Weekend in the Hospital

March 22, 2010

The weekend at the hospital was uneventful thankfully.  The most excitement we got was the nurses coming in at all hours to check on Kelli.  Didn’t get many visitors (Thank you to those that did visit) which is understandable since the whole world seemed to be celebrating except for us.  I have to say congrats to my cousins James and Jackie on the birth of their son Samuel on Saturday morning.  I am glad that he was born perfect because I would never in a million years want someone else to go through what Kelli and I are going through with our unborn son.  It actually breaks my heart to know that there are families out there going through this very thing right now at the various hospitals around the US and the many families I have met through CHERUBS forums that have already gone through this stuff.  I hate it and it makes me glad that this life is not all we have.  That is in fact what makes something as horrible as this, bearable (at times.  ask me in 10 minutes hehe).  Also, I would like to say congrats to my cousin Amanda and her Fiancee PD who had their wedding shower on Saturday as well.

It was definitely a day of celebration on Saturday for our family.  Unfortunately, we couldn’t be there for any of the celebrations.  Also, saturday was just a very tough day for us in general but we received some terrible news as well.

We took a tour of the NICU here at UNM Hospital.  The nurses let Kelli go as long as she rode in a wheelchair.  We were asking a bunch of questions and they decided to grad the doctor on staff at the time.  He looked at our chart quickly and then sat us down to talk with us.  He was answering our questions and was being brutally honest with us which is what someone would want from a doctor.  I asked him how many CDH patients they had last year and he said they only saw maybe 2 cases.  That tells us a lot since the big centers see 25 CDH patients a year or so.  He also said that with Joshua’s combination of defects and Down Syndrome, that it didn’t look good for us.  His words are engraved in my head along with his expressions on his face.  His exact words were, “I don’t like to use the word impossible, but…”  That will never leave my head as long as I live.  He said that he would echo what UCSF and Children’s Hospital of Philadelphia told us in that he would not recommend treatment at all.  The doctor here stated that the Down Syndrome can carry with it many unseen problems that could further complicate the predicament Joshua is already in with the two major defects as well.  It is just very tough to hear this news no matter how much you already know in your head.  Basically this tells us that if Joshua is born in NM, he won’t make it unless God heals him of his infirmities.  The next step for us, I suppose,  is to hear what Children’s Hospital of Cincinnati has to say about his predicament.  If they tell us the same thing, then we most likely won’t go and would have to make some very very hard and gut wrenching decisions.  Decisions that no parent should ever have to make.  I hope it doesn’t come down to that but I guess ultimately, it is not up to us.  If it was, I would gladly have chosen not to be in this position in the first place.  If there was anything I could do about it, I would gladly give up my life for his.  Unfortunately, I can’t and it makes me feel helpless and completely broken.  We should hear something this week regarding Cincinnati and that should help us make some final decisions regarding his care.

The good news is that Kelli has stopped leaking amniotic fluid and we haven’t seen any for a few days now.  The doctors here said that they would like to do a bunch of tests to assess her situation and if everything looks good, they will send Kelli home on bedrest.  At least we can finally get some “rest”.  It is quite impossible to rest in a hospital but I do not feel any different really than before because I wasn’t sleeping then either haha.  So, I guess it doesn’t matter from a rest point of view.  What will help is being with Matthew again.  He helps us in so many ways going through this.  I couldn’t imagine getting through this without him because he is such a joy in our lives.  I went home yesterday for about 5 hours so that I could spend some time with him and it is just what I needed after a most emotionally excruciating day on Saturday.  He also needed his daddy and we had fun together.

Anyway, the time is winding down on one hand.  Soon, we will know what we are doing and where we are going.  Of course, the actual fine details we are a long way from figuring out but we should at least have a place and time frame for Joshua’s delivery nailed down.  Once, we have this figured out, the hard part actually starts.  The hard part will begin once Joshua is born.  Seeing him in pain and suffering is going to change who I am as a person forever.  We will broach that when it comes I suppose.

Thanks for all your support and prayers.  We are going to need a lot more support and prayers as these events wind down and the craziness begins.  Pray that we will stay level-headed in order to make the best decisions for Joshua.  Pray for Joshua to give him the strength he will need to fight.  Keep praying for a miracle as well.  Thanks again for taking the time out of your day to read this and praying for us in our most dark of days.


4 Responses to “Weekend in the Hospital”

  1. nicolle said

    I have tears streaming down my face. I am sorry that the drs. dont have more answers for you. I think of you often and hope that Cinci gives more hope. I wish I could say something that would help, I know there is nothing that will. Sending you lots of love and big hugs!

  2. Jennifer Tenney said

    Thinking of you. I am so sorry for all that you are going through, it definitely brings back flashes of those uncertain and dark times. What is very clear, even to a stranger like me, is that you are wonderful people who are doing everything they can for their son … that is all that you can do. Cincinnati is a wonderful hospital and I hope that they will take your case; if they will not, if you would like a second (or actually 4th or 5th opinion) our surgeon, Dr. Kays at Shands Hospital in Gainesville, Florida is one of the top doctors for CDH in the country and is more optomistic and hopeful than most. I do not know, however, that he specializes in multiple defects. If you want his contact information, please e-mail me at jennifertrafton@hotmail.com, or if I can help with anything else.
    I will keep praying!
    Mom to Dakota 12-25-2008
    RCDH/premie/ECMO survivor

  3. Brad said

    Continuing to pray for Joshua Levi. Posted more prayer requests on the Crossroads Prayer Wall : http://www.crossroadschurch.com/prayerwall

  4. Tracy Meats said

    Praying for your family. Praying that whatever decisions you have to make for your family in the weeks to come, you are surrounded by much peace with those decisions. I hope you hear from Cincinnati soon and you have options. I cried reading your part about going home to see Matthew. He is so young and doesn’t understand why mommy and daddy are gone and sad. Praying for your other little boy during this journey too. Hope you and Kelli get to go home soon and I am sure Matthew is just what she needs, a hug and a smile from Matthew will make her day.

    You can tell you love Joshua and would do anything for him. Praying for your family and especially precious Joshua.

    Tracy, Ian’s mom from CHERUBS

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: