Tuesday, December 13, 2011

One Week Old

Jude is one week old today! We are thankful that we have had this week with our son, even though it has been very taxing for everyone involved. In honor of his one-week birthday, Jude had an afternoon date with his mommy. :)

There were no significant changes to Jude’s status or treatment today, so it was another day of rest for him, and one that hopefully gave his body another day to recover and reverse the negative impact of CDH on his lungs and heart. His blood gases have continued to look good while he’s been on ECMO, which ultimately means that the medical staff are giving Jude the support that he needs. He’s continued to urinate at a good rate, which pleases the medical staff and further demonstrates that his kidneys are functioning well.

Jude was a little agitated yesterday evening, so the nurses increased his medicines (particularly his sedative), which allowed him to rest more easily and comfortably today. Although it’s not ideal to continue to administer greater amounts of sedatives, Jude has made a habit of fighting and becoming irritated when he’s been in more wakeful states. With large catheters inserted into his neck; an IV in his hand; lines in his belly button; little monitors on his chest, hands and feet; and a catheter for his urination, it’s certainly easy to see why our little man might be uncomfortable. Although Rose and I have absolutely loved seeing Jude awake and looking into his big, beautiful eyes, it has also been heart wrenching to see him struggle with his feet drawn up to his chest, his arms shaking, his face flushed a deep red. We love him so much, and it kills us to see him so frustrated and possibly in great pain. Against this agony and the various consequences that can result from it, the alternative of greater sedation and increased comfort is definitely preferred.

Rose got to spend some good quality time with Jude alone this afternoon, as I (Brian) was unable to see him since I’m still getting over a cold or something like it. I’m thankful that Rose had this time with him, but I’m missing him very much and hoping that I’ll be sufficiently on the mend to re-enter the NICU soon, even if I have to don a mask to keep from spreading potentially germs in such a sensitive environment.

Beyond praying that the Lord would bring healing to Jude’s body in general, we have several rather specific requests that we would like you lift up as you are able:

  • Jude’s right lung has fluid in it that must go away before he can come off the ECMO unit. The primary method for removing such fluid is by inserting a long needle into his lung and drawing off the fluid, but unfortunately Jude is on a blood thinner that would make inserting such a needle risky as it could cause internal bleeding. Several other measures (e.g. a medication, respiratory therapy, an ECMO component to draw off fluid) are in place that will hopefully help remove the fluid from Jude’s lung, even if they aren’t the doctors’ first choice. Please pray that these measures are effective!
  • Jude’s bowel (i.e. his intestine and at least part of his stomach), which is currently in his chest, has air in it that needs to be removed. His doctors are taking some steps to decompress (i.e. remove the air from) his bowel before he comes off ECMO. Please pray that Jude will remain relaxed while on ECMO, that no additional air will work its way into his bowel, and that the doctors can more fully decompress it in the coming days.
  • Finally, one of the biggest (if not the biggest) concerns in the coming days and weeks is related to Jude’s pulmonary hypertension. Although it might be redundant to explain this again if you’ve already been reading the blog for some time, in a nutshell pulmonary hypertension is high pressure in the blood vessels of the lungs. This condition, which can be regarded as a disease by itself and can occur independently of CDH, makes it difficult for blood coming from the heart to go into the lungs to be oxygenated, and the blood can even bypass the lungs, resulting in oxygen-poor blood being circulated to the body. Please pray that the high pressure in Jude’s pulmonary vessels will abate, that those vessels will dilate, and that his blood flow to his lungs will increase.

Rose and I have one final request: Please pray for the Lord’s wisdom as we make decisions related to where our daughter, Annabelle, will reside during our time in Charleston. We love her dearly and want to be with her as much as possible, but we also want to spend as much time with Jude as we can. Nothing about our present situation is easy, and realizing the best plans for Annabelle that provide her with stability and consistency may require patience and wisdom, not least on the part of those loving family members who have agreed to help us care for Annabelle while Jude is in the hospital and Rose is recovering from her C-section. We are extremely thankful for the sacrifices that our family has made for us and for Annabelle, and we ask for God’s mercy as we move forward and iron out the best arrangement that’s workable for everyone involved.

As always, we greatly appreciate your prayers and support during this difficult time. Even though we struggle under the weight of these trials, we know that our God is with us every step of the way, and since He is the One who suffered the ultimate trial on our behalf, we can rest assured that He knows exactly what we’re going through. Thanks be to God!

Since then we have a great high priest who has passed through the heavens, Jesus, the Son of God, let us hold fast our confession. For we do not have a high priest who is unable to sympathize with our weaknesses, but one who in every respect has been tempted as we are, yet without sin. Let us then with confidence draw near to the throne of grace, that we may receive mercy and find grace to help in time of need. -Hebrews 4:14-16


  1. Praying for Jude!!! It sounds like he is doing well! Praying for decreased pulmonary hypertension and decreased fluid in his lung! I remember how upset I got watching my baby girl Dakota on all those wires and tubes and looking uncomfortable and getting mad. I can assure you though that they do not appear to get traumatized by it. My little girl is almost 3 now and she looks at her baby pictures when she was on ECMO, etc. and that is just normal to her. She happily tells anyone who asks that that is baby Coco. She is a perfectly happy, normal, healthy girl. I think that this trying time gives them inner strength and proves just how amazing babies are, and the families that love them. Praying for a good day!
    Mom to Dakota 12-25-2008
    RCDH/ECMO survivor

  2. Brian and Rose, You guys may not remember me, but we are Katie's brother and sister in law. We have been keeping up with you guys for months now via Katie and now through this blog. I wanted you to know that Camron and myself are praying constantly for Jude and are believing for incredible things to happen....and soon!! I know the pain of having to leave a baby in the NICunit and there are no words that can help comfort the hearts of parents. So I will just pray for peace and strength and confidence in our Great Physician, Jesus, to be yours!! I know the love of our daddy is so incredible and He will take care of all your needs- from childcare for Annabelle, to money for medical expenses, to clearing out little Jude's lungs. Just know that you have many friends standing behind your family in prayer! And we won't cease praying until we hear the incredible report of Jude going home to be with his sister and mom and dad.

    Huge blessings, Camron and Andi Smith