Two stressed out parents going crazay…..
Now that we all think we are Snoop D-O-double G, let’s move along. As parts begin to move toward coming home, many questions arise regarding what needs to be done, but feel much less overwhelming than the ones about how in the world we are going to be able to do this. From the second he was born, Ren has been surrounded by a long list of things that will not be going home with us: neonatologists, neurologists, geneticists, metabolic specialists, nurses, respiratory therapists, lactation consultants, speech therapists, physical therapists, occupational therapists, breathing/heart rate/pulse-ox monitors, giant syringes filled with milk being pushed through his nasal feeding tube by another machine, and of course the emergency response equipment. Now, let’s talk about what we know he is going home with: mom, dad, and an oral suctioner. There are few other things we are doing our best to get, but nothing is certain at this point. The one other thing that we know we will be going home with that isn’t on either list is a pump for the G-tube we have decided to opt for.
A G-tube is basically a direct line into a person’s stomach, accessible through a “button” that is on the belly. Currently, Ren gets his food through a tube that is routed through his nose, down his esophagus, and into his stomach. There are some limitations and risks involved with going home with this type of feeding tube, so after much discussion and consideration, we have decided that the risk and physical stress it (surgery) will put on Ren are less worrisome than the risks involved with taking him home on a nasal feeding tube. As an added bonus for us, we will finally get to see our little boy without any tubes attached to his face. Of course, this means that Ren will no longer suffer the discomfort of a tube being taped to his tiny little face and shoved up his nose. If anyone is wondering what the risks of the nasal feeding tube are, it basically has to do with the potential of it getting moved around, pulled out (completely or partially), and having the end get routed in a way that would send milk right into his lungs. So tomorrow we will meet with the surgeons to discuss that procedure that we are scheduled for on Monday.
Next week will present many challenges for all of us. For Ren, being forced back onto a ventilator for surgery is heartbreaking after he worked so hard to get himself off of one. We have been informed that getting back off of it, again, could be a bit more difficult for Ren because of his low tone, but we have a lot of faith in our little guy. For us, we will be taking CPR classes, learning everything there is to know about G-tubes and pumps, and doing our best to make sure we have addressed everything related to insurance, in-home care plan, and made contact with every resource we have been presented with. Once we walk out those doors, there is no turning back. Even in my early days of skydiving, I never felt this level of anxiety about anything; it makes jumping out of plane seem as uneventful as brushing your teeth.
Despite the list of uncertainties and nerves, getting Ren home couldn’t come at a more crucial time. As of yesterday, Ren is exactly one month old and is not tolerating the hospital environment the way he has been. He is wanting to be held more often, especially during and after feedings, and those are needs that we will be able to better meet at home. As anyone that has spent any amount of time in a hospital room knows, it is not somewhere you want to be for any longer than you absolutely have to be. For a developing baby, we feel strongly that at home with his family is where Ren has the best chance to be comfortable, happy, and to thrive. Well, a barium test and abdominal scan, a necessary step in preparation for Monday’s surgery, await us downstairs. Will keep everyone posted as things move closer to getting home.
Ren Wilde 
Will, Devona, and Ren.
Chrisi and I, as well as the kids will be thinking about all of you this weekend. I know based on conversations I’ve had with you and posts you’ve been keeping up on the two of you know what is best for your son.
Based on Ren’s track record I am very hopeful and encouraged about your decision, and hope that the surgery is successful. In addition, I hope the time on the ventilator is short and Ren weening himself off of it is not a big struggle for him.
I continue to hope for what is best for all of you and what I’ll lead to continued health and happiness.
I look forward to the news of how the surgery went as well as the upcoming test results you’ve patiently been waiting for.
Sending you all lots of love from your family in Illinois.
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What a beautiful and lucky baby boy to have two such devoted, knowledgeable parents loving him and caring for him. Like so many others, I continue to pray for him and for you and Devona and all of the challenges you have had and will continue to face. Will, your updates are so wonderfully expressed that I find myself in tears after reading them. And in awe of the strength and courage that you and Devona are exhibiting. Prayers sent that the procedure on Monday goes smoothly and that very soon you will have your precious little boy home where he belongs.
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I am a friend of Oma, and the mother of a special needs daughter. She is now 20 years old, and has been a huge blessing in our lives, in spite of the challenges. I want to encourage you that you will LOVE the G-button! I know it’s difficult to put Ren back under anesthesia for this procedure, but the benefits that will come from this easy access to his stomach will be amazing. I am so happy to join the scores of people who are praying for this little guy. He is absolutely gorgeous, and I love the video of him talking…precious!!
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Sending love and prayers on this big day!
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