FYI...

Well just thought I would let everyone know that the BLURB website where you can make your blog into a book, is no longer compatible or whatever with blogspot. YEP I AM SERIOUS! FRUSTRATED HERE! If anyone knows of a website that does have the ability to make your blog into a book PLEASE LET ME KNOW. Thank you so much.

Our Angel

So here I am at 11:30 at night trying to figure out how I am going to write this. I mean how am I going to write this? I’ve thought about this over and over and over again. I don’t know how…and honestly I don’t want to know how.
Ezra passed away October 3rd 2008 at 4:30 a.m in my arms. Both Beau and I were with him. He was due for a surgery in the morning of the 3rd to put a PD Cath in to prepare him to come home. During the night Ezra became very ill. By morning Ezra had a very slim chance of survival because he was so ill. So the Doctors did an Exploratory Surgery to see what was going on. A blood clot had stopped blood flow to most of Ezra’s small intestine. Because of that Ezra’s slim chance of survival was gone.

When people would go into Ezra's room to see him they would always comment on how strong he is. They also commented on how before going into his room they would be so worried and anxious and then after entering his room they felt this calming and peaceful feeling around them. I believe that it was Ezra. I believe that they felt his strength and love. And I believe that the Lord was there calming as well. He probably knew that our little guy need positive feeling around him at that time in his life.
I don't know what to write. What mother or father knows what to write about their baby that was taken so soon? All I can do is write what I feel. That's all I know how to do.
My Ezra…my beautiful, beautiful Ezra. I wish you could have stayed with me. I wish that I were holding you right now and smelling your sweet baby smell. I wish I were getting up in the middle of the night to feed you or just hold you and comfort you. What I would do to hold you again…or smell you. Just to feel you. To hear your cry…I dream of your cry.
I am so angry at times…well most of the time, that you were taken from me so soon. Angry and hurt I guess. Why did God take you so soon? People tell me that you were to pure. They tell me that I will be with you again. I guess that should bring me comfort. Maybe someday it will. Not right now though. It is too painful right now.
I am grateful for your strength. I know that every day that you were here with me was a miracle. I believe that you wanted to meet your mom and dad and when you did you begged God to let you stay just for a bit longer. I believe that he told you it wasn’t going to be easy, but you didn’t care. You are such a strong boy. Because you stayed we got to hold you and bathe you. We got to smell your sweet breath and hear your sweet cry. How grateful I am for everyday that I did get to hold you and sing to you and read to you.
I wish I could have taken the pain away. I would have taken it if I could. I would have taken everything. What was hardest was not being able to help you. All we could do was be there. How helpless your dad and I felt. I think the most important thing to a parent is protecting their children. How hard it is to know we couldn’t protect you. For that I am sorry. I am so sorry.
I miss you terribly. Every minute of every day you are on my mind. I am always wondering where you are. Are you here with me or are you busy somewhere else right now?
I know that you are okay now. I know that you are happy. I know one day I will see you again. And hold you…and never let you go again. And for that knowledge I am grateful. How lucky we are to have such a beautiful strong boy like you.
I am so thankful for your strength and for staying for as long as you could. I’m thankful I got to see your beautiful face. We will miss you everyday until we are with you again.

Ezra...

Well I haven't posted in a little bit so I will do a quick update. I have alot of pictures that I need to post but I just haven't had time right now. I will though. So Ezra is still on the CVVH. They took him off for 24 hrs to see if he would urinate on his own. Well in the 24 hrs he was of he had about 2 cc's of urine come out. Yeah...not a whole lot AND he got puffy again. So he is back on the CVVH and thinner than I have seen him in about 2 months. They are hoping that his kidneys will recover in time. We just need to be patient. If they do not recover he will most likely need long term care until he is able to recv a transplant. BUT that is down the road and we don't even know if that is something that needs to be thought about right now. So we won't talk about that right now. His eyes are open quite a bit and he is starting to focus them a bit more. He really is a beautiful boy.
Tucker and Tilly are doing good. We were able to go to the Apple Orchard as a family on Saturday and it was a blast. The kids loved it! I loved it. At the end of our long walk through the orchard we sat down and had a wonderful HOT apple turnover. YUMMMM. Tucker kept on telling me how much he loved apple pie. Oh, well actually we didn't walk the whole time. We were able to hop on to the tractor going by. Fun stuff.
Beau is doing well, he has recently told me that he is a great photographer and from now on he will be the one taking the pictures. So all the pictures from the Orchard are from Beau. I must say he really does get some pretty things on camera. He's so funny. Love that guy. So I know that is short, sweet and choppy but that's all I have time for rightnow. I will post pictures in a bit.

"White" Poppa and Bright Eyes...

We have been so lucky to have family come out and help us lately and Ron (Beau's dad) just came out for 10 days to spend time with us and the grandkids. What a WONDERFUL visit it was. I am happy we were able to spend time with him and he was able to see Ezra. Tucker has named him the "white" Poppa for obvious reasons. It was so cute the whole time he was here Tilly would just keep telling him that she loved him. This morning he was in the bathroom and Tilly knocked on the door and said "Poppa I love you." So dang cute. Tucker loves to tease Poppa and Beau with the whole Yankees and Red Sox thing. Somedays he is all for the Yankees and others he is all about the Red Sox.

Ezra is looking pretty good. He has lost alot of fluid and some of his numbers have improved. He is doing really well on the Dialysis. We are hopeful. And of course he is still not out of the woods but this is yet another good day. One of the most exciting things was to come in and see his beautiful eyes. Beau and I can't get enough of them. What a beautiful boy.

All Sorts of Stuff...

Well, today was a decent day considering everything. Ezra went on CVVH on 9/6/08 and has been tolerating it fairly well. His blood pressure has been good and so has his heart rate. Two things that they were concerned about. And still are. So far the Dialysis is doing what we wanted it to. Ezra is very slowly starting to lose some of the fluid that is in his tissues. So we are hopeful...still worried but hopeful. Got to keep the balance. For those of you who don't know the CVVH is pretty much acting as his kidneys right now. So for now Ezra is "stable"...very very very sick but stable. I was so happy today because Ezra was able to open his eyes for the first time in a long long time. What beautiful eyes he has.
Tilly and Tucker are doing well, especially since Beau has been staying home with them. The "white" Poppa is here right now and the kids love it. Tilly is always telling Poppa how much she loves him. I am so happy that Ron is here right now, we just love him so much. So in the evenings when the kids are in bed Beau and I come up together to see Ezra. I am here all day during the day and then in the evening Beau and I will come up together.



So that is pretty much the latest with all that is going on in the Ross family. We still continue to fast and pray for Ezra that the Lord will heal him. And pray that he will bring some comfort to Ron and the family in their time of grief. How thankful we are for our faith and knowledge of the gospel.

CVVH and ECMO...

Ezra’s Update 9/6/08
I don’t even know where to start anymore. I’m just going to write what exactly my understanding is of what is going on. So if I lose you along the way I am really sorry.
Last I wrote Ezra had started to pee again. He was doing really really well. He started to lose some of the fluid and we were really hopeful. Well, then Ezra’s PD (Peritoneum Dialysis) Catheter started to leak so they had to stop the Dialysis. They also wanted to see if Ezra would pee and just keep up with it. Well, he was doing okay with urine output for a tiny bit but it of course started to trail off AGAIN. His blood pressure has been low so they have been trying to give him medicine to get the blood pressure up so that he would pee. Well, since giving him these medicines like Dopamine and for a short time an Epi drip his heart started to work hard which made the walls of it enlarged. Enlarged walls of the heart are not good in case you don’t know. It is a very bad thing if it starts to get too enlarged. The Cardiologists did an Echo and decided that he needed to be taken off of the high doses of medicine like Dopamine. So they have been able to take him from 30 mcg/kg/min to 8 mcg/kg/min.
We are still having a hard time getting his blood pressure to stay up and his heart rate low (so that his heart isn’t overworked). Ezra is still not urinating like he should. He has about 1 cc of urine an hour. He is EXTREMELY puffy. His skin is starting to get really shiny. I asked the nurse why and she told me that it was because his skin is just being stretched so much and it will start to crack and ooze a bit because he is so edematous.
Now, because Ezra is not urinating like he should and the P.D is not working like it should we are most likely going to try the CVVH. I am sorry I don’t know what that means. It is the where the blood is constantly being filtered and then put back into the body. They are trying to get the Urea and fluid out. If the CVVH does not work then we are looking at ECMO. Beau and I DO NOT want it to come to this but if that is Ezra’s last hope than we will do it. We feel like Ezra deserves as many chances as he can get. Below I have copied a description of what ECMO is for everyone to know what it is and what it entails. Beau and I pray that the CVVH does the trick. If Ezra went on ECMO it would be an even scarier time for us. Ezra already has the Coagulapothy problem and has had bleeds in the past. They would monitor Ezra’s brain to watch for Hemorrhaging but it is still so extremely scary and risky.


EXTRACORPOREAL MEMBRANE OXYGENATION



In intensive care medicine, extracorporeal membrane oxygenation (ECMO) is an extracorporeal technique of providing both cardiac and respiratory support oxygen to patients whose heart and lungs are so severely diseased that they can no longer serve their function.
An ECMO machine is similar to a heart-lung machine. To initiate ECMO, cannulae are placed in large blood vessels to provide access to the patient's blood. Anticoagulant drugs (usually heparin) are given to prevent blood clotting. The ECMO machine continuously pumps blood from the patient through a 'membrane oxygenator' that imitates the gas exchange process of the lungs, i.e. it removes carbon dioxide and adds oxygen. Oxygenated blood is then returned to the patient.
There are several forms of ECMO, the two most common of which are veno-arterial (VA) and veno-venous (VV). In both modalities, blood drained from the venous system is oxygenated outside of the body. In VA ECMO, this blood is returned to the arterial system and in VV ECMO the blood is returned to the venous system. In VV ECMO, no cardiac support is provided.
VV ECMO can provide sufficient oxygenation for several weeks, allowing diseased lungs to heal while the potential additional injury of aggressive mechanical ventilation is avoided. It may therefore be life-saving for some patients. However, due to the high technical demands, cost, and risk of complications (such as bleeding under anticoagulant medication), ECMO is usually only considered as a last resort therapy.
ECMO is most commonly used in NICUs (Neonatal Intensive Care Units), for newborns in pulmonary distress. It is around 75% effective in saving the newborn's life. Newborns can't be placed on ECMO if they are under 4 and a half pounds, thus ruling out the device for most premature newborns. Newborn infants are occasionally placed on ECMO due to the lack of a fully functioning respiratory system or other birth defect, but the survival rates drop to roughly 33%. The time limit for a newborn is usually around 21 day max. Dr. Thomas Krummel, Chairman of General Surgery at Stanford University, held the record for the longest survivor on ECMO at 62 days. This record was in turn broken recently on January 30th, 2008, when a patient at NTU hospital, Taiwan survived a drowning accident after 117 days of ECMO application.[1]
'ECMO can have dangerous side effects. The large catheters inserted in the baby's neck can provide a fertile field for infection, resulting in fatal sepsis.' (Excerpted from How Doctors Think by Jerome Groopman, M.D.
In Adults ECMO survival rates are around 60%. In Adult VV ECMO there are reports of patients being supported for over ten weeks. ECMO has yet to have proven survival benefit in adults with ARDS.
Management of the ECMO circuit is done by a team of ECMO specialists that includes ICU physicians, perfusionists, respiratory therapists and registered nurses that have received training in this specialty.
In VA ECMO, patients whose cardiac function doesn't recover sufficiently to be weaned from ECMO may be bridged to a Ventricular assist device (VAD) or Transplant.
**********A little update***********
Ezra right now is on CVVH and the surgery went smoothly and so far so good. Meaning that no big complications yet and hopefully never. So once again this is taking his blood out and filtering out all the toxins and fluid and putting it back in. We will see how this goes. Beau and I pray that this works for our little man. We will keep updating.

A mind of his own...

Well, here is the latest update on Ezra. Ezra has been on Peritoneal Dialysis to try and assist his kidneys, get the fluid off and get the toxins out of his body. Ezra was doing well on the Dialysis until it started leaking around the catheter going into his Peritoneum. When that happened they had to reduce the amount of Dialysis fluid that they were putting into his Peritoneum. When they reduced the fluid that they were putting in his B.U.N started to rise. The BUN rising meant that the toxins in his blood were not being removed, so the Dialysis was not doing what they had hoped. With the rising B.U.N that could make it even harder for his blood to clot and make it harder for him to fight off all the infections that he has.
Dr. Colaizy (who is the doctor on staff right now) talked to us about the situation and told us that they felt it was very important that we start Ezra on the Hemo Filtration Dialysis. They will put a catheter into his body that will take the blood out filter it and put it back in. I know that isn’t a very good description but that is the best I can do. Two of the worries that come with this are of course infection, and trying to maintain a good blood pressure. There are many other worries or risks but I’m not going to list those right now. The surgery will take place tomorrow, so we will keep you all updated on how it goes.
8/26/08


Today was a fabulous day! Beau and I got to the hospital expecting that Ezra would be going into surgery today. Well, Ezra did not agree with that. Around midnight last night Ezra started peeing! And he is STILL peeing! What does this mean? It means that his B.U.N has gone down a tiny bit and his Creatnine has gone down as well. This is FABULOUS news. So the doctors wanted to give him some more time before doing the Hemo Filtration. The Doctors have a good plan set up and so we will just follow that for however long we need to. It’s funny because they have all said that Ezra has a mind of his own. He will do things when he is ready to…they can’t push him. That’s our boy…STRONG! Dr. Colaizy came into the room today and one of the first things she said was “Ezra had a lot of people praying for him last night.” VERY TRUE and we are thankful to all of you for that. Ezra is not out of the woods of course but today is a day for celebration. I’ve come to notice that you really need to enjoy these good days because when the bad ones come you need to be able to remember and hold on to the good ones. Yes, I am just now figuring that out. Granted Beau and I are both still guarded because this is so UP and DOWN…but still we are extremely happy that for today Ezra is peeing.
8/27/08

And SOOOOOOO...

And so we have quite the update. On 8/16/08 Ezra stopped urinating. What is wrong with that???? Well, it means he gets puffier and he is not able to rid his body of the toxins. SO...we, meaning the doctors and Beau and I decided that Peritoneal Dialysis. It is a temporary Dialysis treatment until his kidneys start kickin in and working how they are supposed to.

The day of the surgery to place the catheter the Doctors switched Ezra over to a conventional Ventilator. Meaning not as high powered as the Oscillator that he is on. The reason for this was because when it was time to take him into the O.R. it would be easier to manuever with the smaller ventilator. I'm sure there were other reasons but i am sure I forgot them. Sorry. Anyways, his surgery was set for 6 p.m. on 8/17 and Ezra was doing really great on the Conventional Ventilator so we decided we would go over the Hunter's for dinner at 3:30. Right after Beau and I left Ezra started to have a Pulmonary Hemmorage. In other words blood started to come up his Tracheal Tube (the tube that is pushing air into his lungs). They were able to get this under control but what that meant is that he was too fragile to take to the O.R.. SO the O.R. came to him.
Meanwhile at the Hunter's (totally oblivious to what is going on with our little Ezra because I left the damn cell phone in the car on accident) Tucker and Tilly were having a great time spending time with Mom and Dad and their little cousing Nik Nak and Auntie. Tucker and Tilly really are champs! For all the stress and unbalance in their lives right now they have been truly amazing. Beau and I are truly blessed to be their parents.




After about 3 1/2 hrs or so in surgery they were able to place the Catheter exactly where they wanted it. Ezra is doing well on it and we pray that he continues to do well and that we can avoid infection. They are keeping him pretty heavily sedated and comfortable right now. Just one more hurdle to overcome. We love this little guy and are so thankful for him in our lives.

Hello Again...

Well, some good news and bad news today. We will start with the good news. Ezra gets his labs drawn on Monday and Thursday to see how his liver is doing. Well, yesterday they tested Ezra's PT and Platelets and his PT came back 18 and Platelets came back at 60. On Monday they were pretty much the same. On Wednesday Ezra stopped urinating and they thought maybe it was because he now has a Fungal infection. His blood pressure was pretty low as well. The Kidney Doctors came and took a look at him. They thought that maybe because of all of the Dietretics that they were giving him it just kind of pooped his kidneys out. Well Thursday they put him on Dopamine to try to get his blood pressure up. The Dopamine did raise his blood pressure and because of that he is now urinating again. FABULOUS! Also on Thursday Ezra coughed up a bit of blood. I was WORRIED...but there hasn't really been any more. SO they checked his clotting factors again just to make sure that wasn't the cause for the bleed. SO today we got the clotting factors back and his PT is now 16 PTT is 45 and Platelets are 79! YAY! At least Beau and I are happy about that. I'm sure the Doctors have to be as well. SO I think I included the bad news with this long and totally not gramatically correct paragraph. So yes, Ezra is fighting another infection but it is "treatable". So here are a few pictures of the past couple of days. I think I am going to do the next post about Tilly and Tucker because they are such champs and have been amazing through all of this.

p.s. Just a note. Ezra has not had Platlets since Saturday the 9th of August. Awesome because he used to be needing platelets like every other day. Also he has not had any FFP or Cryo for a very long time. He is also still very very swollen but as he heals and is able to fight off these infections he will start looking better.

Our Beautiful Ann

I don’t really know how to put into words how it is I feel about Ann. All I can say is that just saying that I loved her is not enough. My love for her went way beyond that. I felt like not only did I have a mother in law who was amazing in every way but I also had a friend. I thought that maybe the best way to do this is to write down some of my fondest memories of Ann. So here are just a few.
* Ann loved her grandbabies. Her life revolved around them. When we would visit her in Price or she would come out to Iowa she would always insist on bathing them. She loved that one on one time with them. Those bath times usually lasted a good hour in the tub.
* When we would go to visit her in the summer time she would take the kids out into the hills to look for treasure or just to go on a nature hike. Tucker and Tilly loved to go on adventures with her.
* Ann was always thinking of others. She was so generous with her time and love and anything else she could give to help somebody out. When she was here right after Ezra was born she scoured my house. Cleaned everything and even reorganized my kitchen for me. I remember I came home one night from the hospital after being with Ezra and she was limping around. I told her to just sit down and relax. She told me..”No, I need to do this, I need to help out in any way that I can right now.”. That is how she was every minute of every day of her life.
* Ann was the best mother in law anyone could have ever asked for. Every time that we were together I felt nothing but love from her. She used to go through these home magazines with me and tell me what she thought would look good in my house or maybe what she was thinking of doing to hers. I know that may seem like a silly memory but to me I cherished those times together. I felt like we were such good friends.
* Whenever I would get my hair done and it was a different color or length she would always tell me how it looked beautiful on me even when it really didn’t. Even when my husband was standing right behind her laughing at me.
* I felt a closeness with Ann that I never thought I would have with any other woman besides my mom. There were several times where I called her mom and then quickly corrected myself. She would look at me with her beautiful big eyes and smile and say, “I don’t care if you call me mom, I like it.” I wish I would have done that more.
* Now I know this is going to be a surprise to some of you but Beau and I would some times have a bit of a disagreement in front of her and she would just stand there quietly and then when it was over and Beau left to cool down she would get this big smile again and in a very sweet and loving voice try to explain why Beau was saying what he said or doing what he was doing. It made me feel good because it made me feel like she didn’t want me upset with her baby but she also didn’t want to see me upset.
* When I was pregnant with Tucker and still working in Salt Lake Ann would come up from Price and we would go to the Olive Garden for lunch. She loved their salad and breadsticks. She would always tell me it was so “nutritious” .
* When Ann was here last she stayed at the house with us. We don’t have an extra bed but we did have a single mattress. Ann put that in the kids room between their two beds and laid with them every night. One night we came home and she was curled up in a little ball at the end of the mattress and Tucker and Tilly were all sprawled out on her mattress. I know she didn’t get one good nights sleep but I know that it didn’t matter to her. As long as she could be close to her precious babies.
Those are just a few of the many many memories that I have of my beautiful mother in law. I wish everyone could have known her because their lives surely would have been blessed if they had. I love her and I know one day I will see her again. I wish I could have given her one more big hug and told her how much I really did love her. I hope she knows that now. She will be greatly missed. I love you Ann.

Below is a copy of her Obituary.
Ann Ross "Grannie Annie" PRICE- Our beloved wife, mother, grandmother, great-grandmother, sister, aunt, friend, and teacher was taken from us too soon in an unfortunate car accident on August 4, 2008. She will be greatly missed by all who knew and loved her. Ann was born on October 14, 1950 in Taos, New Mexico to Cleotilde Vigil and Amadeo Romero. She graduated from Hillcrest High School in 1968 and later earned her Associates of Science degree from the College of Eastern Utah. On September 6, 1970, she married Ronald G. Ross in Elko, Nevada, their marriage was later solemnized in the Manti LDS Temple on December 7, 1994. Ron and Ann moved to Price in 1974 and raised their family of four sons. While residing in Price she was employed for 25 years in the coal mining industry. Her family was the absolute love of her life, especially her 14 grandchildren who affectionately called her "Grannie Annie". Ann was a caring person who had a positive influence on the lives of those she touched. She never suppressed a generous thought or deed; she was a peacemaker and a woman of unique strength and character. Should each of us be able to tear out a page from Grannie Annie's Book of Life and incorporate the wisdom contained therein, we would all be a better and more loving people. Ann you are so dear, so sweet, so beautiful, so precious to us. You are truly an elect lady and we are going to miss you more than words can express. May God be abundant in his blessings upon you. Ann is survived by her loving husband, Ron Ross, Price; four sons and one step-daughter: Don (Lara) Ross, Grand Junction, CO; Ron (Julianne) Ross, Sandy, UT; Scott Ross, Denver, CO; Beau (Sarah) Ross, Coralville, IA; Kari (Reed) Smith, Springville, UT; grandchildren: Noah, Sophia, Avabelle, Lola, Eliza, Isaac, Tucker, Tilly, Ezra, Trevyn, Daryk, Danyelle, Mytchell, Mckenzy, great-granddaughter, Ryan Rae, and one more on the way. She also leaves behind four brothers and three sisters, Ben Valencia, George Gonzales, Tom and Tim Romero, Orlinda Petersen, Lillian Taylor and Irene Leyba, and many other extended family members. Funeral services Saturday, August 9, 2008, 2 p.m., Price Fifth LDS Ward, 545 E. 400 N. Family will receive friends at Mitchell Funeral Home, 233 E. Main Street in Price Friday evening from 6-8 p.m. and at the church Saturday one hour prior to the service. Interment, Cliffview Cemetery, Price. Arrangements entrusted to Mitchell Funeral Home.

We're UP and then DOOOOWN...

******* WARNING: this is a lot of information ********
So the past three days have been a bit crazy. On Monday Ezra was extremely swollen...or Edemadus. His little belly was extremely swollen and they thought he may have Ascites. Come to find out he didn't have that and that is a good thing. He was and is just really swollen. SO much that his little legs wouldn't bend for a while. The Doctors upded his Lasiks to three times a day orally and gave him some Albumin. Albumin from my understanding is a protein that the liver makes and if it is low then will you get fluid build up. So Ezra started looking better the next day which was Tuesday. He wasn't as swollen and he was EXTREMELY alert. He was awake a ton and just as cute as ever. TODAY, not so good. This morning when the nurse took Ezra's temperature he had a fever of about 101. Because of that they checked his C-Reactive Protein and it was at 1.2, so that wasn't good. That meant that there was an infection. So they gave Ezra some IB Profen and he seemed to be "okay". At one point Ezra started crying and I noticed that he had blood coming from his nose and mouth. The nurses suctioned his nose and we thought that maybe it was just a little bloody nose that went down into his mouth. THOUGHT is the keyword. They decided to check all his labs again today and tested his CRP level again. His CRP came back at 2.0. That was just withinn 5 hrs that it rose. They did a chest xray and found a dark spot on his lungs and they told us it was Pnemonia. So they had to put an IV in him to get some Antibiotics going. I believe it was when they were doing the IV they noticed that he had blood coming from his mouth. Right away they moved Ezra to bay 1 of the NICU (for the really sick babies) and Inti bated our little man. Ezra was having an extremely hard time breathing and his blood gases were really bad. All I can tell you from that is that he had high levels of CO2. So Ezra is now Inti bated and also has a tube going into his stomach to suck out the blood. He is still currently bleeding in his stomach and they are still giving him transfusions of blood and trying to get the bleeding to stop by giving him Cryo, FFP and Platelets. They also took a blood culture and have found that there is a bacteria infection. Sooooo all in all Ezra is having an Extremely Hard day today. No pictures today but soon I will post more.

NEVERending Roller Coaster...

So a friend of mine was saying how she wanted to write a book about the different emotions you go through and what to expect when you have a child in the NICU. Her son was born at 24 weeks and was here for about 3 months (maybe more). I really hope she does it one day. AND I would love to help her. Honestly this really is like riding a Roller Coaster in the dark.
On Monday, Dr. Whittington came and gave Beau and I a big boost of hope. I'm sure most of you have read my husbands lovely post explaining everything. Anyways, Yesterday they decided to check Ezra's labs to see how he was doing. I don't remember if Beau wrote that they took him completely off the Fresh Frozen Plasma. Well, yesterday the labs were NOTgood. His clotting factors were very very bad. Not only were his numbers bad but the poor little guy was fussier than I have ever seen him. He was so uncomfortable and just upset. Come to find out they think maybe he might have reflux. SERIOUSLY could anything else be thrown at our little man. ARRRRRRRRRRRRRRGH! So we have bad lab numbers and then reflux...AND THEN...drum roll please...we get the Liver Doctors that come and evaluate him. I know they are just doing their job and trying to help make him better but holy HELLATION! So they did some reflex thing and said that they think he has the very EARLY signs of Encephalopathy...THINK is the key word. Meaning they think that his brain is being affected a TINY bit by all of this. SOOOO they wanted to check his Ammonia levels today. ****This just in**** Ammonia levels are okay. They are high but not scary high. I was also just told that Denise and Becky the two NNP's...okay I know Becky is a NNP but I don't know about Denise. Anyways they are going to start checking Ezra's reflexes every morning. Also Dr. Whidness (s/p) called Dr. Whittington last night, I'm guessing to talk about the lab numbers. Dr. Whittington said Ezra was still okay and that we didn't need to be talking about a transplant right now. WHEW!

I wanted to post a picture of Dr. Bell because he is and always will be an important part of our lives now. Beau and I feel really blessed that Dr. Bell was his Doctor at that time this all went down. I think Dr. Bell is one of those doctors that you pray for when going through hard times like these. I feel like he isn't just treating a patient but a family. I don't know if that makes sense. Dr. Bell got Dr. Whittington involved and still stays very much involved in what is going on with Ezra. To both of us that just really says alot about a man. He calls on his vacations for updates and checks Ezra's labs when he can. I guess what I am saying is that Beau and I are really impressed with this man. Not that people are wanting or needing our approval and what not. Anyways, Dr. Bell is now our friend whether he wants to be or not. He doesn't have a choice. HAHA

Ezra has graduated from a warmer bed to a crib. He also gets to wear CLOTHES! YAY! I think he is so much more comfortable in his crib than he was the warmer bed. Anyways the updates will keep coming so stay tuned.

P.S. Ezra is really swollen in the picture and that is partly due to the fact that he received a Platelet and Blood Transfusion as well as some Cryo. So LOTS of fluids.

Special Delivery from Chicago

Sarah has asked me to update her blog with all that took place yesterday with Dr. Whitington. First and foremost, it is such an honor to even be allowed into Sarah's sacred blog and I would just like to thank her for this wonderful opportunity. Despite my immense gratitude for this opportunity, I still cannot deny the fact that Sarah's breath smells like she just ate a poop sandwich. I am starting to think that those are her favorite things to eat. On to Ezra....

Yesterday was a very good day for our family and for little Ezra. Sarah and I arrived at the hospital at about 7:45 a.m. for an 8:00 a.m. meeting with Dr. Peter Whitington. We were both a little anxious for the meeting but thankful that he was willing to come and give his input on Ezra. When we arrived we were surprised to already find him along with several other doctors in Ezra's room. He immediately introduced himself and his first words to us were about how impressed he was with Ezra's physical appearance. He stated that Ezra appeared better physically than most other babies with NH that he has treated. So, this offered us some immediate comfort for the remainder of the meeting. He went on to say that the reason he decided to come to Iowa was: 1) to keep his word and, 2) to further evaluate Ezra and see what they would do differently in Chicago versus Iowa and what they would really be up against if he were to go there. He stated confidently that Ezra was perfectly fine here in Iowa and that there appeared to be no need to transport him to Chicago. He said that Ezra, at this moment is nowhere near needing a liver transplant and that he probably will not need one (let's hope). He told us that he has treated a number of infants successfully with far worse lab numbers and that were much sicker than Ezra without the need for transplantation. Comparing his numbers again to other infants that he has managed, Ezra's numbers were "above average". He went on to tell us that he felt Ezra's liver was in the healing stages for a few reasons. The first being his glucose levels. When Ezra was born he was hypoglycemic. He was given glucose to address this concern and his lab numbers showed a positive response to this. To him, that showed him that some of his liver was functioning. Also, since his numbers have been stable and have not worsened, he felt that that was also another sign that his little liver was recovering. It will just take time for him to fully recover, but he felt that Ezra would recover and regain full function with his liver. He even went as far as saying that he would like for us, along with Ezra, to visit him in Chicago in September so Sarah can participate in some of the on-going research that he is conducting. He recommended that the staff here not conduct lab work two times a day as they have been doing, but cut back to 2 times a week. Ezra's coagulation numbers along with his bilirubin levels are still high, but Dr. Whitington told us that these are the last things to improve with these infants. I asked him how long he thought this could take and he said that he has seen infants improve in a few weeks, with the longest being 3 months. So, again we will be here for awhile and that is OK. Just as long as Ezra gets better. By no means are we out of the woods but Dr. Whittington gave us a few more rays of hope. Sarah and I felt very blessed to have Dr. Whitington come to Iowa just for our little son. Throughout this process we have expressed to each other multiple times that we haven't felt alone. The Lord's hand has been made evident during this time and we are so grateful for that. We are so grateful also for the doctors and staff that have taken care of him (and for the one reading this blog, you know who you are). They have all been great. Thanks to everyone for your support and prayers. It has been so wonderful to see and feel your love.

Still going Strong...

So everything is pretty much the same here. Ezra's labs keep going up and down. It really is a never ending roller coaster. They tell us that his labs will go up and down so to not get too hopeful when they are going the way we want. To be honest that is the hardest thing. Beau and I catch ourselves always getting hopeful and then socked in the gut again. It is totally our fault but anyways. Beau and I still believe that Ezra will be okay. It is going to be a long haul but he'll be okay. Dr. Whittington is coming tomorrow and both Beau and I are extremely anxious to hear what he has to say. Hmm...Anxious and yet afraid at the same time.
Everyday I pray for faith. I pray that my faith will stay strong even though the unknown is so scary right now. I know that I'm jumping all around in this post but I'm just trying to get my thoughts down for the day. Ezra has been given a bit of morphine the past two nights because of how uncomfortable he is. They have his high flow on 6liters. Uhh..High Flow has something to do with the oxygen he is on. Sorry that is all I know. Anyways, 6 Liters is the highest it will go, and so all day and night he is getting all this air in his little belly. Now imagine how it feels when you have gas pains. Imagine that for a tinsy little guy who has to deal with it all day. Beau and I were a bit frustrated yesterday because it is so hard to see your child uncomfortable or in pain and not be able to console them or do anything but try to shove a binky in his mouth. Whew okay I'm done rambling but anyways we will keep updating.

Visitors...

Ezra has had some wonderful visits from his grandparents and brother and sister. Anne was in town to help us out right after Ezra was born and so of course she was able to come and visit him in the hospital. Right after her my mom came out and then my dad came out for the weekend. We are so thankful for all the help we have been receiving during this time.


Tucker and Tilly LOVE to visit their "Baby Ezra" in the hospital. Tucker is always asking if he can pet Ezra. So cute. Tilly wants to visit all the other babies here in the hospital as well. The kids are always praying for Ezra that he will get better and come home soon. I like how excited they get when they do get to come and visit their brother. Seeing Ezra has made it more real for Tucker and Tilly, so I think they are handling mommy and daddy being away so much a little bit better. Granted it is still hard on them but not AS much.

Beau has been staying the night here with Ezra so that the little guy knows that we are always here. I don't really know how much sleep Beau gets at the hospital but he doesn't care. Beau, would rather go with out sleep then have Ezra be alone. Thank you Beau for being such an amazing father.
p.s. I would stay but Beau insists I go home to "recover". I think he just likes his special bonding time with Ezra. Which is fine...I'm okay with that.

What a day...

Well today Ezra greeted both Beau and I by being wide awake. Today the Doctors let Beau know that they were starting Ezra on the Fresh Frozen Plasma again but instead of giving him 4 cc's an hour it would be 2 cc's an hour. They gave him another dose of the IVIG lastnight as well. Dr. Seger (who is the doctor for Ezra right now) also told us that Dr. Whittington would be here Sunday night and would like to meet with me and Beau Monday morning. I am so anxious to hear what he has to say to us about this. The abdominal ultrasound came back and they told us that it all looks fine. I believe they were checking the blood flow and what not to the liver.
Lastnight before they gave Ezra the IVIG they had to put another IV in little Ezra's hand and it now looks like he has a boxing glove on. Poor little guy. Oh yes they also gave Ezra another dose of Lasiks today. Lasiks are a dieretic to help him get rid of some of the fluid that is built up in his body. I'm going to have to say that through all of this Ezra has been quite the little champ. He's a tuff little man that is for sure. The only thing that really bothers Ezra besides being hungry is his gas. Because of the oxygen he is on he gets so much air built up in his little tummy and it hurts our poor little man.
I have a ton of pictures to post so here are just a few from today and I am trying to get all the other ones organized.

Update on Ezra

Well, we have absolutely no idea really what is going on now with Dr. Whittington. He may or may not come out here. Also they are taking Ezra off of the Fresh Frozen Plasma today to see how his Coagulation numbers are with out recvg the FFP. In case most of you don't know, N.H. causes problems with the blood clotting. So Ezra's blood isn't clotting how it should so they are constantly monitoring him for bleeds. They monitor him by doing daily ultrasounds on his brain and today they are going to do an X-Ray and an Ultrasound of his Liver. SOOOOO....siiiiiiiigh. Okay we got Ezra's lab numbers today and they looked a bit better, so we are hoping that when they take him off of the FFP they don't sky rocket or decline when they aren't supposed to. I know this isn't making sense to most of you but I'm trying my best to write out what is going on in my head right now.
Once again we just want to thank everyone for their prayers. I do believe in the power of prayer and I am so thankful that so many have been said in our little mans behalf.

p.s. I will put alot of new pictures on here tonight. I have Beau's computer so I can't upload them on here.

Ezra Cotton Ross

Ezra was born on June 30th 2008 at 11:11 am. He is a beautiful baby boy. Ezra was born with a very rare condition called Neonatal Hemachromatosis. It is a condition in which the mothers body produces antibodies that attack the baby's liver. I know there are alot more specifics that go along with this but it really is too much for me to write out. I will have Beau do a post about it and explain it better. Beau and I feel very blessed to be here in Iowa right now. Ezra has been receiving some of the best care possible here. Dr. Bell has been Ezra's doctor and we just love him. He is so involved in Ezra and what is going on with him. Another reason Beau and I feel so blessed to be here is that Dr. Whittington who specializes in N.H. is located in Chicago and is working closely with the team here regarding Ezra's care. I was actually just notified by Dr. Bell that they were able to get Dr. Whittington to come here and evaluate Ezra. If needs be we will transfer Ezra to Chicago to be under the care of Dr. Whittington and his team. We will see what happens and keep updating as we go along.

Floods...more floods...and Summer Fun.

Well we are alive here in Iowa. AND we have a new camera so we have a TON of pictures this post. Alot has happened that I haven't blogged about so if sometime down the road I throw something random out there just go with it.
First here are some pictures of the flood that Beau and I took. This is about 3 miles from our home.
I have a TON of spelling errors in this post because I couldn't really see the words I was typing so just ignore it because I'm not going to go through and fix it.
{CLICK on picture to Enlarge}




So sad to see all of these buisnesses and homes destroyed. A bit scary as well. This is the first time I have ever really been in a flood. It sure is scary what mother nature can throw at you within a blink of an eye.
Now onto some more positive pictures. SUMMER FUN! WOOOOOO HOOOOOOO! We love warm weather. I keep trying to really drive that point home to Beau. WARM WEATHER....HAPPY WIFE AND MOM. hahaha. Anyways enjoy the pictures!
These pictures were taken outside of the Iowa City Library. The kids and I played outside while Beau did "school stuff".


Pool time! Need I say more.



Now for the BEST part...

p.s. the grey van in the back is the newest addition to our family. HAHAHA