First of all, I want to apologize for keeping you all waiting to hear about Jude. I thought about writing...but there wasn't much to share. Mostly we were just waiting and enjoying our boy. Jude has been surprisingly content and happy since his major freak outs on Sunday and Monday. He has even been smiling at me and his sweet nurses. It has been SUCH a blessing to see him so happy. He has been acting much more like himself despite having a ventilator tube in his mouth. Praise our gracious God for allowing Jude to enjoy such good days!
So, I must give you a little bit of a back story for this blog post...
Many of our readers know that my baby sister, Rachael, survived a terrible car accident and brain injury many, many years ago. During the months that followed Rachael's accident we saw many glimpses of the Lord's promises. One way that we felt like the Lord was directly communicating with us was through rainbows. The first instance was when my grandparents got the news about Rachael's accident and injuries she sustained. As they pulled up to the hospital and they spotted a rainbow above it and many, many rainbows were spotted during the darkest days and during Rachael's recovery. We really think that the Lord placed rainbows throughout my family's lives as a reminder that He was with us always and that he still performs miracles. And he did. And he has. And he will.
That being said...let me tell you about today!
Yesterday was frustrating because we anticipated getting answers about the plan for Jude's care...but yesterday came and went without answers. I came to the NNICU this morning feeling discouraged but determined to get some answers.
Later in the day, the neonatologist and the surgeon spoke and made a plan for Jude's care and it was communicated to me that the surgeon would be by to discuss it with me. I waited around for a few extra hours to be sure to speak with Dr. Hebra and in the meantime I got plenty of time to hang out with Jude and hold him. Jude was so sweet and happy. We played together and he is really enjoying kicking his toys with his cute little feet. If he didn't have a tube in his mouth I swear he would be laughing now.
At one point, the respiratory therapist and Jude's nurse (Erika, who I am sure Jude has a crush on!) were adjusting his ventilator tube and he was freaking out a bit. I was a little distressed to see him upset and stepped back to try to settle down...at that moment the social worker walked in to tell me some upsetting news about some insurance/billing issues...and then the neonatologist stepped in to convey to me that he was certain that Dr. Hebra would be by he just wasn't sure at what time. I felt like the world was spinning out of control.
I walked out of the NNICU to pump and to try to call Brian and my mom to update them on what was happening with Jude and our insurance situation. But my cell phone battery died. I felt so overwhelmed, so alone, so worried and honestly I just wanted to give up completely. My sweet son is so sick and I just want him to be well and home. And on top of all of my worries for Jude it felt like everything else in our lives is just all over the place. We are so, so weary. And I stopped and prayed...I asked the Lord for mercy. And honestly, I asked him "Please show yourself to me. Where are you? I need you!" I felt much like David might have felt when he wrote the Psalms.
I returned to Jude's beside and Jude's nurse, Erika, and another nurse nearby that we also love (Sara C.) told me that they saved a big slice of chocolate cake for me because they felt that it was a chocolate kind of day! They told me that the piece of cake was waiting for me at the front desk when I was ready. So sweet and thoughtful of them. I truly cannot express how thankful I am for the amazing nurses in our lives!
Soon I was informed that Dr. Hebra was in the conference room and was ready to meet with me. I was ready...but nervous.
Here is what was communicated:
Weeks ago the plan and hope was that Jude could continue receiving feeds of breast milk to help him grow bigger and stronger. Another hope was that Jude's respiratory status would remain stable while he grew bigger and stronger. And as you all know, neither of these things have happened for Jude. He has continued to need more and more respiratory support. He has grown (praise God for that!) but feeds have been a bit of a struggle and it may be possible that feeding him is causing his intestines to push on to his lung and causing respiratory problems.
Dr. Hebra feels that we have tried to help Jude reach these goals, but at this point pushing him to try to meet these goals is no longer beneficial. And now he thinks that it is time for Jude to have his 2nd repair surgery.
So, that is where we are now. Jude will have surgery on Monday or Tuesday.
This is still a very risky surgery. Dr. Hebra is not excited about doing Jude's repair surgery because it will be a big challenge. He is planning on having a second surgeon help him with Jude's repair too. There is still a great possibility that the adhesions could make Jude's surgery very difficult and Jude could suffer from major bleeding as a result. It is also likely that Jude will reherniate....although it will likely be much further down the road.
We greatly covet your prayers for Jude's body. Please join us in praying for very minimal adhesions and for no bleeds. Please pray for Dr. Hebra and the surgeon who will be assisting him. They have such a difficult job ahead of them. Please pray that Jude will remain healthy, happy and stable until his surgery. Please pray that his body will remain strong and ready for such an invasive procedure. Please pray that all sickness and infection will stay away. Please pray for a SAFE and SUCCESSFUL surgery.
So, back to the rainbows. After my meeting with Dr. Hebra I went back to Jude's bedside and he greeted me with a smile. I played with him for a little while and decided that I should head back to the house and spend time with my sweet Annabelle. On my way out I stopped by the front desk to pick up my chocolate cake. I decided to take my cake to the waiting room to sit for a few minutes to reflect on the day's events. When I arrived I found the waiting room empty and I decided to sit in a chair that was next to the big window that looks down into the play area for the sick children (and their siblings). There were a few children playing and as I ate my cake my eyes fell upon a huge painting that was drying on a table. The entire page was drenched in paint with a RAINBOW.
The Lord is good. He is with us ALWAYS. Even in our darkest hours he is faithful and present. And I am certain that he can perform miracles...please join me in praying for one for our sweet Jude.
We love you all and will keep you posted on a date and time for surgery.
P.S. A fundraiser yard sale is being planned by a good friend of ours in the upstate for an up coming Saturday. Please check our blog in the next few days for details.
P.P.S. I know that many of you have been asking for ways to help us right now. There may be a few updates to the Manna for the Moment blog in a few days to share tangible ways to help.
P.P.P.S. I also forgot to mention that Annabelle, my dad and my grandmother all spotted rainbows THIS week. Amazing.