This is was a HUGE day for us. In the beginning and through out the year we didn't know if we would have this opportunity to celebrate this day with Ty. Ty has been such a blessing to so many people and given hope to families in similar situations. I won't be writing much, I am going to let the pictures speak for themselves. I just want to say 'thank you' to everyone that has prayed, loved and supported us through out the year. God has blessed us beyond measures and we could not have done it without you all. Thank you, Thank you, Thank you.
I know its been a while, but I have been crazy busy. A lot has happened since the last post, Ty was in excruciating pain and had to have a diaphragmatic hernia repaired (which is where a piece of his bowel was going through his diaphragm into his chest area). He had a hard time with this one because he had to be on hemo dialysis while his belly healed up, a lot of blood lose, pain med withdrawals, bloody stools and a lot of stress. We were in the hospital for 3 weeks with that one.
Now we're in the hospital due his blood pressure being at stroke levels. I think the highest I saw it was 235/128 (normal 120/60). He had to be air lifted to the hospital in Winston, I think I air lifted my car to Winston also;) oops!
Ty is now 10 months old and still behind physically. He still can't sit up, roll over and he really can't hold his head up the best. He hasn't been himself for about 8 weeks now with the surgery and different complications. I don't want to be around people we know with other babies because all I do is compared Ty to them, I know it's not fair to him but I can't help it. Oh! and I've gotten my tears back. There for a long time I felt so cold because I couldn't cry, when no one is looking that's all I do. I envy the parents with normal babies wishing Ty could be normal and not have to go through all this pain, IT'S NOT FAIR. That's what I keep saying, IT'S NOT FAIR. Why us God??? What did we do so wrong.
With Ty being in the hospital this time. I think back and wonder, "well if I went to church Sunday maybe he wouldn't be in the hospital" or "if i didn't let that curse word slip maybe he wouldn't be in the hospital". My temper has gotten worse, depression has set in, questioning is never ending. I hate feeling this way. I try to enjoy every moment I can get with Ty and Larry because I don't know when that may end. I hate that too, having to worry that I may not have forever with my lil guy. I know everyone has to worry about that but We do more so having a special needs baby. This is the hardest thing I have ever had to go through, going from being pregnant and not knowing what the future held. Planning on having a normal baby and when that baby gets here your world crashing into a million pieces. Don't get me wrong Ty is the light of mine and Larry's life and we may not deal with it the way everyone thinks we should but we're dealing with it the best way we can.
Why God? Everyone asks that at some point of their lives. We question and ponder, think about it over and over again. The things is, we may never know WHY?
Larry and I are normal human beings and we are not perfect but we try our hardest to do the right thing and try our hardest to be the best parents we can be. Ty is a gift, a special gift and I would trade him in for a normal baby but I wish his life was easier and I wish I could take all of his pain away from him. I wish I was the one to have to go through all the surgeries and worries for the rest of my life, rather than him.
I am not a English major so this is not perfect grammar or perfect sentences or perfect whatever else. These are my feelings and emotions typed out real quick without even thinking about it. So don't judge, just love. Thank you for reading.
I went to the Womens Brunch on Saturday. It was like Mrs. Debbie was speaking directly to me and it was something I needed. Needed for my sanity.
As I grew up, I know God has taken care of me. I've always said "God's Grace, Daddy's Prayers". With everything that could have happened to me and with all the situations I grew up in, God took care of me. Now with way different circumstances, my baby, something I never even thought would happen. You go to the hospital, in labor or being induced, you expect to have your baby and have him beside you with your family around staring at him and adoring him. Things went way different. Christmas day Ty had his first surgery, Egh! Two days later, second surgery. Ahhh! So many nights of crying myself to sleep, wondering why? What did I do so wrong for my baby to suffer? Why me God? Why do you hate me so bad for my baby to suffer? Let me take his pain. Something so precious and sinless, how could you? That and more went through my head, sometimes still do (to be honest). Never thought I could be so mad at God. We couldn't even pray, we didn't know how to pray all we could pray is for what we wanted. We really did want God's will to be but then again I wanted my baby's kidney to start working and him be healthy and to not have 8 stinking surgeries. What God would do that to a baby? But as soon as I said that (in my head) I thought, well God did give his only son to die on the cross for me and my sins and Ty's sins. (i was crying before i even thought of this and crying even more after i thought of it) It was like a smack in the face, WOW! I felt ashamed but still mad at the same time. My emotions everywhere.
God has been so good to us. So many people encouraging us and loving on us. Family being there for us no matter what it took. God leading and guiding every decision and everything happening even if we thought it was bad. God watching one of His miracles. With Ty having eight surgeries his fourth surgery hit him the hardest. He had four different surgeries combined at one time, which being the nissen, g-tube, colostomy reversal and appendix removed (which we didn't know about). That whole night he would stop breathing, his heart rate would drop and they would have to bag him and help him breath. Of course, we stayed with him that whole night but God was there sitting right there with us and us knowing he would be okay.
Just thinking back to every episode of our hospital life.
First surgery on ChristmasGetting Ty's numbers strait Getting rid of the peritoneal infection 1, 2, 3, 4, 5, 6, 7 & 8 surgeriesContinuous heel sticks, IV's Spinal tap Heart issues, etc.
Ty bounced back from every surgery and infection. There were times we wanted to give up but you look in that small bed at that small body that God gave you to take care of. He gave us Ty for a reason knowing we could stand strong for him and take care of every need, not know how but knowing that God will guide us and never leave us. Through all of this Ty has been a fighter, he fought his way through the hospital, doctors and he didn't give up on us.
I say everything to say this, God puts us through life experiences to get us through the next stage of life experiences. We may never know the reasons but do know that, God has not brought us this far to just drop us off now.
Since we've been home we have tried as much as possible to make as many memories with Ty. Our first big outing being, hiking Mount Pisgah.
He's pooped: )
Being able to be with my husband and my son and not even thinking I would be able to get this moment was awesome. So even though we have had a tough time, God has been faithful, He's been good and right beside us every move we make.
Here's a video not of Ty but another Miracle. Hope this is of some encouragement.
This fundraiser wouldn't be happening if it weren't for the Truesdale's. Shirley came to me wanting to help us, knowing what we would be going through by getting a kidney for Ty and all the cost included. Shirley's husband Kirk is needing a liver transplant and has been waiting for some time.They have had a long and hard road and God has provided for them in mysterious ways and they continue to have the faith that God will provide. So please join us in the fight for both of our loved ones.
(Click here for Ty's Story) Fundraiser Promotion is 2 hours of unlimited play for $15 (cost normally is $24.99) A portion of the cost will be going toward the fundraiser. All donations are welcome. We will be raffling items on the day of the event. If you want to help in any way just email me at meganrgrobertson@yahoo.comor message me onFacebook
Kirk, Shirley & Kayla Truesdale
Their Story Kirk is 49 years old. He is a loving husband and father to a beautiful 12 year old daughter; who loves her daddy deeply, and is very invested in his fight for life! Kirk was diagnosed with hepatitis and advanced liver disease 5 years ago. he has been fighting ever since. His only chance at survival now is a liver transplant. He is awaiting a liver through the UNOS National Transplant Listing service. He has been waiting now for over 2 years.
Kirk is unable to work and relies solely on a small disability check and his wife's income. Because of the enormous expenses associate with this illness, hiss transplant will not be possible without your financial help. The cost of this transplant is very expensive, even with insurance. Just the co-pays on the required immunosuppressant and anti-rejection medications following his transplant will run $1500-$2000 a month for the rest of his new liver's life. This does not include the possible costs of additional medical complications. Each year he has been in the hospital 6-7 times for the related medical issues.
Because Kirk is seeking his transplant from Emory University Hospital in Atlanta, GA and we live in North Carolina; the travel and lodging expenses, lost work time for his wife and care for his daughter become an increasing burden too an already emotional and costly situation. He must travel to GA constantly for treatment and once Kirk receives a liver, his family will need to relocate their entire lives to GA for 6-8 weeks. They have already lost their home and their bills continue to mount. You can help!
Family and friends of Kirk Truesdale are raising money to pay for uninsured medical expenses associated with his liver transplant.
"No matter how big our storms are, we must have Faith in our Life that God never leaves us; without Faith we could not travel this journey. Without His strength we could not continue this fight. May God richly bless you as He has richly blessed us!" - Kirk
Thank you so much for taking the time read!
Thank you so much for taking the time to read. We love to get sweet & encouraging comments too; )
When we arrived at Brenner's Children Hospital the charge nurse "Carol" noticed a hole in Ty's ear. She pointed to the hole and said "ah, that's related to the kidneys". Well, with it being 4 a.m. and still in shock. I didn't have anything to say.
When the genetics specialist come by to talk to us he mentioned that Ty might have B.O.R. Syndrome. WHAT? Branchio-oto-renal syndrome is a dominant gene and can occur 1 in 40,000 people. Some of the symptoms have been reported to be hearing loss, ear pits, deformed ear, ear tags, branchial (neck) cyst or fistulas, kidney problems and many other symptoms have been reported but are not common. Individuals with the syndrome do not have every symptom you. It varies with each individual.
In Ty's case, he does have the syndrome. He has 2 out of 3 areas that are affected. He has mild to moderate hearing loss, pits in the ears (as seen above), was born without one kidney and the other a third of the size it should be. As far as anything being wrong with his neck nothing has been detected. Thank you God!
So now the question is how did Ty get this. Well, I (Megan) have symptoms of syndrome. I have the holes in both ears and had a cyst removed from my neck when I was young. As far as any kidney issues, none. My brother has the same symptoms as I and we never knew anything until Ty's issue come out.
So the chance of this happening again is 50:50. How do we prevent it? Either we don't have anymore babies or IVF (In Vitro Fertilization).
Being a new mother and finding out that your son has a syndrome and that he received the syndrome from you, that messes with you mentally. I know I couldn't help it but knowing I could have prevented it, makes me so mad at myself sometimes. There were times I would whisper in Ty's ear "I'm so sorry, Mommy is so sorry" and tears falling on his face. That will probably be one of the hardest things to get over but I'm getting there, slowly but surely.
It's just one of those things that "in time" will heal itself. We know God is in control and He gave Ty to us because He knows we will take care of him no matter what it takes. We wouldn't return him for a healthy baby any day because he wouldn't be the same. God has a plan, we may never know what it is but all we can do is be faithful and try our best.
Finally success at starting the blog! :) We wanted to tell our story someway, somehow, so what better way than by starting a blog.
For those who don't know us we are Larry and Megan Robertson. We wanted to create a blog completely devoted to what's consuming our lives right now, and that would be our son TyDouglas Robertson. He is God sent, and the most amazing little baby boy. Let me tell you why...
I had the best pregnancy anyone could ask for. I was only sick for 8 weeks (no throwing up, just sick all day regardless of what I ate or didn't eat) and only gained 25 lbs. When Ty would move around he was so gentle. He would get hiccups constantly and move when he heard my dad (his poppee) sing. No joke! Ty was due on my birthday January 7, 2010 but decided to come early. I went into labor 3 weeks and 3 days early. Ty was born December 16, 2009 at 2:19pm. He weighed 6lbs. 9oz. As soon as he was born they put him on my chest for maybe 3 seconds and then took him away. Well, I thought it was just to clean him up. That wasn't the case. Ty wasn't breathing like he should, so they had to intubate him. My doctor and my clients (I am a hair stylist) that are NICU nurses fore-warned me about this situation. They said it often occurs with boys born early- premature lungs. So the NICU team came down and gathered everything up and away they went with my baby! Larry looked at me and as our eye's met, I could tell that he was torn on what to do. Of course, he stayed by Ty's side. While they were gone, the doctor discovered that I was having some complications of my own. My complications were quickly addressed and I was officially a Mommy!!!! REST, REST, REST!!!
While Larry was with Ty I got some much needed rest. I finally woke up and just remember it was around 7ish and thinking my baby should be here with me so of course I was very emotional. I didn't want to see anyone I was so depressed (ALREADY!). I was so ready for my legs to wake up so I could go see my Ty and when I finally got to see Ty for the first and all I could do was cry, I couldn't hold him and do all the new motherly things that every mother dreams about.
(First time I got to hold him)
Ty was born on a Wednesday, and that Friday was the first big snow of 2009. With travel conditions what they were, the hospital gave us a room to stay in until Ty was able to go home. That week seemed like the longest, hardest, and most emotional week ever. Day by day, Ty got better and better. He progressed like a champ. We were learning everything about being new parents and enjoying every bit of it.
(First time Larry held Ty)
Tuesday, December 22, I was going back to the room and passed a couple weeping uncontrollably. The mother was on the phone and I heard her say that the baby's chances didn't look good. Of course, I wept the entire walk back to the room thanking God for how blessed were to still have Ty, regardless of his situation. Needless to say, Larry and I had a very heartfelt night Praising God and Thanking Him for our little blessing. By this time, we knew that we were getting very close to going home.
God only knows what tomorrow holds. Wednesday, December 23, is when our roller coaster started going downhill. The first of many days to come of pure torture as new parents. They did an ultrasound and an MRI. The MRI determined the fact that Ty was born without a right kidney, and the left kidney was a third of the size it should be. Not only that, but the kidney also had a cyst in it that was a third of the size of the kidney.We were devastated! Our hearts were crushed! This hit us like a ton of bricks. This explained the long wait in regards to being released from the hospital and all of the tests they were doing on Ty the day we were to be released. Well, when the doctor came to talk to us he said "I'm not going to paint a pretty picture..... we will just have to wait and continue to watch the numbers" (in other words, watch him die). Most of you know our families, and you know that that didn't set well with them. At that very moment, all that seemed to function on our bodies were our tears. My Dad and Larry's Mother had to speak for us. They weren't accepting that for an answer. That was totally unacceptable as a prognosis for their grandson. The doctor left us alone for a while and in time, returned and told us that Wake Forest Brenner's Children Hospital in Winston-Salem was able to do neonatal dialysis. So it was set up for a transport team to come from Winston-Salem and get Ty. At this time, we have rolled over into Christmas Eve and it didn't even feel like it.
We followed the ambulance down and arrived at the hospital around 4 am. We get to Brenner's and they rolled Ty up to the NICU and the nurses immediately got Ty settled in and then got us settled into a room down from the NICU. That morning we had 3 different doctors come into our room and talk to us while we were still in bed and acted like it didn't phase them at all. We finally got up and went to rounds (where you talk to the doctors, nurses and the rest of the team in regards to the plan of care for your baby). That is when they discussed the game plan, which was to do surgery. They were going to put the dialysis catheter in on Christmas Day. They told us the risks involved. They said that the biggest issue that could possibly arise was that Ty could get an infection in his abdominal cavity. They seemed more than confident, and we know that there are risks with every surgery. We knew that God was in control, so we didn't think too much of it. We were still scared. We didn't know what the outcome would be for our son, neither short nor long term. Anyway, that night I cried myself to sleep on Larry's chest. I just couldn't understand why God would do this to a harmless, sinless baby. Larry and I often wondered what we had done so horrible that Ty would be going through all this. In the back of our minds we knew that these thoughts were from the devil, but it still runs through your head very often in these situations.
Christmas Day and Ty went down for his first surgery. Thank God, Ty came through great. We started dialysis the next day and Ty didn't seem to be acting right. Every time he woke up, he was crying in pain. It was torment for us, but we could only imagine what was going on in our baby boy. Thank the Lord, Ty doesn't know "quit" or "give up". He is a fighter! So they did some tests and realized that Ty's bowel had been nicked during surgery. This was the one concern the doctor had told us about. So they had to go back into surgery and cut the damaged part of his bowel out, place a colostomy bag on him, and close him up yet again. They had to do this so they could get the infection to clear up. Come to find out, through many tests, that Ty had gotten 2 different types of infections in his abdominal cavity. He had a viral infection and a yeast infection. We go a few days and they realized that the yeast infection is not clearing up with the dialysis catheter in there, so they need to removed it. They explained to us that the yeast attaches to the rubber tubing that the catheter is made of. So down he goes for his 3rd surgery and he is less than 3 weeks old. I still remember getting back in there to see Ty and an IV was in his head. That freaked us out! Unfortunately, there were many more surgeries to come. Fortunately, they put a PICC line (central IV that should last at least a month) in to reduce the amount of sticks.
Once we got to settled into our routine of taking care of him with a colostomy bag and really enjoying him, the time rolls around for the next surgery which is 3 different surgeries all at 1 time- the colostomy reversal, nissen and a g-tube (feeding tube). Well, when the surgeon comes back to talk to us and tell us how the surgery went, he informed us that they had decided to take his appendix out as well. They did this without telling us and then proceed to tell us that its a routine thing. What??? That may not be a big deal to some, but it was to us. They have you sign a consent form that lists the procedure/procedures that they are going to perform. That was not on the consent form we signed. Anyway, that means Ty had 4 surgeries at one time. Out of all surgeries, this surgery hit him the hardest. He gained over 2 lbs of fluid. He only weighed around 7.5 pounds before this surgery. That means he gained almost a quarter of his weight in a matter of hours! Ty had tubes coming out of him every which way. He was in soo much pain. All of the pain actually led to him having many episodes of him clamping down soo hard that he stopped breathing and turned blue, his heart rate would crash, and the nurses would have to resuscitate him. They had to do this countless times throughout the night. We were speechless, scared, and in disbelief. Let just say that we didn't sleep that night. Blood stick after blood stick showed that his hemoglobin was lower than the acceptable level so they did a blood transfusion. This was a blessing in disguise because he improved more and more each day. A couple of days later, one of the NICU doctors spoke with us and said "we didn't know if he was going to make it or not". You would have thought someone punched me in my stomach! That comment took our breathes away, yet again. We knew he was bad, but you never want to think that your baby isn't going to make it! No matter how bad off they are, Where there is God, there is always hope! God was always there! Goes to show you the power of prayer.
(you can click pictures to enlarge) At this time we knew that we awaited one more surgery which was to put the dialysis catheter back in. So we enjoyed our time with him. Like I said earlier, only God knows what tomorrow holds.
This is a week later : )
Ty had his 5th surgery and it went better than expected. So now all were waiting for is to get his dialysis volume up and homeward bound. Well so we thought. Ty had a right hydracele pop up so we had that repaired (6th surgery). Then his dialysis catheter was clogged, he had 3 doses of TPA (a clot buster) which is what they use on heart attack and stroke patients. So they had to go back in and reposition the catheter (7th surgery). Low and behold the left hydracele popped up, so that needed to be fixed (8th surgery).
Our very first night we were able to stay with him, took his volume up to 120cc on his dialysis fluid and he started dry heaving all night long. As we went up on his dialysis, the gagging got worse and then eventually subsided- that is evidently what comes with going up on dialysis since it has continued to happen each time we increase the fluid volume.
FINALLY! We were released from the hospital and we went straight to the Dialysis Training Center, still in Winston but out of the hospital. We were so excited. We finished up with training mid-week and were able to go home on April 23 on our 5 year anniversary (dating anniversary). The best gift ever!
Signing the discharge papers
Finally!
See he's excited too
We get home we get settled in and at that time were on the dialysis machine 18 hours a day and trying to get out of the house while we can. We were home for exactly a week and Ty had to be readmitted back to the hospital due to his magnesium being high and having Diarrhea. While he was admitted his heart went crazy, very irregular. The monitor went as high as 290 and as low as 60. All this was going on while he was asleep and not moving. His normal heart beat is usually between 120 and 140. In time they got everything back to normal and after 5 days there we were able to go home, again!
We finally got out of the room and took him for a stroll They put a diaper on his hand so he wouldn't hit himself in the head with the IV
Now our next step is to enjoy our baby as much as possible and get his weight up to 22 lbs so we can get him on the transplant list. Now we're down to 15 hours a day. We're taking everything day by day and enjoying every cry, whine, smile, poop, coo and dada. Thanking God for every moment. From the very beginning, just by looking at Ty you would never know there was anything wrong with him or that he has been through what he's survived. All we can do is enjoy life and not focus on the negative. Needless to say there were times that we were so sad, frustrated, hurt and sooo mad at God, we just couldn't understand why. Its just one of those things you have to come to terms with the fact that God has a reason for everything. Thankfully God was there for us even when we are sad, frustrated, hurt and sooo mad at Him and he understands. Saying that to say we are not perfect and we do not always have a perfect attitude but we try our hardest and hope for the best. All we can do is use everything to God's glory and we plan to do that to the best of our ability. All we can do it try.
Our time in Winston God blessed us with wonderful nurses which now are wonderful friends. We had the opportunity to meet amazing families that understood everything you were going through. You families know who you are and we thank God everyday for you all! Thank you to all that have supported us, loved on us, gave us gifts and most of all prayed for us. We could not have done it without any of it. Words don't even began to repay for everything you all have done for us. God bless each and everyone of you. To our families, we could not have made it without you ALL. We will be repaying you all forever. We love you so very much! We just want to thank you so much for taking the time to read our story. Please spread the word about our site because we would love to encourage as many people as we can through our trials. We will be posting more on our family and Ty's condition so stay tuned. Here are a couple of verses that gave me peace through our experiences.
Jeremiah 29:11
11 For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future.
Psalm 139
1 O LORD, you have searched me and you know me.
2 You know when I sit and when I rise; you perceive my thoughts from afar.
3 You discern my going out and my lying down; you are familiar with all my ways.
4 Before a word is on my tongue you know it completely, O LORD.
5 You hem me in—behind and before; you have laid your hand upon me.
6 Such knowledge is too wonderful for me, too lofty for me to attain.
7 Where can I go from your Spirit? Where can I flee from your presence?
8 If I go up to the heavens, you are there; if I make my bed in the depths, you are there.
9 If I rise on the wings of the dawn, if I settle on the far side of the sea,
10 even there your hand will guide me, your right hand will hold me fast.
11 If I say, "Surely the darkness will hide me and the light become night around me,"
12 even the darkness will not be dark to you; the night will shine like the day, for darkness is as light to you.
13 For you created my inmost being; you knit me together in my mother's womb.
14 I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.
15 My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth,
16 your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be.
17 How precious to me are your thoughts, O God! How vast is the sum of them!
18 Were I to count them, they would outnumber the grains of sand. When I awake, I am still with you.
19 If only you would slay the wicked, O God! Away from me, you bloodthirsty men!
20 They speak of you with evil intent; your adversaries misuse your name.
21 Do I not hate those who hate you, O LORD, and abhor those who rise up against you?
22 I have nothing but hatred for them; I count them my enemies.
23 Search me, O God, and know my heart; test me and know my anxious thoughts.
24 See if there is any offensive way in me, and lead me in the way everlasting.
*Theirs more to come on the reasoning Ty was born the way he was. I will try to update as often as possible.
