FOLLOWERS

This has been an amazing journey! It is amazing to see how much this blog has grown. We have received support from so many thru this journey. I want to thank you all, your prayers have been felt and we are grateful! Please stay tuned as Jannell will be posting soon as she can find a moment.

TREVS PRIMARY NURSES

Here are two of the most amazing people in the world! Stacey is in the middle and Jill is on the right. I remember the first time that I met Stacey as she was taking care of our son. It was a very difficult day for me, she was so positive and her personality was so comforting. She loves our little Trev and is an amazing nurse. I can't even begin to explain how thankful that we where when Stacey had our son. I looked forward to hearing her voice and positiveness each morning that I would call in to check on Trev. Jannell and I would be able to relax knowing he was in good hands.
Jill was a great comfort for both Jannell and I, there is something about her personality that was also very comforting. She would take the time to sit down and talk to Jannell and I, she wanted to help us and was always willing to lend an ear. She is an amazing nurse and even more of an amazing person. We are so grateful to have had her as one of our primary nurses. I want to take a moment to thank Jill and Stacey as I know they are following this blog. Our lives have been blessed because of you guys and we are grateful beyond words. Thank you for always being there for us and providing the support that Jannell, Trev and I all needed. We Love you guys and could never put into words our appreciation for you.

TREVS HEALTH

Our little Trev has many outpatient doctor appointments to come. As you all know our son has not been producing Red Blood Cells on his own. The donor transfused RBC's will live for 3 weeks and then they will die, which means that Trev has about 10 days left of donor cells to sustain him. As I posted earlier,Trev did receive the IGIV transfusion with is immunoglobulin therapy that should boost his immune system to help him to produce RBCs. We do not know what his outcome will be, we meet with the Hematologist on Thursday the 19th for further analysis and testing of his RBC's and RETIC count. We are hoping that after Trev received the IGIV therapy that his body kicked in and he began the process of producing RBC's. He may very well need another blood transfusion(s) in the near future, but time will tell. We do know that we are in good hands with Dr. Yahish at Primary's and we will keep you posted on Trevs lab results. Trev also has one eye that is about 98% developed and must be followed up on due to his ROP condition. The outcome of his eye situation is very promising and we are not worried, his other eye is cleared 100%. His eye exam is also on Thursday the 19th and they should be able to give us the immediate results. Please keep our little Trev in your prayers, Thursday is a big day for him, as are the days to come.

PEACE

I think this picture speaks for itself...

FAMILY TOGETHER

Trev is currently 6 lbs. 13 oz. his gestational age is 37 weeks 4 days. He is a cute kid and a extremely mellow baby. The NICU required us to stay in a room at the hospital with Trev alone for four hours. They want to make sure that we can handle all of Trevs needs with wis oxygen, feeding, medication, monitors etc. on our own, well our little Trev put us to the test. About three hours into our stay we were amazed of how well he was doing at such a low flow of oxygen support. Jannell finished feeding Trev and he was sleeping on her lap, all of a sudden Trev started to choke. Jannell and I were panicked, but we had been trained if this was to happen. He was chocking for about 2 minutes and getting very little oxygen. His heart rate on his monitor was dropping extremely low, and he was de stating at a very low number. He started to turn purple and that is when I called the NICU to tell them that our son was choking. They were in our room in less than 15 seconds as they helped us stimulate him and educated us that this is very common in a preemie, that more than likely it will happen again. So far it has happened at least once a day, it is very scary, but we know what to do and we are managing. It is comforting to have his oxygen hooked up to give him an extra boost if he needs oxygen, but it is difficult for me to go to work and leave my wife home alone with Trev knowing that this may happen while I am away. She is a great mom and handles the situation very well.
We graduated our stay and we said our goodbyes, Reese and Drake met us in the hospital lobby, Reese was so excited for this day to come as she had waited 71 days and was dealing with the anxiety of her parents leaving every night, and knowing that her little brother was sick. When Jannell and I saw our kids we both started to cry as we have waited for this day for a long time as well. Reese reacted exactly how Jannell and I imagined, like her mom. She was bursting inside with joy, but does not show emotion on the outside due to being the center of the attention. Drake kept saying that it was his little brother "Treb" and was trying to poke him in the eye. It was snowing extremely hard outside and we were anxious to get him home. My family helped us so much to prepare our home as it was spotless and prepared at our arrival. Reese wants to hold Trev every second, she held him for 90 minutes straight the day he came home. Drake wants to hold him all the time as well, he kisses him all the time and cannot stop touching him. What a blessing it is to have our family together...

AFTER 71 DAYS TREV IS HOME

Jannell and I never thought this day would come, but it is here. Our little guy came home on November 14th, 2009 after 71 miraculous days in the hospital. One of our primary nurses stated to my wife early in Trevs stay at the NICU that "we will miss the NICU when we go home". I remember talking to my wife about this comment, we both agreed that there is no way in the world that we could miss the NICU, we wanted nothing more than to have a healthy son and to be blessed to bring him home. Well, Lisa was right! We miss the staff of the NICU dearly, we developed a relationship was so many at the NICU and we consider them some of our dearest friends. We were deeply saddened knowing that we would not see our dear friends who took such great care of our son. I think it hit me Saturday morning when we went in to go thru the discharge process with our son on saturday morning. I watched Stacey Jackson our primary nurse pick up our son and hold him closely. I could see it in her eyes that she was going to miss him dearly and that she loves him. There were many tears shed as all of our friends greeted us on our way out of the NICU. It has inspired Jannell and I and has shaped our lives in so many ways. Jannell is inspired to be a NICU nurse someday in the future, she would be incredible and can bring a true comfort to so many people with the ability to relate as to what parents will be going thru and to provide comfort. I have been inspired to share my experience with so many! I am planning on volunteering my time with the NICU parent support group who picked me up so many time thru our experience in the NICU. This is the least I can do, I feel honored to help others cope with one of the most difficult experiences they will encounter in their entire lives! Having your child in the NICU is a struggle beyond words, I remember so many days where I had to pick myself up and force myself everyday to function. I drew a lot of my strength from our parent support group. It was comforting beyond words talking with people who could truly relate and understand how you feel. I feel blessed to help others thru there experience for a long time to come.

THE MIRACLE OF TREVS LIFE

WOW! I do not even know where to start... So much has happened this week, Trev is 6 lbs 7 oz. today, he has graduated to level III feeding, which means he is now required to eat a certain amount to stay on this level, he is doing quite well. His oxygen setting is down to 1/4 of a liter and he will soon be off of oxygen support. We watched our son go thru so much this week. He is truly a miracle! Trev has been so sick, he still has not been able to produce RBC's. They have been pushing him and pushing him for 10 days to see if his body would kick in and produce RBC's. I cannot even begin to explain the pain that Jannell and I have suffered watching our son deteriorate every single day. His hands were as white as paper, I could see all the blood vessels in his little head as he became sicker and sicker. The treatment plan was to us that they need to push his body to the point that he is required to produce RBCs to survive. His Hematocrit got to the low point of 20 on Sunday, it should be above 40! This is extremely low. My little boy is such a fighter, he was so tired and was becoming symptomatic as he was fighting for his little life with every ounce of his body. He was starting to de sat at low levels which he has not suffered from for 3 weeks. Jannell and I have been completely crushed as every second that goes by our sons health deteriorates. Jannell and I left the hospital on saturday night worried sick about Trev, but had an overwhelming feeling that the something else was going on inside his body and the treatment was wrong. We went home and starting searching on the web for answers. Jannells mom sent us an e mail on a disease called Transient aplastic crisis anemia which is caused by ParvovirusB19 "fifth disease" The reason that Trev was born early is because of the development of fluid around his organs (hydrops) due to being exposed to the parvovirus. Trev has received numerous blood transfusions that will sustain him until the donor red blood cells die, but he will not produce RBC's on his own. Jannell and I discovered a treatment called IGG therapy, which is an intravenous administration of immunoglobulins into the blood stream thru a transfusion. We brought this discovery to the attention of the NICU. They told us that Trev does not have the Parvovirus in his system anymore and that it would not be of any use, but Jannell and I disagreed. The NICU staff determined that the reason for his failure to produce RBC's is more than likely not due to Parvovirus because he is not shedding the virus anymore, it only lasts for 2-3 weeks. Trevs condition is so rare, and they could not diagnose why he could not produce RBCs. There is a condition called Chronic Parvovirus that will linger in the body and suppress the bone marrow which disables the bone marrows ability to produce RBC's. We went to the NICU for rounds on Sunday morning again with our researched material. They stated "Trevs crit has dropped to 20 and we want to continue to push him until Wednesday to produce RBCs on his own." They again stated that they do not know why he is not producing, but we need to continue to push him until he produces RBCs on his own. I had an overwhelming feeling that this plan was entirely wrong, I told them that this idea does not make any sense,that we have been pushing Trev beyond his threshold for over a week, and that we need to do something different. They said "ok" what would you like us to do? I stated that they should do a blood transfusion as soon as possible and that I was concerned for his life if they did not. I stated that I have watched him each day become more and more sick and there is something else going on inside his body. They told us that we know our son better than anyone and asked us what we would like them to do? I can't even begin to explain how difficult it is to make a decision of this magnitude and it also struck me with the realization that the NICU staff really was stumped as to how to treat his odd symptoms. We decided to transfuse him that day to boost his crit levels. The NICU staff at IMC is one of the best in the country, but Trevs condition is well beyond "textbook" treatment. I was walking into the NICU on Sunday afternoon to be with my son during his transfusion, my phone rang and it was my wife and she was crying. I asked her what was wrong? She stated to me that she was planning on signing our son Drake up for a Kindermusic class which started in September. At the time she had a feeling for some reason to not sign him up for the class, she informed me that she received an e mail from the Kindermusic class instructor that the entire class has been infected with the H1N1 virus and to not attend the class. We felt so blessed that Jannell followed her instinct and did not sign him up. This could have been devastating if passed to our family and potentially to Trev. I felt an overwhelming feeling of comfort as I looked at the whole picture and this entire experience for the last 10 weeks. I truly believe that everything has happened for a purpose and that Gods hand is watching over him and protecting him. I entered Trevs room, he had an IV inserted into a vein in his forehead as they were just starting his blood transfusion. I picked him up, sat down, and held him for 3 hours. As he laid in my arms sleeping, I watched him slowly start to turn pink and receive all of his color back as his RBCs were boosted with donor cells. The wonderful staff of the NICU set us up with an appointment with Pediatric Hematologist Specialist Dr Yahish. He is a world renown Hematologist who has been practicing for 45 years. He has wrote numerous books and is the most brilliant man I have ever met in my life! We met with him on Tuesday, I remember the sick feeling of helplessness that I felt in my gut on the way to visit Dr Yahish, Jannell and I were extremely concerned for Trevs health. We sat down with Dr. Yahish as he blew us away with his knowledge of blood and the Parvovirus, in fact, he actually knew the man who discovered Parvovirus. Jannell and I took all of our research information of the Transient Aplastic Crisis Anemia as I stated above. My jaw dropped as I listened to this man re-site pretty much word for word all of our research that we performed on the internet, he answered my 3 pages of questions before I could even ask them. He stated that he wanted to see Trevs blood smear as soon as possible to see if Trev is a candidate for IGG therapy. This man has only seen 3-4 cases of Parvovirus in babies and that it is extremely rare. Based off of what we stated to him in regards to our sons condition, he felt that he was more than likely a candidate for this treatment. He stated that in his 45 years, he has never performed a IGG therapy on an infant, but it would not harm him. We left his office overwhelmed with joy knowing that there was now potential hope for our son! I called the NICU immediately, told them the news, and to get the blood smears to Dr. Yahish immediately. Today we received the word that Trev is suffering from the Parvovirus and it is still suppressing his bone marrow and THAT is why he is not producing RBCs. Dr Yahish felt the IGG therapy would benefit Trev, he received the transfusion today.
My wife attended rounds this morning and receive the news of the last thing that I would have ever expected. They stated to Jannell that Trev is doing extremely well, he is eating, growing, not suffering with apnea or de sats and it is time to send him home this weekend on Saturday. Jannell stated to me that she did not understand because she was so shocked, they had to repeat the news to her. To say the least, she was stunned! The staff at the hospital actually chuckled at the shocked look on Jannells face, we have been there for so long we are great friends with all of the NICU staff. They continued to state that Trev is doing so well we cannot keep him here he must go home, they will treat his blood complication as an outpatient at Primary Children's Hospital. OUR SON IS COMING HOME!!!!!!!!! This has been the most difficult/exciting week of my entire life! Complete one extreme to the other to say the least. Trev was on the brink of death and six days later they are stating to us it is time for us to take our son home. Jannell called me and told me the news over the phone. She had to tell me 3 times because I refused to believe her as I am sure you can imagine. He is scheduled for discharge sometime this weekend, we were planning for sometime in December for Trev to come home at the earliest. To be honest we are so caught off guard we do not have anything ready for him. We need to paint his nursery, buy baby supplies, clean, etc. as we prepare for him to come home! I want to mention how grateful that I am for the NICU staff at IMC. Without there care,treatment, and support there is no way that my son born 3 months early would have had a chance at life. The hospital is truly amazing and we feel blessed beyond words for their care of our son. I want to give a special thanks for all the friends that have been praying and fasting for our son. Your support is what has carried us thru this entire experience. I am so grateful to be a member of the Draper 7th ward, the love, support, praying and ward fasting for our family has strengthened us beyond words and I want you to all know that your prayers were felt and you have blessed our lives to a level that I did not know existed. I want to take a moment to mention that we do appreciate all of the support, please understand that when our son comes home that we are under strict regulations to not have visitors. It is the hite of the flu/H1N1/RSV season which would all be detrimental to Trevs health if he was exposed to one of these viruses. I will continue to update blog and be sure to keep everyone informed. THANK YOU ALL! May God bless your lives, as you have ours.

SICK TREV

Trev is currently 5 lbs. 14 oz. He is still growing very fast. Jannell & I are having a pretty tough time right now. Trev is getting sicker and sicker every day and it is difficult for us to see him this way. Our patience has grown short, we talked the NICU into running a blood test on Trev Friday the 6th. He was scheduled to receive the test on Monday the 8th, but Jannell and I had to know what was going on with his blood. It is so difficult, every test that they run with his blood they have to take about a 1/2 oz. of blood. When he is already having problems producing blood it is hard on him to lose any blood at all. They pricked his heel on Friday night to fill two small vials of blood as I held his hands, I could see in his eyes that he was scared, but that he found comfort in me talking to him and holding his hands as they drew his blood. I will never forget how his face looked that evening while I was holding his hand thru this test. The results came back as expected, his Hematocrit level has dropped to 24 from 27 he is getting more anemic and is not producing RBC's. We are very concerned for him, he is very pale, lethargic and starting to de sat. Monday morning they will run the the same tests to check his Crit levels. Please keep our family and Trev in your prayers, we are staying positive and we know he can get over this hurdle.

REESE,MOM,TREV

My four-year-old little girl Reese is so excited for Trev to come home. Jannell and I have found her in her play room numerous times playing with babies and wrapping cords and cables around her play dolls pretending that she is taking care of Trev. She wants to see and hold him so much, it is very difficult for us as parents knowing that we cannot let our little girl see her little brother inside the NICU. Reese has already moved her car seat all the way to the back of our 3rd row seat in our SUV because she tells us “Trev is coming home soon and he is going to sit where I sat.”
Tonight as I put my little Reese to bed we talked about Trev. I told her how lucky that we are to have Trev in our family and then I told her that Trev is so brave! She responded with “even braver than me”? I said to her Reese Trev is even braver than dad. I told her that Trev is braver than I will ever be, he has been on this earth for 62 days and he has fought hard for his life each and every single day. I told her that we will live our entire life and never fight as hard as Trev has to live on this earth. It is amazing how much I have learned from I tiny baby that has more strength and courage in 1 oz. of his total body of 2 lbs. 13 oz. which is the weight he was born at than I have in my entire body. What a blessing this has been for me to see what is important in this life and to be so proud of a son that has worked so hard for each and every breath that he takes. I have gained so much strength from my wife, I had no idea that my wife was built with the determination, strength, love and character that I did not know was possible for a human being to possess! She is so beautiful and honestly the best wife and mother that a man could ever even dream of having. We cry together, we laugh together, we are proud together. She never fails to pick me up and keep me on my feet thru this entire trial. She is beautiful and so caring of all of our families needs. I do not have the strength to go thru this and if it were not for the strength of my wife I would not make it thru this test. I love you Jannell thru to my core!!
I told my daughter tonight in her bed that Trev is going to be very special in this life and is going to accomplish amazing things. You do not go thru something like this and pull thru the way he has, unless you are special. I then followed to tell her that I believe that God sent him to us for a reason, and that being Trevs big sister makes her special. She asked me why? I told her because Heavenly Father picked our family special to have Trev and that he prepared our family with you first,” Because Heavenly Father would only give a baby like Trev to a family that had something special. She asked me” what is special about us daddy? I said to her “you are special Reese, and Heavenly Father sent you to us special because Trev needs a special big sister to watch over him as he grows up and Trev and mommy and daddy are so lucky to have you and Drake in our family”. “Trev is very lucky to have a special sister and brother that were hand picked to take care of him.” I want my entire family to know that I AM A LUCKY MAN and I love you all so much!

The Dad

ROP EYE TEST SUCCESS!!

Trev currently weighs 5 lbs. 14 oz. he is 35 weeks 6 days gestation and he has been at the hospital for 62 days now. He is eating so well and continues to grow every day. He is still a sick little boy and has not yet produced red blood cells. It is very hard for us to see him because his skin is so pale from being Anemic. The great news is that his little body is not symptomatic from his Anemia. If he was in dire need of another blood transfusion he would be loosing weight, de sating, not eating well, and up and down on his oxygen needs. He is stable and continues to make progress, they will be performing a test on his blood and liver on Monday to give him a full test to see if there is some underlying issue(s) as to why he is not producing RBCs. For the time being his body needs to continue to fight to try and produce RBCs on its own. You should see him light up when his mom comes into his room, he loves her so much! We received absolutely wonderful news from Trevs eye test on Wednesday. His eyes have developed about 98% and he is showing no signs of complications from ROP. This is a HUGE relief off of our shoulders as this has been weighing very heavy on our minds. (ROP is a condition where in severe cases the blood vessel development of the eye can detach the retina causing complete blindness.) Jannell called to tell me the results after his eye test and I did not believe her, she had to tell me three times, then we both starting crying.. Trev is such a stud and he is doing very well. The ability for Trevs little body to produce RBCs is the last big hurdle and we know he can do it! We love you Trev.

BATH TIME

Trev seems to love his baths as long as the water is very warm. We love to give him a bath and feed him right after, he always seems to eat so well after his baths. Trev is still not producing Red Blood Cells, the NICU sent a blood smear test to Dr. Hayish at Primarys. He stated that Trevs body is capable of producing red blood cells on its own, but the virus is still overtaking his bone marrow and his RBC production. It is a waiting game, the scary part is that his Hematocrit levels continue to drop, they are keeping a close eye on him to make sure that he does not become too sick before they treat him with an additional blood transfusion. They want to stall on a blood transfusion as long as possible due the the risk of the procedure, and to avoid creating a more difficult situation for Trevs body that will continue to rely on the blood transfusions to produce his RBCs. Trevs body has to be pushed to see if it will kick into survival mode, right now his body is dependent on transfused RBCs to sustain his required counts. He must start producing on his own, but it is time that will determine when Trev will produce RBCs on his own. He was given an additional shot of Darbopoetin to see if this dose will kick-start his production of RBCs. (This is his 3rd dose of the medication.) Jannell and I are very concerned and worried about this situation, we are hoping to see some progress very soon.

BOTTLE FEEDING

Trev is taking a bottle incredibly well! Tonight he finished his entire bottle of 50ML in 15 minutes! To our knowledge that is the most that he has ever ate at one time. Keep going little stud!!!

TREV AND MOM

Trev is now 5 lbs 10 oz. today. He is doing pretty well, they will be performing Trevs eye test again tomorrow to see the current condition of the ROP that he has developed in his eyes. Tomorrow is a HUGE day for Trev and we are praying for the best outcome possible. Trev has graduated to level 2 feeding and continues to eat very well. He is currently receiving 43ML every 3 hours when he is not breast feeding or taking a bottle.