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.