Day 5 & 6 (Today)

April 1, 2010

Sorry I didn’t get on to post yesterday.  It was a crazy emotional day for us as you can imagine. I have a ton to update you on and so here I go…

Day 5 (3/31/10)

Yesterday was a very big day.  In doctor’s rounds, they decided that Joshua was doing well enough pulmonary wise that they decided to switch him from the High Frequency Oscillatory Ventilator to the standard ventilator to see how he would do.  They already had started to ween off the the Nitric Oxide (NO) and continued doing so.  Since he was doing well from a lung perspective, they were able to ween him from the NO at 9:30pm!  We were amazed and proud of the little dude for fighting so hard when challenged and exceeding the doctors’ expectations.  He surprised everyone!  This is exactly what the surgeon said that Joshua needed to do in order for him to consider surgery.  The entire atmosphere in the NICU here though seemingly is becoming negative about Joshua and whether or not he will be able to survive 3 to 4 major surgeries.  The consensus among the doctors is that he shouldn’t go through any surgeries because he most likely will not survive them all.  They have let us know their concerns many times.  I am glad they are letting us know their opinions but it sometimes seems that Kelli and I are the only ones fighting for him.  We see Joshua doing better and doing what the doctors want him to do yet the doctors are saying that it might now be the best thing for him to go through anything given that his odds of survival are very low.  Anyway, more about this on day 6.  Kelli had a super emotional day and really had a hard time putting herself back together but was able, with a lot of help from me.

On a good note, Kelli got to hold Joshua for the first time since they took him of the High Frequency Vent!  It was fantastic but did not last long because Joshua did not respond well to it unfortunately.  His heart rate dropped in half and other things but I got some pictures and an awesome video!  I will post the pictures here but the video will have to be seen of FB so go there!

Day 6 (4/1/10)

Okay so today was absolutely nuts.  Joshua is doing very well given his issues and has continued to surprise the doctor with his fight.  This is something that I will always love and cherish about Joshua is that he is fighting like no one I have ever seen.  The whole atmosphere in the NICU is continuing to become more negative and I am sure some of the nurses and doctors look at us like we are cruel to even consider surgery.  I can’t say that about all of them because most of the nurses and some doctors have been absolutely awesome and amazing throughout this adventure.  I still think that they do have Joshua’s best interests at heart but it makes this that much harder because Kelli and I feel like we are fighting harder for him than anyone else.  We are coming from the perspective of Joshua and what he wants.  He is telling us that he is trying and we can’t in good conscience take that away from him.  On the other hand, if we say to go ahead with surgery, we are asking him to suffer a great deal with only little odds of survival given the complications that can arise with the amount of problems he has.  We are in a massive conundrum.

Joshua had a bunch of tests today to assess his overall systemic functions.  Every day he gets a chest xray to check the condition of his lungs.  His lungs continue to look “wet” (lungs look fluid-filled, either by mucus or blood or a mixture of the two) but the overall capacity looks much more balanced now that he is on the standard ventilator.  The nurses are still pulling out fluid that looks at times bloody so that makes sense.  They continue to watch his blood gases and they continue to look fairly normal given his condition.  They also did a head ultrasound on him to check for signs of bleeding in the brain which is something that they watch in any preemie.  We will get the results for this tomorrow.  They also did another echocardiograph (ultrasound of the heart) as well to check on his heart function and pulmonary hypertension.  More on those results later.

Kelli and I met with the new head doctor that is on for the next 2 weeks today along with a couple other doctors to discuss where we are with Joshua and what our plans are to make sure we are all on the same plan.  That was good and went much better than I thought.

We also talked with the surgeon again to update us based on his plans for Joshua now that he is off the machines and “stable” (instead of an hour-by-hour situation, it is a day-by-day situation).  He stated that he will think about doing surgery next week sometime after Joshua has been stable over the next few days.  His approach has changed in that he will want to remove the meconium pseudocyst and fix the intestines first so that Joshua can eat through his stomach instead of being fed through IV.  Joshua’s liver is already showing signs that he is heading toward liver damage from the nutrition given through his IV so this becomes a priority over repairing the diaphragm since he has been stable on the standard ventilator.  Once Joshua has recovered enough from the first surgery, he will look at repairing the diaphragm. Good news!

Now the bad news.  We then spoke with the cardiologist today who did the echocardiograph and he told us that, Joshua’s pulmonary hypertension (high blood pressure in the lungs) is so bad that all the blood is going to the other parts of the body and can’t flow to the lungs.  This is because he has reached a point that the blood pressure is lower in the rest of his body.  This is very bad and the dr. said that if Joshua had a normal heart, that he would have already died.  Since he has a big hole in the heart, the blood is able to flow to the other side of the heart and mixes.  If the hole wasn’t there, the blood would have no where to go and would result in right sided heart failure due to the increased pressure beyond what the heart can handle.  He also said that if Joshua’s heart was repaired, this same thing would result because it would block cross flow thus increasing the pressure in the right side of the heart.  So, there is a catch 22.  On the machines, Joshua can survive because of the help but will not survive for long off the help because of the mixing of blood which then causes poor circulation in the body.  All of these are bad.  So, basically what this doctors are now telling us is that they would not recommend treatment at all for him.  This makes sense if it is true because why put Joshua through 2 or 3 extensive surgeries to not survive the 3rd surgery.  That would be cruel and would torture him for no good reason.

So at this point, it doesn’t look good for our little fighter man.  He basically has no hope in NM at this point.  What I am now in the process of doing is trying to obtain a second opinion through Dr. Crombleholme at the Fetal Care Center of Cincinnati.  Once he has the whole picture, I want to hear what he has to say regarding Joshua since he is the best in the country, if not the world, for dealing with the Heart Defect with CDH.  If he confirms what the cardiologist stated then we know that he does not have a chance.  This is where we have to make a decision on what we do with Joshua and his many defects that each require extensive surgery.

I just can’t believe that it has come down to this.  One more piece of information is all that stands in the way of Joshua’s future.  Please pray that God will be there with us and that God’s Will be done in this situation.  Pray for us that God will give us the strength and peace we need to get through one of the worst situations anyone could ever go through.  Please pray for Joshua since he is the one that is going through this physically.  This is a tough situation and we love Joshua more than we could ever imagine that we could love him.  We are thankful, happy and feel blessed to just have had 6 days with him so far!  Hopefully, we will have many many more!  Thanks for everything guys!

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14 Responses to “Day 5 & 6 (Today)”

  1. nicolle said

    I hope for many more too! Many prayers for you and your family. This is such a difficult thing to go through many prayers (((HUGS)))

  2. Beth Brown said

    Peace and Prayers and Guidance and Love and Time.

  3. Mary Campbell said

    I so love this picture of Kelli and Joshua! I am so happy you finally got to hold our sweet little fighter man! I am praying so much and so hard for him and for God’s will in all of this. I am blessed beyond measure to have this time with Joshua! This is so much more than we ever had even hoped for! I pray that we will have many more days with him if God so chooses. I love you all so very much! And thank you to everyone who is praying for our sweet Joshua. May God bless you all richly.
    Mary/Nene

  4. Lauren said

    Kelli and Jeff–

    I am at this moment lifting you and your handsome Joshua up to God as I sit in my church, near midnight, praying for God’s Will and overwhelming peace for you both as to what is best for your son.

    Peace be with you, I pray.

  5. Gayle Geer said

    Fervent prayers for all of you: Jeff, Kellie, Matthew, Joshua, & Mary.

    I just read through most of the posts about Joshua. Wow. You guys have really been through the fiery furnace. It is so good to hear that you are leaning hard on our Lord, desiring His will for Joshua and all of you. God is so faithful and loving. May you always feel His presence and strength, especially at this time.

    I have been through some hard things with family & friends and their health issues, but nothing this challenging emotionally, mentally & physically.

    I also admire you for fighting for your son, no matter what the doctors are saying. Joshua’s value and purpose is far beyond what we can imagine and what the doctors and nurses can comprehend.

    The experts gave Judy Ravert up for dead a year and a half ago, but God–my favorite two words in the Bible–had another plan. They said she would not survive the first surgery they had to perform on her. They were shocked when she survived. a few days later they said she was not going to live more than a few days.

    Today Judy is stronger and healthier than she has been in years. God had His way, as He always does.

    I understand your conundrum. Perhaps this slogan will bring you some comfort and courage as it has me over this last difficult year: “Suit up and show up.” That’s all we have to (and can) do. The truth is, we make the effort and God brings the results.

    I think of “suiting up” as putting on the full armor of God. Then we “show up” and say “Here I am, Lord. Do with me as You will.” And we trust Him to show us what He wants us to do, and aske for the wisdom and strength to do it.

    Have courage! God is in control! And He is so good! And if God is for you, who can be against you?

    I know you all know this, I’m just reminding you. (c:

    Love and hugs and blessing in Jesus,

    Gayle
    (trying to live one day at a time)

  6. Tracy Meats said

    Praying for Joshua…keep fighting little guy. Praying for the entire family, that you are surrounded by much love, peace and comfort in the days to come, whatever decision you have to make for your warrior. I hope you have many more days with Joshua too. I think getting a second opinion is the right thing to do too. I do know there are several cherubs (from reading the forums at CHERUBS) out there with holes in their hearts (the size of the hole, I don’t know) that have not been repaired. They do have severe pulmonary hypertension and on medications.

    Stay strong for Joshua. I think the negativity too, is the doctors at NM seemed to give you no hope regarding Joshua when he was in the womb. Joshua has already proved them wrong 100%!

    Praying for Joshua and your family.

    (((HUGS))),
    Tracy, Ian’s mom from CHERUBS

  7. Kathy L said

    You don’t know me but Melinda has been keeping us updated regarding Joshua. As I was reading these replies, I was wondering what I could say to encourage you…especially since I do not know you and have not been through this experience. I especially loved what Gayle said about “Suit up, and show up.” I would second her message. Other than that, I just want you to know that I care and am praying for you and little Joshua, for wisdom and skill from his medical caretakers and doctors, and for wisdom, peace, comfort for you. I cannot even begin to imagine how difficult this is for you. For little Joshua, I am thanking our Father for him, praying for healing and asking for him to be comforted and have strength to accomplish all that God has called him to do. Holding you all in my heart, Kathy L

  8. Cheri Rolett said

    Jeff & Kelli,
    Your mom and I have been friends since high school. I met you before in CA when we came to visit. I’ve been keeping up with Joshua through Mary. I know you have many prayer warriors but your mom has never lost her faith in God with all that she’s been through in her life. All that to say your mom is one of the best prayer warriors you can have interceding for Joshua. Please know that we and many other people in Arkansas are lifting you and your family up in prayer. Our daughter is an RN at Arkansas Childrens Hospital and worked 5 years in the NICU. She has taken care of babies like Joshua
    so she knows what you’re going through.
    I pray fir strength and courage as you make decisions on behalf of sweet Joshua.
    We love you and your family very much!
    God bless you and keep you in his care.
    Cheri Rolett

  9. Linda Mages said

    Jeff n Kelli,
    I posted Joshua’s story and blog site on my profile page yesterday… and my fb friends are commenting and praying like crazy!! …here is a private message a friend i went to Norco High School with, sent me. (as the majority of my fb friends are my N.H.S. Alumni)… My love and prayers continue for Joshua.. he is such a miracle baby.. and so beautiful! Linda.

    Susan Rhoads April 2 at 10:19am
    Right now God is the one to be praying to without ceasing. Our pastor and his wife had a son that was basicly dieing at 1 week, they then discovered what all was wrong with him, at 10 days they did open heart surgery, and over the years there was numerous things, as he was missing a lot of parts and should never have lived, but he made it through 4 open heart surgeries till at 17 he had to have his last one they could do, there was many problems that went wrong during the surgery and days later he went home to his heavenly Father. The miracle through all of this is that he was given all those years and touched so many lives when he shouldn’t have ever made it. So that is why I say pray without ceasing, cause God is the answer…
    I was going to respond on the wall, but thought maybe I should just send it to you. We have a prayer list, we will add him to it, as well as your friends.

  10. Linda Mages said

    Jeff and Kelli,

    Here are comments on my thread from my posting yesterday about Baby Joshua… hope they bring you comfort… love you guys… and prayers continue…
    xoxo Linda. ❤

    Berta Bowlin They will be in my thoughts and prayers
    Yesterday at 11:19pm ·

    Linda Proffitt Mages Thanks Berta!! ♥
    11 hours ago ·

    Berta Bowlin OH MY GOSH! !!! I have just finished reading their story and my heart is aching for them. But I know God has him in his hands .Hopefully it is in his plan for Joshua to be a miracle above all odds.May God bless them and give them strength and understand
    11 hours ago ·

    Berta Bowlin I have just read about a couple who have a new born baby boy named Joshua.Against all odds he is still alive but is in very bad condition. PLEASE PRAY for Joshua his family and the medical staff taking care of him
    11 hours ago ·

    Linda Clement Vossen I'll be praying for little Joshua. He sounds like a fighter, and miracles do happen!
    10 hours ago ·

    Alma K. Powell Mills My prayers are coming to this family and baby as they go through this rough time.. God Bless them all.

    Linda, My Audra was a premie, she hnd no foot prints or hand prints, she flesh was not attached to the breast bone, she was less than 4 pounds and 13 inches long, she was full term, I was just very sick during my pregnacy, she has 2 beautiful …
    See More
    6 hours ago ·

    David E. Bynum With a name like Joshua Levi how could anything go wrong. I wish him all the best.
    6 hours ago ·

    Sharon Booher Johnson I'm praying for God's blessings for the little guy.
    5 hours ago ·

    Joan Hupp De Long Thoughts and prayers are with little Joshua Levi and his family.
    4 hours ago ·

    Elaine Nelson Smith Prayers for little Joshua's complete development, good health and peace for Kelli and Jeff. Amen
    4 hours ago ·

    Lori-Laura Kammel-Miller Joshua will be in my prayers as well as Kelli and Jeff. The Lord works in mysterious ways..I'm sure he will take care of this family..God Bless them.
    3 hours ago ·

    Sonia Salgado Anaya My prayers are with baby Joshua and his family. May God give them the strenghth to make the right decisions for their precious baby.
    3 hours ago ·

    Linda Proffitt Mages Again, you all overwhelm me with your loving comments and prayers… thank you so much… I know they will deeply appreciate your support and encouragement, and I hope you keep up with their daily blog… xoxo ♥
    2 hours ago ·

    Geri-Ann Hasterok-Jimenez My prayers are with Baby Joshua! love to all, Geri
    about an hour ago ·

    Melinda Mages Kelli was my roommate for 2 years and Jeff and her are two of my best friends. Thank you all so much for your amazing comments and prayers!
    45 minutes ago ·

  11. Jennifer Tenney said

    (I posted part of this on Cherubs as well) I’m sorry Jeff … it is the hardest thing, what you guys are going through. I read your blog … is there any way of getting Joshua transferred to Cincinatti? He is such a fighter … it just seems like he should be given a chance. Your entry today brought me right back to the early days of Dakota. She was born at 32 weeks and 5 days with RCDH and on her 2nd day of life she needed ECMO. Most hospitals would never have even considered putting her on ECMO because of her premie status and the risks, but I got lucky and our doctor believed in her and we decided that if we were going to go down, we were going to go down swinging. Obviously, it is a situation by situation basis but I don’t think you are going crazy, I think you need to find a doctor to believe in Joshua as you guys do.
    On Cherubs, there is a little survivor, Kiyari, who has a hole in her heart and pulmonary hypertension. Same thing happened which you are describing, she had the repair of her hole and her pulomonary hypertension skyrocketed, causing her to have a stroke, so they went back in and reopened the hole and she stabilized. She is now at home, doing well, with a hole in her heart. They will try again in a year. Pulmonary hypertension, from my understanding, is something that can resolve itself over time, and the cdh surgery may help by taking some of the pressure off of the heart.
    Don’t lose hope! Miracles happen!!!!
    Hugs!
    Jennifer
    Mom to Dakota 12-25-2008
    RCDH/Premie/ ECMO survivor
    JenniferTrafton@hotmail.com

  12. Linda Mages said

    Alma K. Powell Mills My prayers are coming to this family and baby as they go through this rough time.. God Bless them all.

    Here’s another comment from my thread…

    Linda, My Audra was a premie, she hnd no foot prints or hand prints, she flesh was not attached to the breast bone, she was less than 4 pounds and 13 inches long, she was full term, I was just very sick during my pregnacy, she has 2 beautiful girls of her own now and doing fine, They said so many things could and would go wrong, but I just gave her to the Lord and said she was yours before mine, Do what you will.
    7 hours ago ·

  13. HShaner said

    You are not alone…He will reveal Himself to you, when the time is right.

    Love you

  14. Kristin Camden said

    I am praying for you guys, Jeff and Kelli. I pray that you witness the magnificent power of the Lord as you press forward through the leading of the Holy Spirit. Your sweet little boy is a gift from the Lord and an obvious fighter! Thank you for keeping us updated. Blessings to you both! Kristin

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