The last 24 hours have been much better than the previous 24. It really is true what everyone said about the roller coaster that this CDH journey is. We’ve had such highs and lows already and yesterday I don’t think we were really prepared for how intense that would feel. Every piece of bad news, no matter how small, felt totally devastating. And with every piece of good news we soared probably a little too high. What we are trying to do now is re-focus enough to accept both the good and the bad with a bit more perspective. We’re trying to recognize that we are going to have good hours and bad hours, good days and bad days, and that we cannot let the latest piece of medical news completely dictate our levels of hope or despair. This is now a marathon. We must pace ourselves.
Before I begin describing the past day and updating where we are medically, let me say to the thousands of you out there reading how appreciative we are of your love and your words of concern and affirmation. We get emails and Facebook/blog notifications on our phones and are checking them by the minute because we draw so much strength from your words. I have been especially touched by the many CDH families out there who have somehow found out and reached out to us during these first few days. I knew that this was a special community, but I cannot say enough how much it has meant to me to hear words of sustenance from those of you who have truly walked down this path before. Parents of both survivors and angels, it has been a powerful experience for me to read your heartfelt words. And to all the rest of you too – I cannot tell you how blessed I feel to be a part of your lives and have you share in this experience with us. There have been people I haven’t spoken to in many years who have surfaced to share love and concern and dear close friends who have stepped up to the plate with constant reminders of love and of course prayers. There are countless strangers who have heard about us from a friend of a friend of a friend and have been bold enough to tell us that our lives are important to them and our experiences have touched their hearts enough to compel them to pray. Your posts to Facebook and Twitter and email forwards and prayer lists chains have raised the prayers for Clara exponentially and we are so deeply grateful. Keep spreading the word because each and every prayer matters. Do not mistake our reticence for ungratefulness. I read and savor your words, so please keep them coming. I simply don’t have time to respond to each message individually.
So, last night the doctors called about 11:30 to say that they felt we needed to put Clara on ECMO (Extracorporeal Membrane Oxygenation). ECMO is a heart and lung bypass machine that allows the heart and lungs the opportunity to rest and get better. It is for patients whose hearts or lungs are failing despite all other treatments (other ventilation, nitric oxide, etc.). It is a last resort treatment and because of that almost all the babies who do not survive CDH have spent time on ECMO. That meant that we associated ECMO with not living and were scared of it and of course wanted to avoid it. Today, we’ve learned to change the way we think about this machine. It is scary, but it is also beautiful. It is keeping Clara alive right now. It is giving her hope for a future. It is allowing her to rest and giving her the opportunity to heal and recover and store up for the fights she still has ahead of her. This machine could save her life. We are thankful for ECMO.
Her transition to ECMO went well. At Brenner’s, the ECMO machines are in the PICU (Pediatric Intensive Care Unit) instead of the NICU, so she has been moved down the hall to a different department and is now under the care of a new staff. The neonatologists do not care for the babies in the PICU, so she is now directly under the care of the pediatric surgeon team (Dr. Turner, Dr. Petty, and Dr. Pranikoff) and of course the many fellows, residents, interns and others who are a part of a teaching hospital. ECMO must be attended 24 hours a day by a respiratory therapist and there is also a nurse assigned to Clara who gives her one-on-one attention most of the day and night. Like everyone we’ve met at Brenner’s, we were extremely impressed with all of this staff today. Clara is receiving excellent care and so are her parents.
Clara seemed so much more peaceful today. She’s on a traditional ventilator now instead of the jet ventilator that she was on yesterday, so her chest is rising and falling much more slowly and subtly. She is no longer fighting like she was yesterday and just looked much better overall. This is a much higher level of support, of course, but she has responded very well to it and all of her numbers looked good today. One of our primary goals is just to give her time to rest and recover and build up strength so we want to stack more and more good hours on good hours and then good days on good days. Today was very stable and so we consider it a succcess. Some of our other goals are to reduce her sedative over time so she can move, open her eyes and respond a bit more, and continue to reduce her pulmonary hypertension that I wrote about yesterday. We want her pulmonary pressure as low as possible – normal is about ¼ of systemic pressure, but we will probably not see it get quite that low, so we want it as low as possible. We would also like to see her wean off of the dopamine that she is currently on for her systemic blood pressure. Please be in prayer for these specific things when you think of Clara and intercede on her behalf.
There are several significant risks to being on ECMO too, and there are lots of potential complications. Today, Dr. Petty described ECMO as “a race against the complications.” While it is amazing technology, there are many things that go wrong for babies who are on it. Some of the most common of these include: brain bleeding, liver dysfunction, renal failure (usually temporary), other organ failure, clotting issues, swelling, lack of perfusion to extremities, and secondary sickness. There is not a lot that can be done medically to anticipate or prevent any of these complications, so we will remain prayerful that she will be protected from them. Please join us in asking God to keep her safe from these perils.
One of the questions we keep asking over and over and over again (and getting different answers for each and every time) is when will surgery be? Today, we learned that not only do we not know the answer to this question, we probably will not know the answer to this question for awhile. Different surgeons have different ideas about when the best time to do surgery is. There is no clear black and white answer about what has to happen in order for us to be ready for surgery. It is a judgment call made increasingly complex by many different factors. We probably will know a day or two before surgery (as in, it is not likely to be an emergency) is scheduled and as of right now we do not know if that will be next week or three weeks from now. We will be patient and again trust in the knowledge and skill of these wonderful physicians.
Whew. That was a lot of stuff, huh? Many of you are also asking how Robert and I are doing. We are much better today than yesterday. Like I said, we are trying to slow our pace and recognize that we are going to be in this for the long haul so we need to remember to take care of ourselves as well. I am recovering well from the C-section, although am expectantly sore and get tired. I will be discharged from the hospital tomorrow and will have more freedom to spend more time with Clara. I am pumping successfully and freezing milk for when Clara is able to use it. Pumping every two to three hours keeps me busy, but gives me a focus and makes me feel like I am doing something tangible for my baby. The rooms in the PICU are private and large so we have much more space to be with Clara than we did in the NICU. We were able to stand by her bed today for a long time and talk to her and touch her. The respiratory therapist said that she responded very favorably to my voice and my touch (as well as Aunt Jennifer’s!) and that her blood gasses were the best they had been all day while we were with her. This is a great encouragement and motivation that time spent by her bedside is valuable and helpful for her as well as for us.
That’s all for today. Please continue to read (I promise I won’t always make them so long!) and pass along and share and mostly pray. Last night when we were waiting for a decision about ECMO and many of you still awake and on Facebook were assuring us of your prayers, we were given a real peace despite a difficult time. As Robert said, thank you is not enough, but it is all we have. Thank you.
