. Your blueness went away and they let me hold you one more time. They took you to the Nursery and that is where you stayed all night.. Dad and I stayed with you every second we could.. Nurses and Dr's had no idea yet. Pulmonary Hypertension? What could it be. I had a healthy pregnancy, nothing showed up in ultrasounds.. I started pumping as soon as I could. I was not able to nurse you right away so I new I had to get you the "Gold." The day and night was so long. tears, pumping, in and out of seeing you, wondering when they would find out what is wrong... Later that day I finally was able to nurse you. It was a wonderful feeling. I was so happy to nurse you, In a way it felt like nothing was wrong. (aside from all the tubes and wires attached to you). It was an amazing thing.. 

Jan 1, 2011
Doernbecher Children's Hospital

Trying to get you to eat moms milkToday you was moved to OHSU for them to better care for you and find out what is wrong.Since I was up and moving a lot they released me early.. You and I  headed in an ambulance to OHSU and dad followed in the car..You stayed at the NICU.. The nurses there was great. Dr's was in and out checking on you and trying to find out what was wrong. you had so many test done.ProceduresECHO,Umbilical Arterial Catheterization,Head Ultrasound,Renal Ultrasound,EKG..They had you on a nasal canula at 100% But took you off once your defect was identified.Later that day is when we learned you have a heart defect. The Dr's who told us could only tell us that much. They couldn't say anymore. Dad and I lost it, we was afraid we would lose you. Later that day we was told that you had DORV (Double Outlet Right Ventricle) with VSD (Ventricular Septal Defect.)Your Resp was at 27,    BP 46/24,   Pulse 152,   Temp 99 F,   WT 3.495kg (7lbs 11.3oz),   SpO2 94%. You was taken off of my milk and on just IV until Jan 3rd. Then you was on EMM or Similac Advance 20 calories.. Jan 3rd we was released to go home, your O2 sats in the high 80s to high 90s... We was told you would need open heart surgery between 4-6 months old

Coming Home

Honestly the weeks following your birth was such a blur. there was so many worries, and you needed non stop care. Mom and dad did take a night to the movies while you and brother stayed with your Aunt Kari and Uncle shawn.. We really enjoyed you being home and loved having you with us.  And I dont remember a whole lot until your next Hospital stay.

Jan 26, 2011
Dr Appointment
BP 92/63,   Pulse 168,   Resp 60,   WT 3.675kg (8lbs 1.6oz)   SpO2 75%
Dr said.. Doing OK but his weight gain is on the lower end of normal.

Feb 8, 2011

BP 78/66,   Pulse 151,   Temp 97.5 F,   Resp 67,   WT 3.87kg (8lbs 8.5oz)
Double Outlet Right Ventricle, Muscular Ventricular Septal Defect, Bicuspid Aortic Valve,
Poor Growth and feeding
Blood cultures,
Urine Cultures,
Modified Barium Swallow 2/09/2011-Positive for reflux,
Dietician consult,
Speech language pathology consult,
Synogis 2/10/2011..
Timothy was having poor weight gain from throwing up and his heart working hard, his Saturations was in the 50's and 60's.. He was admitted from the clinic for further evaluation.
When he was Discharge on 2/12/2011 he was on 0.5 liters by nasal cannula and a feeding tube (NG) at all times and 4 different medications.

Feb 14, 2011
Dr Appointment
BP 99/76,   Pulse 170,   WT 3.87kg (8lbs 8.5oz)   SpO2 73%
He is doing as good as expected.

Feb 15, 2011
Was admitted for heart failure after started on oxygen during last admission.
Had a cardiac MRI showing streaming causing his low oxygen.
Had a cardiac cath and had a balloon dilation/atrail septostomy on Feb 23, 2011.. He did good with the procedure and had improved oxygen saturations afterwards. Due to his frequent throwing up his tube feeds were changed to EMM and Nutramigen, And he had his reflux medication increased..
While he was in the hospital he sustained a pressure sore to his left heel. and also developed Blisters on his right hand. May be due from contact of clear tape or from fluid under IV bandage..
On discharge 2/25/2011 Timothy is on 6 Medications. He is on EMM with Nutramigen for a total of 30kcal/once and to run his feeding tube at 20ml/h continuously. Has an appointment for placement of G Tube on March 7, 2011.

March 2, 2011
Dr Appointment
BP77/41,   Pulse 135,   Resp 32,   WT 3.91kg (8lbs 9.9oz),   SpO2 80%
We are increasing his calories by giving him more volume over the next few days, 22ml/h

meeting cousins for the first time.. Christopher, Damian, Timothy, Izah

March 7, 2011

Timothy was admitted for G Tube placement.. The placement went great. He did a wonderful job. He did have periods of increased secretions and desaturations  to hi 50's on RA (Room Air) and required some high flow nasal cannula up to 3 liters of RA. RSV test was negative and his respiratory status was improved on discharge  and had sats of 75-85%

Laparoscopic Gastrostomy tube
Cardiac Echo
Pediatric Surgery consult
SLP consult
Nutrition consult
Released March 10, 2011 he was on 33kcal at continuous rate of 20ml/h and oral intake as tolerated. And on 5 Medications.

March 15, 2011

Dr Appointment
I Request to watch him over night at the hospital
BP 107/55,   Pulse 136,   Resp 60,   WT 4.22kg (9lbs 4.9oz),   SpO2 80%
Timothy was admitted for Failure to thrive.
He was throwing up more, Congested, and working harder to breath. Another RSV test was don on day 2 of admission and was negative. He received suctioning and was required up to 6L of HF to maintain saturations of 75-85%. He worsened on day 3 of stay with head bobbing, They did a chest xray and nothing was concerning. Although he was still coughing he seemed to be doing good.. He had a few different changes in his feed. He was not tolerating feeds well so we had switched it up to find what best fits him at that time. He had a positive RSV on day 3. Before going home he was taken off of oxygen. They have learned that it makes him have more heart failure. So when it must be given he must be watched. It is very confusing to explain, But that is the way Timothy's body works.
He had improved at discharge time. March 23, 2011. He had started continuous feeds at 22ml/h with 30kcal/oz I encouraged them to fortify your oral feeds so this way you would get extra calories.

March 24, 2011
Congestive heart failure,
DORV with VSD, With conal tissue re-directing left-ventricular outflow toward pulmonary artery,
Bicuspid aortic valve,
Failure to thrive/ Throwing up and not gaining weight

His throwing up improved after admission. But then again it always has. He had lots of air in his belly so we have to vent him often. He has not been gaining much weight but he is not losing weight at this time. He gained about 300grams in 3 weeks, less them expected but he is showing weight gain. He is now at 26ml/h. It is possible that he has a reflux disease, that could be contributing to his fussiness and emesis.
He was discharged on March 29, 2011

April 5, 2011
Dr Appointment
Dr said. Thimothy looks good today. He has gained an average of 23grams per day over the last 7 days on breastmilk at 27ml/h...
Sent home with baby scale to continue checking on his weight. NO MORE FORMULA.. He has been doing great.

April 11, 2011 
He was admitted for worsening respiratory symptoms, caused by respiratory infection.. He needed HF/RA to help him breath and lots of sucction. The next day he was taken off of HF and was relexed ed4April 12, 2011

May 9, 2011
Dr Appointment
BP 109/66,   Pulse 124,   WT 5.18 (11lbs6.7oz),    SpO2 97%
Keep fallow up appointment on May 18, 2011 we will then talk about surgery and when it might be.

May 18, 2011 
Dr Appointment
Things went good today.. The Dr said Timothy is looking great but needed to gain more weight before surgery.. We are going to try a few things to make him gain the weight without having to add formula to my breastmilk.. And If he is not gaining enough weight in a week then they will get him scheduled for surgery soon. If he does gain the weight they want to wait until he is 6 months because he does need to grow as much as he can so he can be healthy for surgery and after...

Timothy is going to need 3 open heart surgerys.. He should be having his first between 5-6 months old.. He is also going to be on a few medications and will need check ups for the rest of his life.

May 20,2011
Today I had talked to my Grandma and Grandpa (Dad's Side) and Grandma informed me that there heart problems run in the family and that we have had a few relatives who have passed away from heart problems...  I had a hole in my heart that had closed later in my life and my Dad also had one that had closed later in his life.. So this could be the cause?????

May 25, 2011
Timothy seen his Dr today.. Just cuz we was up at OHSU picking up his medication. So we thought we would stop by and let him know what is going on with him. Well his Dr said that Timothy seems to be doing ok with his and we will take it week by week..
At this point all we can do is wait some more and see how he is doing.. & when his body is ready and gives us the ok..

May 26, 2011
Well we had a home visit with Timothy's nurse today.. She noticed right away that it looks to be he in in more heart failure.. He has been throwing up, not gaining enough weight, stuffed up, coughing, retracting alot more then normal... She said for sure he needs this surgery as  soon as possible

May 30,2011

At 8:00pm I gave Timothy his medication like i do every night and I noticed some hives, well we took him to the ER they said they thought it might have been from the new shirt he got (Forgot to wash it). When the shirt was removed the hives started to go away... They sent us home..

May 31, 2011 
Timothy ended up with the hives again, around 9:00am. So i showerd him in hopes that it would go away. It went away about 20 minutes later and then had come back a few hours later.. So to the ER we went. they think it is a viral infection.. Tho they are not for sure.. We may give him benadryl but only if he really cant handle it.

Today we also learned that Timothy's Dr. will no longer be at OHSU after the end of June.. He is going to be doing other training in another state... We are going to miss him so much and hope to hear from him  time to time...

Dr Bailly also let us know that Timothy will be having surgery in June.. We are going to know a date this coming Tuesday or Wednesday... We are so excited but scared.. This is going to be big...

June 9, 2011

Today we had an appointment with Dr Kelly
He had explained that Timothy will be most likely get a cardiac cath done next week. He will also be going in for surgery in the next few weeks.

He had told us how complicated timothy's heart is and how long and complicated this surgery is going to be, because of this there are more complications that could happen.. They are going to have plan A and plan B for when it is time for surgery... We need to keep him away kids, so yes this means bubby (Christopher) needs to limit his time with timothy.
Right now we will be staying in the bedroom most of the time and only go out places when we need to..
He is on another powder to increase his calories

Tomorrow they are going to have they surgery meetings that they have every friday. They will let us know what and when it is going to be.. His expected recovery time for his condition is 10 days to 3 weeks..
Will let you know what the Dr says.

Faith Deployed: Daily Encouragement for Military Wives

Sasha Oylear would appreciate our prayers for her son, Timothy. He has been diagnosed with congestive heart failure and is being scheduled for surgery very soon. ~Sherry http://timothyoylear.blogspot.com/

Timothy Oylear


Like ·  · Share · June 9, 2011 at 7:51pm · 

18 people like this.

Pam Prescott Fuller Praying for that precious baby, his family and his doctors and nurses that will be taking care of him.

June 9, 2011 at 7:53pm · Like ·  4

Vanessa Dean Many Prayers!

June 9, 2011 at 7:55pm · Like

MilitaryDiscounters.com Praying for you and your little one.

June 9, 2011 at 7:57pm · Like

Amy Miller Coe praying

June 9, 2011 at 7:59pm · Like

Annalisa W-p in our prayers may God work through these surgeons ! have faith all will be ok ! please keep me posted on how everything is going! a bunch of hugs to you're friends family!

June 9, 2011 at 7:59pm · Like

Ashley M. Simmons As a Mom, this breaks my heart into pieces, sending many many many prayers, and lots of love from the Simmons Family, for Timothy!

June 9, 2011 at 8:00pm · Like

Rebecca Arline Robbins reading her blog made me cry.

June 9, 2011 at 8:01pm · Like

Kym R Sosa Prayers coming from us!!!

June 9, 2011 at 8:01pm · Like

Kim McHugh Prayers go out to this family.

June 9, 2011 at 8:02pm · Like

Theresa Kennedy-Sumner Prayers to Timothy & family

June 9, 2011 at 8:03pm · Like

Crystal Rands Praying for such an innocent human being...

June 9, 2011 at 8:07pm · Like

Sāsha Oylear thank you all so very much.. Please follow the blog for i am better at updating that then anything else...

June 9, 2011 at 8:11pm · Like

Erin Kothman Thinking about you and your family

June 9, 2011 at 8:13pm · Like

Marisa Elkins Bejar Praying for Timothy and your family!

June 9, 2011 at 8:25pm · Like

Rebecca Zieleniewski Ballentine OMG, Just read your story and I will be praying! Did you take ANY medication while you were pregnant? I am so sorry you are dealing with this. I deliver my first baby in Nov.

June 9, 2011 at 8:27pm · Like

Sarah N Nick James Praying for your family, and that sweet little boy!

June 9, 2011 at 8:27pm · Like

Sāsha Oylear yes i did start zoloft. i talked to my sons dr about this. he had let me know that this defect is caused (formed) about 2-8 weeks after conception. sometimes it just happens and sometimes it is genetic.. i also found out that family on my d...

See More

June 9, 2011 at 8:37pm · Like

Tim Brown Prayers to Sasha and her son. May the Lord bless the hands of the doctors and show this family His glory through this trial and they turn to the Lord for guidance.

June 9, 2011 at 8:38pm · Like

Janice Wilson Salter Prayers for Timothy and family...

June 9, 2011 at 8:44pm · Like

Dana Lovejoy Curtis ‎((((((((((((prayers)))))))))))) Going out for Timothy...Thank you, Father that you HEAR our Prayers. Thank you for restoring Timothy's heart in Jesus' Name we Pray. Amen

June 9, 2011 at 9:00pm · Like

Doreen Mcgettigan Will be praying for this little angel and his family. What a beautiful journal♥

June 9, 2011 at 9:03pm · Like

Alyssa Marie Sendin my prayers your way sasha your babies beautiful god has a soulution for him.

June 9, 2011 at 9:09pm · Like

Amanda Moya-Wagner Read through the website. Prayers for all of you and for God to guide the surgeons hands and for complete healing for your precious baby!!

June 9, 2011 at 9:26pm · Like

Lisa Talkington Poland Praying for Timothy and family.

June 9, 2011 at 9:35pm · Like

Anna-Lisa Whiten Praying for Timothy that God will heal him, guide the surgeons hands, and provide comfort for the whole family. Trust in God.

June 9, 2011 at 9:52pm · Like

Wil-Jessica Williams He is so precious. Prayers for him and your whole family.

June 9, 2011 at 9:54pm · Like

Kelly Zwick Stobie My friends little boy had open heart surgery when he was super little. He is moving around and is a fantastic little boy. Her son has degeorge syndrome, and they have heart and feeding issues and immunity issues. We will pray for that sweet baby to have the best care and be healthy!

June 9, 2011 at 10:06pm · Like

Sāsha Oylear Thank you all for all the prayers.. we are so greatful..

June 9, 2011 at 10:27pm · Like

d'Arcy Faveris Patterson will pray for you family mrs oylear n godbless you all

June 9, 2011 at 10:27pm · Like

Tammy Hoyle Walker Sending Prayers.

June 10, 2011 at 3:57am · Like

Tish Roberts How could you NOT pray for such a cutie!!!

June 10, 2011 at 4:12am · Like

Kati MacLeod Henry My friends had a baby born with 1/2 of her heart. Hypo-plastic Left Heart Syndrome. They know this before she was born, but quite an ordeal. Lots of the same issues you are experiencing. But the good news is 3 years later she is doing well....

See More

June 10, 2011 at 7:18am · Like

Sāsha Oylear I honestly thought we was going to have some people comment but i didnt think this many... it is nice to know that you all took the time to pray for my son.. thanks so much... Right now ohsu is having their meeting for timothy. i should hear something later about a date and what surgery it may be

June 10, 2011 at 7:32am · Like

Martha A. Hampton My prayers go out to the baby and family, and surgeons... Hope surgery is successful.....

June 10, 2011 at 10:36am · Like

Sāsha Oylear I just updated the our life page on the blog with info about surgery

June 10, 2011 at 12:51pm · Like

Mara Lubic Praying for him and his family!

June 10, 2011 at 2:31pm · Like

June 10, 2011
Well we just got the call saying Timothy will have another cardiac cath done on June 16th, This will help the Dr's and Surgeons decide what surgery is going to be best for timothy.. So we will be spending a couple days in the hospital. I dont think Timothy is going to be up for doing anything for fathers day.. So we will prolly stay home nothing to exciting for him but rest. For dad (Mike) I can cook him breakfast or lunch.. I guess we will wait and see.
We also just received a call from the Dr. He said they are waiting on the data they will receive from the cardiac cath to decide which surgery will benefit timothy the most. He also outlined a new repair option that was discussed this morning, it would involve closing the hole in his heart and removing a muscle bundle that is blocking his aorta. This is a much more simplistic procedure than the others, but with a very high risk of timothy needing a pace maker.

June 15, 2011

Unsure of date.

June 16, 2011

Today Timothy had to stop feeding at 8am. Be at OHSU by 10am to be admitted for a cardiac cath.. They are going to do imaging in hopes to help with understanding his heart and the best way for surgery..  They took him back to start the cath at 1pm. he was done by 5pm. Everything seems to be pretty good but his blood pressure to his lungs was high. The dr's informed us that this would mean surgery and its recoving time would be a little longer.. Timothy rested in the recovery room tell 8pm and we went upstairs to doernbecher. By 11pm his oxygen sats was dropping between low 40's and low 70's (he is normally 75-85) Most of this time he was hanging out in the 50's and 60's.. Around 8am June 17,2011 they put him on low blowby oxygen.. this keep his sats normal. Although every time we tryed removing the oxygen he would just drop his sats again.. About 2pm we tryed removing it again and he did good. One of his dr's had come in and let us know that the still do not have a surgery date and may know more Monday or Tuesday, if we didn't hear from them then they was going to call us after Fridays surgical meeting. We was later released around 6pm..

June 26, 2011

Tell today is sunday we are at the in laws haveing a beautiful dinner with the whole family..
So what i wanted to up date everyone and let them know that on friday we was told that Timothy will prolly not have surgery until Middle to End of July..

I am truely unsure of what to think about this.. But I wonder why do they tell us that he is going to have it done at the end of june and then change it.. It is fustrating and yet at the same time when the date is pushed out that mean we know that is more time with him.. It is getting pretty scary for us cuz at night he turns blue/purple and we know his oxygen is getting low. we just wonder how long are they ok with this? I guess knowing that as long as everything goes good that this will make him feel and look much better..

July 7, 2011

Well we have 6 days tell surgery. I am getting pretty excited and scared.. Timothy seems to be doing alight. I have been wanting to do some fun things with timothy and christopher before the surgery but dad is at drill in washington for the weekend and there is so much to get done before surgery so it looks like that is not going to happen .... They still are not sure what surgery they are going to do.. There is 2 options that they are looking at. On surgery date July 13th, 2011 they are going to open him up and talk about what they are going to do.. They think opening him first will give them the best look at his heart. Then they will decide what surgery to do.

July 13, 2011 

They canceled Timothys surgery.. After waking up early, getting dressed, and getting ready to put Timothy in his car seat. I got a phone call. I answered it and it was a nurse saying we had to cancel Timothy's surgery and it would be done in a few weeks.

So I had thought about something this morning while in the shower thinking that I needed to update the page.. Well I got to thinking it would be kinda cool to do my post about timothy today and yesterday and put everyones comments on here so that the support could also be seen on here by other viewers.. I am going to copy and past it all....
How I feel is upset.. I really thought today was going to be the day for a new beginning. I surly thought omg this day if finally here I am so scared and excited.. When I got the phone call saying it isn't going to be today, I was crushed.. I felt as if they didn't care.. I know they are wonderful Drs and things happen but I thought why couldn't they reschedule someone else and get him in within a few days.. we are all packed and ready. I tried to get emotionally ready as I could.. All I wanted to do today was break down and cry.. Thanks to my sister being here and keeping my mind off of it, it sure helped....... I am just out of words.. I don't even know anymore what to think.. I guess next time I am not going to be to excited... I don't want to be ready and then it not happen again.

July 12th & July 13th

Sasha Oylear
Heading to the hospital. Timothy is having his sedated echo done. and then later sees the dr. we r going to be awhile.

Jennifer Stanley ill pray for ur family cousin!

TeeJae Gonzalez Give Him Aunties Love...My Thought And Prayers Continue For U All..Call Me Later... Love to all...

Jennifer Stanley hey sasha i called my pastor hes gonna have a group prayer for u and ur family stay strong we all love u guys plz call or text me with up dates

Marla Fordham text me to let me know how it goes. I have totally been out of it preparing for this deployment in 2 wks but i have been keeping up with everything on here and thinking about you guys!:) X's and O's for the little guy!

Marie Grammer prayers are with you ... keep in touch.... :) take care..

Sasha Oylear
Timothys sedated echo was cancelled cuz of his cough, stuffy nose, diarrhea. he is getting an xray done and blood work.. He may not have surgery tomorrow..
Marla Fordham OH NO!!!! thinking about you!

Tiffany Warren I will keep you all in my prayers I love you guys

Sasha Oylear
Be at hospital at 6:00am he will leave to be preped by 7:30am but wont start tell 9:00am

TeeJae Gonzalez Have u all in My Prayers,remember hes a strong Boy and will Get Through It... I want All updates,and when he goes in and comes out
*Truely Blessed*

Marie Grammer said a prayer...

Debbie Flippin Praying for him to make a speedy recovery and for you Mom & Dad to keep your strength through this long awaited surgery as well as through the coming weeks....

Blessed Diego Ramirez praying for the little man and his mama & daddy too!!

Christy Cantrell-Olson Prayers for you all... through the whole process ill be thinking and praying for you guys

Sasha Oylear
Thanks everyone for sending out best wishes and prayers for timothy... surgery time is estimated to be 5-7 hours long. And wont see him between 1-2 hours after

Debbie Flippin Hang in there sweety!! Love to you all

Linda Rea Smith I can't remember what this one is for? Best wishes for a speedy recovery!

Marla Fordham so the surgery is still on??

Brittany Warren Our prays are with you guys we love n hope for the best

Sasha Oylear yes 6am be at hospital. 7:30 they r taken him and between 8:30 & 9:00 surgery

Marla Fordham CALL ME IF YOU NEED TO TALK! Ill have my phone! ♥ my hugs, thoughts, and prayers are for you and your little guy tomorrow♥

Sasha Oylear
I am so fustrated... How can they cancel his surgery... gosh it just hurts to know he is not getting any better why they wait....

Marla Fordham What was their reasoning????

Sasha Oylear Emergancy surgery with someone else.

Debbie Flippin Omgoodness that has got to be so frustrating! im sorry that he has to wait for this and sorry for you guys! i will continue my prayers for him & you guys ...much love to u all Sasha

Sasha Oylear thanks... Ya they canceled just a few minutes before we was going to get the boys in the car

Sasha Oylear i get they had to do someone last night. But they have told us they do 2 surgerys a day... So after last nights they should of went home rested and put timothy in at the 10:30 surgery.

Debbie Flippin So have they rescheduled him yet?


Sasha Oylear no they have not..

Marie Grammer I'm sorry... but just think of the little life that they saved last night so they must of felt that Timmy was safe enough to hold off for a few hours.. prayers still all around you...


Sasha Oylear
Dr called and said we will have a date by friday. And it will be a couple weeks away.


Jennifer Stanley keep ur head up we all here in reno love u all and will keep the praying on til the day hes better keep me posted plz

July 25, 2011

 We found out that surgery date is going to be Aug 8th..  

Well They changed the surgery date to Aug 9th.. So we are going in for the pre op on Aug 8th... We will see.. We are just waiting for surgery. Packing our stuff again. Well honestly half of my stuff was still packed... Anyways we are 4 days before surgery.. My parents are coming down. They are excited to see timothy again. They seen him on brothers 2nd birthday, July 11th. That was their second time seeing him.. Well timothy is now at 13lbs 13.6 oz.. I am so happy.
They ended up waiting one more day. Aug 10th. So Timothy is going to be having surgery then.. 

 Well I have not wrote anything in here about timothy having a home nurse...
She comes in every week to check on him.. Her name is Amy. She is a very wonderful lady. I sometimes feel I get so excited having someone to talk to that I might over do it. Yesterday I relized for the first time that I dont know much about her. I know the visits are to talk about Timothy but i guess we should know more.. what i do know is she is very nice and understanding. she has been so helpful.. it is great having her around.

August 8, 2011

Today was Timothy's pre-op appointment. The surgeon informed us that his surgery would be pushed off until Wednesday the 10th, but for a very good reason this time. It turns out that there was a very well known surgeon visiting from Canada this last week. Since Timothy's heart anatomy is so complex, the cardiology team presented his case to the visiting surgeon to get his take on things. He has never encountered a heart quite like Timothy's but agreed with the approach that the team has decided on. He also suggested this would be a good opportunity to use a new technology they have been working with in Toronto. All the data and images they have collected of Timothy's heart were sent to Toronto on Thursday and technicians have been working all weekend to construct a 3D model of Timothy's heart. It will arrive at Doernbecher Tuesday morning, so the decision was made to push his surgery back one more day so the team could have time to study and examine the model. This is a first for Doernbecher, really exciting stuff!

Aug 9, 2011

The Doctors and Surgeon got 5 models of timothy's heart. This has made them see a new idea for surgery. So it could be pushed out for another 2 weeks they say. But they are not sure just yet. They are going to call me by tonight and let me know.. This new idea of surgery would be a much more bigger surgery, that the risk would also increase but if they do it and everything goes as planned Timothy wouldn't need another surgery. 
I honestly dont even know what to think about this idea... I dont like the fact aht its a bigger surgery and the things i dread could happen. But then its a surgery that would be his last planed surgery... Honestly at this time I like the idea of a pace maker better. 
I guess that kinda gives me more hope knowing there is something there to continue 
to make his heart beat. But this is so scary either way we go..

So I just got the phone call from the Dr and he said we are going on with the surgery tomorrow. 
They are thinking they will stick with the plane they had on opening him and then seeing what they see. Then get the best decision on what to do.
  • Psalm 147:3
    He heals the brokenhearted and binds up their wounds.
    Aug 10, 2011

    Sasha Oylear...
    well it is time to get up and get ready.. I am truely asking myself Are they going to call and cancel again? i hope this is it. Timothy has waited awhile for this, not like he knows that tho
    August 10 at 4:19am  

    Anna Carpenter... 
    i hope all goes well, i will be praying 4 ya
    August 10 at 5:52am

    Erin Hanussak... 
    I'm praying for little Timothy. Sounds like he has some great doctors.
    August 10 at 7:18am 

    Sasha Oylear...
    Just took him back... They will call me at 9:00am and let me know what they r doing
    August 10 at 7:49am

    Anna Carpenter...
     praying for you guys
    August 10 at 7:56am 

    Trixi French...
     I'll be thinking of you....hope all goes well.
    August 10 at 7:56am

    Blessed Diego Ramirez...
     praying for the little guy
    August 10 at 8:07am · Like
    Sasha Oylear thank u guys so much...
    August 10 at 8:15am

    Marla Fordham...
    he has been in my thoughts and I will continue to send good, positive thoughts his way!!!!?
    August 10 at 8:41am 

    Debbie DeMastus... 
    Hope you get this done so you can quit worrying about it. You've been on a real roller coaster for sure. I'll be praying for him today!
    August 10 at 8:41am 

    Kelly Wallingford...
    good luck sasha. im praying for him.
    August 10 at 9:42am

    Louise Savarese...
    Good luck today..you and your family are in my prayers today. Timothy's pillow will be on its way soon...
    August 10 at 10:00am  

    Sasha Oylear...
    They have opened him up about an hour ago, he is doing really good. They r still deciding the surgery.. i will get a call back at 1
    August 10 at 11:16am 

    Danielle Warden...
    We're still praying!!! He's a strong boy, he's gonna do amazing!!!
    August 10 at 11:23am 

    Marla Fordham... Praying for him!!!
    August 10 at 11:28am 

    Jill Anderson... 
    They are working on him already even tho they're still deciding? I'm confused. Praying for his health!
    August 10 at 11:32am ·

    Crystal Voyles... 
    Praying for him n you, we love you
    August 10 at 11:48am

    Sasha Oylear... 
    they need to open him up and decide.. Timothy has the most complicated heart that the drs have seen. So they have many different plans of what they want to do.. But he has been so complicated.. Its hard to explain..
    August 10 at 11:51am 

    Marla Fordham... 
    ?:( they will figure it out and god will protect him sweetie! Our god is an awesome god and has a plan for him!!!!
    August 10 at 11:53am 

    Debbie DeMastus... 
    Hopefully they will get it all done so he doesn't have to go through this again.
    August 10 at 1:36pm

    Sasha Oylear...
    Trying to keep my mind busy... gosh this is such a long wait... waiting for a phone call. phone should be ringing in just a few minutes..
    August 10 at 1:00pm 

    Crystal Voyles... 
    August 10 at 2:27pm

    Debbie Voyles-Smith Flippin... 
    Praying for Timothy and all of you
    August 10 at 3:25pm 

    Sasha Oylear...
    Surgery is done... There is alittle extra bleeding that they r waiting to stop before they close him. We will see him in a few hours.
    August 10 at 3:27pm 

    Natasha Gonzalez... 
    soo relieved to hear hes doin ok. How are u doing?
    August 10 at 3:32pm ·

    Jill Anderson... 
    Oh my goodness!! So glad he's okay!
    August 10 at 3:37pm

    Crystal Voyles... 
    August 10 at 3:55pm

    Savanna Lewallen... 
    o my goodness i bet that was so scary. so glad he okay. an your one tough moma lol :D
    August 10 at 4:05pm

    Kari Holland... 
    He is such a little trooper way to go timothy
    August 10 at 4:26pm

    Sasha Oylear...
    August 10 at 4:02pm 

    Trixi French... 
    congrats....so glad things went good!
    August 10 at 4:15pm

    Danielle Warden... 
    I'm so happy for you guys!!!! That amazing little man has an amazing Mommy!!!
    August 10 at 4:16pm 

    Debbie DeMastus... 
    He's a fighter...just like his mom!!!
    August 10 at 9:08pm

    Debbie DeMastus TIMOTHY ROCKS!!!
    August 10 at 9:12pm

    August 11, 2011

    Sasha Oylear...
    We got through our first night. Did pretty good.. mike and i have got some sleep. I think its time for me to make milk and have a cup of coffee.
    August 11 at 6:50am 

    Marla Fordham... 
    im proud of you! when he is better I want to come visit:) if thats ok..... he is soooo strong and you are soooooooo amazing!!! I couldnt imagine going through this and the strength you possess is remarkable! ?
    August 11 at 8:58am

    Natasha Gonzalez... 
    Ur sooo strong and such a great mommy we love u n soo proud of u!

    Sasha Oylear...
    Timothy is doing great.. he is trying to move. but he can not just yet.. so they increased some meds.. He is so strong.. i will keep updated when possible
    August 11 at 11:58am 

    Marla Fordham... 
    what a trooper!:)
    August 11 at 12:40pm

    Debbie DeMastus... 
    Are you getting any rest Sasha?
    August 11 at 12:49pm 

    Sasha Oylear... 
    yes i sleep pretty good.. 7 hours. Eating and drinking good
    August 11 at 12:53pm 

    Debbie DeMastus... 
    Well- give that little bugger a kiss for Grandma Debbie!!!
    August 11 at 12:54pm 

    Crystal Voyles... 
    That is so great to hear...
    August 11 at 12:55pm

    Kelly Wallingford... 
    give him loves for me.
    August 11 at 3:16pm 

    Marie Grammer...
     I'm glad he's doin g good... prayers for him continue.. he is a strong boy... :) because he has a strong family.. :) take care...
    August 11 at 7:52pm

    Debbie Voyles-Smith Flippin... 
    So glad to hear Timothy is doing well and that you are also!! Will continue prayers for him to make a speedy and full recovery!
    August 11 at 9:15pm

    S/p Complete anatomic repair with resection of subaortic muscle bundle and subpulmonic conal tissue, patch closure of ventricular septal defect, and fenstrated patch closure of secundum atrail septal defect

    Sasha Oylear
    I am not afraid...
    I was born to do this.
    -Joan of arc
    August 11 at 1:29pm 

    August 12, 2011
    Sasha Oylear...
    he is doing pretty good.. He is prolly going to need the breathing tube for a few more days... The medication for him to sleep dont work to well so he is on another one... I think he says time for me to be wake. :)
    August 12 at 7:52am 

    TeeJae Gonzalez... 
    Glad To Hear:) Yes that lil stinker Is Ready To Wake up,Hes Not Use To Sleepin all day lol...
    August 12 at 8:06am 

    Debbie Voyles-Smith Flippin... 
    Wonderful that he is doing so well!!
    August 12 at 8:16am

    Tiffany Warren... 
    i am so happy to hear that everything went good and that he is doing good i love you guys
    August 12 at 8:23am

    Sasha Oylear...
    Thanks everyone for all your prayers... WE are very thankful for them.
    August 12 at 4:05pm

    TeeJae Gonzalez... 
    And They Still Continue:) Love Ya All,Give The Boys My Love!!!!
    August 12 at 4:08pm

    Debbie Voyles-Smith Flippin... 
    sAME HERE!!!!
    August 12 at 10:05pm

    Debbie DeMastus... 
    Glad he is doing well. When he's all better you need to make a Baker City trip!
    August 13 at 1:34pm

    August 13, 2011

    Sasha Oylear...
    Timothy is doing so good.. Today he is not swollen. He is looking much better. Drs will do rounds in a little while.
    August 13 at 7:07am

    Debbie DeMastus ?:)
    August 13 at 7:40am
    Blessed Diego Ramirez ?
    August 13 at 8:32am

    Sasha Oylear...
    Today.. start feed (breastmilk), wean nitric, up diuretics, wean dopamine
    August 13 at 10:13am

    Dawn Hayes Yay I am so happy to hear he is doing so well(:
    August 13 at 10:42am

    Debbie Voyles-Smith Flippin That is Great news!!!
    August 13 at 5:35pm 

    August 14, 2011 

    Sasha Oylear...
    Today timothy needs to have it calm. I can touch him but no rubbing.. He is having his oxygen go up and down a few times last night so today. I a rest day.
    August 14 at 9:28am 

    Crystal Voyles...
    August 14 at 9:29am

    Sasha Oylear...
    Today i feel like listening to praise and to thank our heavenly father for all he has done.... So since timothy needs rest today. i have the headphones on and listening to music.. SAYING THANK YOU LORD...
    August 14 at 2:56pm

    Marie Grammer...
    ?:).. take care.. hugs..
    August 14 at 2:57pm

    Sasha Oylear... 
    to feel the peace the lord has given me to know timothy is going to be just fine.. IT IS SO AMAZING... honestly i feel as the lord is right here next to him...
    August 14 at 2:59pm 

    Marie Grammer...
    And he has been guiding you all along the way to stay with him and he will heal... :)
    August 14 at 3:00pm

    Debbie DeMastus... 
    He was right next to him all along :)
    August 14 at 5:34pm

    Sasha Oylear...
    Spending the night at home with christopher. Nurse says no changes will happen tonight. So it will be a calm night for timothy. Going back up at 7:30am
    August 14 at 10:10pm

    Allysa Thompson... 
    I'll see you in the morning sis
    August 14 at 10:17pm 

    Monica Albaugh... 
    So great to hear the surgery went well! Praising God with you! I love how God's presence is so evident when we need to feel Him most.
    August 14 at 11:19pm

    Honestly I am not even sure what to say.. I am happy Timothy is doing good.. Sad that today we are trying to let him rest. Although he has been sleeping for the last 4 days. But his oxygen levels keep going down.. So this is why we are keeping him sleeping.. These last 4 days have been ok for me.. My good friend told me that if I do not feel peace it is not God. And God is the one who is going to help me get threw this.. So I have been holding my head up high and know that Timothy is a strong boy and that he is being watched by the most wonderful people and that he is going to get through this and out of here when he is ready, When his body says ok now is the time for me to be moved upstairs cuz I dont need this much care........ When will that be I dont know.. And I am ok with that. No need to push him....

    So brother (Christopher).. This is the first time in 7 months that he hasn't been able to be with brother that much. So my guess is he feels left out cuz of this.. When he comes to visit he enjoys seeing brother and then runs around like he normally does. And this was never a problem but since we are on the 8th floor (PICU) There isn't much room. And it needs to be quite for him.. When we are upstairs he gets to do anything. Upstairs on the 9th floor is for kids who are doing better and dont need as much care.. So the nurses love to see Christopher running around, love the joy Christopher has.. Hopefully we will be out and Christopher can come stay with us.. He misses me and I sure miss him..

    August 15, 2011
    Sasha Oylear...
    So timothy was just awake for 7 minutes and everything went real good...
    August 15 at 11:43am 

    Marie Grammer...
     awesome!!! :)
    August 15 at 12:13pm

    Sasha Oylear...
    Another joyful moment of timothy awake... He is just so sweet.. Im so happy to see him awake. And he is off the nitric.
    August 15 at 6:27pm

    TeeJae Gonzalez... 
    Yah Thats Great...Im So Happy That Hes Doing So Good, Give Him Kisses For Me And Tell Him Auntie Loves Him So Much 
    August 15 at 6:31pm

    Anna Carpenter... 
    how long is he going to be there?
    August 15 at 6:38pm

    Sasha Oylear... 
    in the pediatric icu for about another week. then a week or two on the floor
    August 15 at 8:27pm

    Jennifer Stanley were still praying for him!!
    August 15 at 6:58am

    Sasha Oylear...
    had a very yummy dinner, Thanks Danielle Warden.. Timothy received a pillow from Heart Hugs.. She made Timothy his own little pillow.. I will have pics up once he is awake and he doesn't have so much on him
    August 15 at 8:33pm · 

    Jennifer Stanley... 
    awwwwww hows he doing????weve been praying for him........ love u guys get my number off my info and keep in contact with me k cousin
    August 15 at 8:44pm 

    Debbie Voyles-Smith Flippin... 
    Im glad to hear that Timothy is doing good! And it also sounds like you all are doing well!!!
    August 15 at 9:09pm

    Louise Savarese... 
    Yeyyy you got it!! I think it's the cutest one I've made yet!!! =) ?
    August 16 at 4:25pm 

    Sasha Oylear I love it... It is so beautiful.
    August 19 at 5:04pm

    August 16, 2011 

    Sasha Oylear
    Timothy was weaned down on the breathing tube from it breathing 30 breaths a minute to 25. He is at his full feed of 25ml of breastmilk. & finally pooped :)
    August 16 at 7:19am

    Marie Grammer I hope this all means good stuff for him.. Keeping him and you in my prayers..
    August 16 at 9:47am 

    Sasha Oylear
    Just gave timothy a bath, changed his bedding, and in a little while i get to hold him.
    August 16 at 9:14am 

    Marla Fordham Bless his heart.... and yours as well♥
    August 16 at 10:38am

    Marie Grammer so totally awesome!!!
    August 16 at 1:45pm

    Sasha Oylear
    I been holding timothy for an hour :)
    August 16 at 3:04pm 

    Sasha Oylear
    Held timothy for 2 hours... Boy was it nice... :) I loved it.. It had been 6 days since i last held him

    TeeJae Gonzalez Like
    *Truely Blessed*
    August 16 at 4:03pm 

    Louise Savarese Aw!! So sweet =)
    August 16 at 4:18pm · 

    Jennifer Stanley awwwwww
    August 16 at 4:44pm 

    Christy Cantrell-Olson I want you to know your the mom us other moms thrive out to be like... yes timothy is strong but he wouldn't be so strong and a fighter if he didn't have a mom like you Sasha...your the reason he fights so hard and makes it through everything and I want you to know your a amazing mom sasha...keep up your amazing work
    August 16 at 5:09pm 

    Sasha Oylear Thank you so much Christy Cantrell-Olson. It is very nice for you to say that... I just do what i have got to do to make sure my family doesn't fall.. even though times get hard for us and mostly for timothy i know he is going to get through it. :) I have to say without faith i woouldn't have gotten this far.
    August 16 at 5:32pm

    August 17, 2011

    Sasha Oylear
    I am just so happy right now.. Timothy has been breathing on his own and has been for a couple hours. Breathing tube will be out around noon..
     August 17 at 7:07am

    Marie Grammer awesome!!!
    August 17 at 9:07am

    Sasha Oylear
    Oh i belive there are angels among us. Sent down to us from somewhere above. They come to you and me in our darkest hours.
    August 17 at 10:13am

    Sasha Oylear
    Without faith i dont think we would have gotten this far.........
    August 17 at 11:25am 

    August 18, 2011 

    Sasha Oylear
    Breathing tube is out... :) He is doing pretty good... He is on a nasal canula high flow room air.. It is good to hear his little voice.
    August 18 at 8:37am

    Debbie Voyles-Smith Flippin Im so glad that he is doing well! I just realized that I havvent even met Timothy yet...I so want to hear his lil voice
    August 18 at 8:42am

    Sasha Oylear it is the sweetest voice every...
    August 18 at 8:52am 

    Mariah Aldrich thats good to hear im glad he is doing ok
    August 18 at 8:55am 

    Marie Grammer Such great news.. Thanks for always keeping us all posted.. He's a strong little man.. :)
    August 18 at 9:37am

    Natasha Gonzalez Yay Soo Happy Hes Doin Soo Good!
    August 18 at 12:48pm

    August 19, 2011

    Sasha Oylear
    Been up since 6. Timothy has a spong bath, got weighed, i held him. Today is already a busy morning.. hope everyone has a good day.
    Like ·  · August 19 at 7:18am 

    Debbie Voyles-Smith Flippin So glad to hear that everything is going so well! Hope u all have a great day
    August 19 at 7:59am

    Sasha Oylear it is going great.. He is up smiling and playing
    August 19 at 8:13am 

    Dawn Hayes That is such wonderful news(:
    August 19 at 9:23am 

    Christy Cantrell-Olson Yay that's awesome sasha you keep up your hard work for him and he will keep it up for you...man you and him warm my heart everyday I read your post...YOUR AMAZING SASHA
    August 19 at 9:36am

    Sasha Oylear
    we are being moved upstairs.. should be out of the hospital by the end of next week... Thanks everyone for your prayers.. It has really helped us to see all the support we have.
    August 19 at 10:09am

    Crystal Voyles That is sooo awesome, been thinking about you guys alot. I am so happy that things are going as well as they are. I went in the boys' room the other day and seen the dark spot on the carpet and started laughing....LOL...love you all!!
    August 19 at 10:10am

    Sasha Oylear lol... Love you.. And Crystal we are very thinkful for your help and for helping me get ready for my wedding an hour before.. :) I hope you never forger how much we apprecaited it
    August 19 at 10:14am

    August 19 at 10:28am 

    August 20, 2011

    Sasha Oylear
    Be out by monday.... Timothy is playing
    August 20 at 11:45am

    August 20 at 11:54am 

    Sasha Oylear Me too :)
    August 20 at 11:55am

    Tiffany Warren congrats sasha im so happy things went well and that he is recovering so quickly i love you guys
    August 21 at 12:26am

    Sasha Oylear love you too. Thanks
    August 21 at 9:06am

    Sasha Oylear
    I am sure looking fwd to spending some time with christopher.. I sure do miss him. 1 or 2 more days
    August 20 at 5:45pm

    August 21, 2011

    Sasha Oylear
    Waiting for the pharmacy then we r heading home.
    August 21 at 11:12am

    Danielle Warden I have something for the boys...should I wait til later this week when you're settled at home to bring it by?
    August 21 at 11:31am

    Kari Holland Yay that's great news!
    August 21 at 11:50am

    Sasha Oylear whenever you would like..
    August 21 at 12:25pm

Marie Grammer so cute...  so cute and so precious..
August 18 at 10:04am

Sasha Oylear he looks like a normal baby.. the lighting sucks alittle but he looks like a 7 month old should. minus all the tubes and wires 
August 18 at 10:05am 

Kari Holland What a strong little man we love him and you guys we want to come see him
August 18 at 10:37am

Sasha Oylear come up anytime
August 18 at 10:42am 

Jill Anderson im soooo glad hes going soo good!!!!!!! my love and heart goes out t
August 18 at 10:52am

Kari Holland K I'm babysitting today tell late but Friday 4 sure
August 18 at 1:26pm

Sasha Oylear ok.. that sounds good... oh well there is a sign outside the door before you enter the picu that says no there kids can be here.. (Well it says something like that)

August 18 at 3:30pm

Kari Holland Awwww you guys look beautiful& he looks so big
August 18 at 11:44am

Kari Holland Soooo beautiful
August 19 at 12:45pm 
Marie Grammer That is great news.. he looks so good .. 
August 19 at 1:24pm

Jennifer Stanley awwwww im so glad everybodys prayers helped!!! thank u everybody who helped my cousin get thru this keep ur faith sasha god has it covered!!! xoxo
August 19 at 1:48pm 

Sasha Oylear yes he does.... Love you too..
August 19 at 1:54pm 

Gee Grende awesome congrats hope all goes better
August 19 at 2:18pm

Sasha Oylear thanks.... He is getter better faster then expected.
August 19 at 3:13pm 

Gee Grende good
August 19 at 3:16pm

Mariah Aldrich awsome im glad hes doing great. love you sasha
August 19 at 3:17pm

Sasha Oylear love u to mariah..... 
August 19 at 3:30pm

Scott Lansdon That is great Sasha, I am happy that everything is going well.
August 20 at 8:27am

TeeJae Gonzalez aww Love That Face Too,So Cute:)
August 19 at 4:02pm 

Reanna Taylor He looks like he's feeling better! So stinking cute!!kisses
August 19 at 4:05pm 

Sasha Oylear He is.. He just went back to bed at 2:00 and he has been up playing since 5
August 19 at 4:06pm

Louise Savarese Too cute!
August 19 at 4:33pm

Kari Holland Sweetest angel face I have ever seen
August 19 at 4:47pm

Crystal Voyles SO HANDSOME
August 19 at 8:42pm

George Voyles oh this picture is so sweet
Sunday at 4:28pm

Oct 10, 2011

Timothy took a month before he gained even a pound. He is now doing better. Got his first bottom front tooth when he was 8  1/2 months old. He is now 9 1/2 months old and has a top tooth coming in.. Timothy is eating about 900ml a day of breast milk and has started to eat about 8 oz of baby food a day... We are hoping to work him up to what the average baby drinks and eats. That is about 20oz of breast milk and baby food (about 6 times a day) so some say.. Timothy is sitting himself up when he falls over. He is also starting to army crawl. He is still very much attached to his mom and every time I put him down if he is not sleeping he will be fine for a minute or two and then if he sees me he cries for me.. It is so sad to see him always wanting me, but momma needs to do things to. When I pump (every 3 hours) that is the only time i get to enjoy without kids. lol...
So Timothy is supposed to have a sedated echo  next month and we will see how everything is looking. Im sure it is looking good. He is so energetic, it seems he is liking this new change.

Spending Mom & Dads anniversary at a hotel in the pool and hot tub

Big smile




about to go to the beach

First time at the beach

Hanging out with big brother

Nursing again (Sometimes)

Addisyn & Timothy

Timothy at the zoo
At the zoo with cousins

Oct 29, 2011
Timothy is growing so much. He claps his hands, he crawls, he can pull himself up and he has 4 teeth. He is eating lots of regular (high in fat) foods. He is still on breast milk about 25oz during the day and on a night time drip for 11 hours of 42ml an hour. Timothy is now at 16lbs 6oz he is still going slow on his weight gain but he is getting there.

At the pumpkin patch

learned how to pull himself up. 9 1/2 months old.
He also knows how to crawl at 9 months old
Pulled out his feeding tube sometime in the night. Had to go to the ER
so they could  put it in cuz it was pretty much closed/ Oct 25, 2011

Finally in after 2 1/2 hours/ Oct 25, 2011
Pretty little boy/ Oct 28, 2011

Oct 29, 2011

Oct 30, 2011/ Going to the zoo for trick or treating

Oct 30, 2011/ at the zoo
Oct, 31, 2011

Timothy pulled out his g-tube sometime between 1am and 4:45am.
 We called the Dr. at 4:30 and the Dr said she would call in a few hours after talking with other drs. 
So she just called around 9:15am and said come in...
They cant get it in. so they're deciding if he needs surgery to get it back in or if they can keep it out.

They got it in but now his feet are red and swelling...

After about 20 minutes the swelling went away and he is better...

Oct 31, 2011 Going trick or treating

Nov 3, 2011
Timothy is not feeling good.. I woke up to the sound of him throwing up. His blankies are soaked.
It seemed later in the day timothy was feeling better. Not getting sick as much

Nov 4, 2011

November 4, 2011 Taking timothy to ohsu.. He is throwing up a bunch and not eating 
We are heading home. Not sure why he has been throwing up.. He got a prescription to help him with nausea. After leaving hospital i only had to give him one more pill and he didn't get sick again..

Christopher, Chace, Timothy Nov 9,2011

Nov 6,2011 

Nov 14,2011 Sitting in bubba's chair

Aunt Kari did his hair. Nov 16,2011

Nov 16, 2011
So I counted out how much milk I make at my lowest pump supply and im at 17,248.. 
This is from timothys birth tell now..
 I have feed 3 babys, Timothy, (my cousins baby) for just a couple weeks and the other baby since march

Nov 17, 2011
awake.. got to get ready for Timothy's sedated echo today... We will get results tomorrow..... 
It sucks how long Timothy has to be off of food.. We have to take him off at 8am, Echo is at 2:30pm and that takes an hour or two..

Nov 18, 2011
Echo looked amazing said Dr Kelly. Timothy goes back for echo & clinic visit in 6 months. He needs to start and stay on asprin until next echo to keep his blood from his heart from cloting and going places it shouldnt, like the brain.

Nov 21, 2011... Loves loves loves food
Nov 21, 2011

Nov 22, 2011

Timothy is 16 lbs 2.5 oz

 Nov 29, 2011 we moved in to our own appartment. 3 bedroom.

It is just steps away from my brother in law and his family.

It has been so much fun to be able to see them alot more now..

The girls love to play over here and they make us things all the time from paper or anything that is around

it is sooooo cute.. I love it. It has been very very good..

Christopher loves to play with Chase but they always fight. :)

Nov 30,2011 Taken a sink bath in our new place.

Dec 2, 2011
Timothy has learned a new word (baba, meaning bottle)... 
This is now his third word. Im so happy with the way he is catching up & so are his Dr's.... 
Oh and he loves to make noises (kinda sounds like the boy off of the shinning when he says red rum) .. Its cute & creepy.

Dec 12, 2011. Things have been crazy

the last few months. Papa (my father in law) is getting sicker.

He was diagnosed with state 4 lung cancer Dec 16th, 2010

He has been getting weaker and weaker the last 3 months, doesn't eat much, cant move,

he mostly just sits on the couch. Someone has to stay with him at all times,

He falls alot. :( So we have been enjoying our time with him...

Dec 3, 2011 

Climbed out of his high chair and got on the table to play with the tree.

December 22, 2011

Hello all.. Just wanted to do a little update.

Amy (Home Nurse) came over  December 20th to do a weight check

Timothy weighs 16lbs 12 oz

28inches long.

Since this is not much since his last weigh check

we are going to have him on some breakfast essential,
in hopes that he can gain some more weight faster..
Amy said it could be because of the whole that is still in his heart,
that they left open to help with his pulmonary hypertension.
That with this whole may keep the heart beating alittle more and burn calories..
When Timothy goes in to his P.C.P we are going to see if  he should be put on pedia sure??

Timothy is starting to walk.. He will take 2 or 3 steps and then fall..
He will do this atleast once a day.

December 31, 2011

Today is Timothy's 1st Birthday.. Technically not tell 2:39pm

But at Midnight I told him Happy Birthday and He said Thank You....

 Gosh I love how big he is getting

Natasha Gonzalez Cant believe hes 1 already. Tell him Auntie TahTah will be calling him later.
Sasha Oylear I will let him know.
Stephan N Danielle Phillips It's so cute Marleigh will actually say "Bless you " after one
sneezes :-)
Erin Hanussak Happy 1st Birthday Timothy! Glad to hear that he is doing so well!
Dawn Hayes Tell him happy Birthday from all of us please (-:

Ana Curtiss Happiest Birthday wishes sent to Timothy on hims 1st Birthday we love him tonz and tonz!!

TeeJae Eaton Happy Birthday Aunties Handsome Boy!! Love You So So Much:)
Jenifer V Brown-Stanley Happy birthday lil guy!
Sasha Oylear Thanks all.

A year ago today was the,most wonderful, scary thing that happened. Timothy come into our world & gave us the most wonderful roller coaster ride..
Im so proud of him. And most of all I want to thank god for keeping Timothy with us & being with us when in need and we didnt know what to do.
Debbie Voyles-Smith Flippin Awwww Happy Birthday Timothy!! Love you all

Allysa Thompson Happy Birthday Timmy Auntie Loves  YOUUUU!!!!!!!!!!!!!@#$%^& 
Thunder Bright Happy birthday!!!!! ♥
Marie Grammer Happy Birthday to Timothy!!

Edited By Mom

Edited By Mom

Edited By Mom

Edited By Mom

Edited By Mom

Edited By Dad

Edited By Mom

From kiddie kandids

From kiddie kandids

From kiddie kandids

From kiddie kandids

From kiddie kandids

January 1, 2012

Although Timothy's Birthday is December 31st we celebrated it January 1st.
It was so fun. We went to out of this world pizza. 
We also celebrated his cousin Chase's 2nd Birthday.
It was so much much fun. There was lots of kids there and lots of fun..
Timothy enjoyed his birthday, got lots of presents and ate lots of cake.

Birthday Party

Janurary 3, 2012

Timothy had appointment with home nurse today. He is now 17lbs 6.5 oz. He has gained 10oz in 2 weeks.. Im so happy. This means the Carnation breakfast is working. Tomorrow we will start adding a 5oz bottle of whole milk to take the place of a bottle of breastmilk.. Timothy eats 3 meals a day, 2 snacks and about 20oz of breast milk a day. Timothy is 70% walking on his own. He is talking alot more and loves to play. We are so greatful for him and how well he is doing.

Marie Grammer Totally awesome!!
Allysa Thompson Aw I Love Him! My Little Nephew Is Getting So Big And Strong :D
Leslie Michael GOD is good!!
Sasha Oylear Our God is good...
Debbie DeMastus amen!!

Jan 7, 2012
Timothy is now about 75 % walking.
He is getting so big.. I am so proud of him. He is the cutest little guy ever.
He has the most amazing smile. And he does some weird thing with his nose when he smiles.
He has 6 teeth. 4 on top and 2 on bottom.

February 2012

The month of February is National Heart Month. The week of February 7-14 is Congenital Heart Defect (CHD) Awareness week.. 

*** Congenital Heart Defects are the #1 birth defect worldwide

*** Congenital Heart Defects are the #1 cause of birth defect related deaths worldwide

*** About 1 out of every 100 babies are born each year with some type of Congenital Heart Defect in the United States (approx. 40,000/year)

*** Nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms of childhood cancers combined, yet funding for pediatric cancer research is five times higher than funding for Congenital Heart Defects

*** Each year worldwide 100,000 babies (under one year old) will not live to celebrate their first birthday

*** Each year in the United States approximately 4,000 babies (under one year old) will not live to celebrate their first birthday

*** The cost for inpatient surgery to repair Congenital Heart Defects exceeds $2.2 billion a year

*** Of every dollar the government spends on medical funding only a fraction of a penny is directed toward Congenital Heart Defect research

*** The American Heart Association directs only $0.30 of every dollar donated toward research. The remainder goes toward administration, education and fundraising efforts. Of the $0.30 that goes toward research only $0.01 goes toward pediatric cardiology for CHD

*** Though research is ongoing, at least 35 defects have now been identified

*** Although some babies will be diagnosed during gestation or at birth, sometimes the diagnosis is not made until days, weeks, months, or even years after. In some cases, CHD is not detected until adolescence or adulthood

***It is a proven fact that the earlier CHD is detected and treated, it is more likely the affected child will survive and have less long term health complications

Feb 11, 2012
We have had alot go on since I last updated we have had alot happen. 
Timothys Papa (His Dads, Dad) Had Got really sick and Passed away on Jan 14, 2012.
We had been with with Papa ever sunday for many months now. We would do a Sunday dinner.
It was our time to take away whatever we was doing in our life and go see him.
It was our time to spend with him and make sure we got to have the time with him before he got really sick.
Well when December come around Papa started getting really bad and we new we didn't have much more time with him. January 8, 2012 Papa's nurse had come to see him and she told us that it was hours to days away.. His 2 sons, 1 daughter and all the spouses and his grandchildren come to be with him. We later had other family come to say good bye. 
I was taken care of Pats medication. Maken sure he got them when it was needed. 
Every 2 hours I would go to him and tell him I had his medication for him and would have to give it to him by mouth. He was to weak to do any of it own his own. He sleep most of the time. It felt really good to help him and sit next to him and talk to him when he was awake.
At this point we new that it was going to be his last day very soon. 
January 13th Papa slipped into a coma early morning. We continued to do what we could for him, keep him on his medication and tell him how much we all loved him. He passed away January 14th 6:28am....
We had his service January 29th.. This would have been his 60th Birthday.
We are all trying to just get by. Do the best we can,
 and know that he is with us in our hearts and he is in a far better place up in heaven.
Christopher has a hard time with Papa being gone. He cries for Papa every time he sees the dream works animation he says Papa is the man fishing on the moon...
OK so moving on before I start getting to sad.

Timothy is at 17lbs 4oz.. 2 weeks ago.
He has been having a hard time eating for about a week now.
I have been feeding him more at least 1 time a day through his feeding tube for the last couple days. 
I'm thinking we are going to have to use it for a little longer then what I was hoping.
But I know just how important this is for timothy to have and I think its a very good way to make sure he gets what he needs... I will be talking to his home nurse when she comes over January 16th,
and see what she thinks we should do.. Other then that Timothy IS WALKING...
Omg he has been walking all over since just after my last post.
He climbs the stairs and he crawls down them. He is just SO BIG. 
It has been so amazing how he has been growing so well..

Feb 18, 2012
Timothy had his appointment on the 16th.
Amy checked his weight and Timothy will be keeping his G-tube for a little while longer. We are soon going to have to start PediaSure cuz he has lost intreast in eating alot of foods and is not gaining enough weight. He is 17lbs 13oz. Still under the 3rd%. 
We are waiting to hear back from the nutrition specialist up at Dornbecher,
 to see if this is for sure what we should do. We have tried high fat foods and nothing really works.
So this is all we can think of. Im thinking what will be best is if we just put this through 
his tube so this way we do not have to worry about him wasting it, or losing the bottle.. 
He is good at hiding them.
Timothy has 4 teeth up top and 3 on the bottom (the 3rd is not all the way through). 
But it is mostly.. He is so big. He climbs up the stairs great and when he slides down it,
he lifts up his left side so his G-Tube doesn't get stuck on the stairs, (Or whatever reason he is thinking).
Timothy has been giving kisses for about 2 weeks now. He says MAUH when he gives them.
It is the cutest thing ever.

Christopher and Timothy are 2 very wild boys.. 
The mess that 2 little boys can make is crazy.. I never new this much stuff was available for them to play with. No matter how  much toys I put away and hide from them the find more things.
It is so fun and crazy at the same time.. I think the boys only go about 10 minutes without yelling at the other.... Timothy has such a voice. He screams this sound that I cant even explain.
It is his sound he makes when you are not giving him what he needs.
Christopher picks on him all the time. Christopher thinks Timothy is supposed to give all his toys to him. They hang out a lot, its mostly fighting and A LOT of screaming. 
Christopher has such sweet moments when he just wants to help change Timothy's Diaper or get him his bottle, give him a binkie, bring him a blanket or find his bunny for him.

I didn't know if we was ever going to see these day. Most of the time I tried to think positive and know that we was going to but this just isn't always so.. So MANY people lose their children to CHD and I was scared that we may be one of them. No matter how much I prayed and asked God not to take Timothy after walking Timothy down the hall to the O.R. and kissing him goodbye, Handing him to the nurse, I knew that it wasn't about what I wanted or what my husband wanted, or any of our family. It was about what God wanted. This may have been to keep Timothy with us for a short time and then call Timothy up to heaven. 
After they took Timothy and we walked back down the hall and went into the waiting area. I prayed that God would be with Timothy and I had a sudden feeling of peace. I just new at that moment everything was going to be ok. That my boy was going to make it.. This was the spirit of the lord telling me he is going to be ok.. He was right. Timothy come out better then expected. didn't have to have a pacemaker or any more scheduled heart surgerys. It turns out that Gods plan must have been much more for Timothy. Each trial we put is in is only a test, it is only a walk down the road to see what path we will take, a way for us to get closer to God. I believe SO much more now then I ever did.. Having to go through what Many parents of CHD children go through has only brought me closer to the lord and has opened my eyes.... Timothy isn't 100% better and he wont ever be. We will always have to worry about sudden things happening to his heart. But to be honest going from possibly a pacemaker and/or needing 6 heart surgeries to only the one. That is an incredible miracle from God. 
I will stop going on and one.. This is it for today..

No comments: