I'm about to head back to the hospital. I didn't sleep much last night, but slept more than I would have in an upright chair by her bed all night. The good news is that Clara slept great. She was still sleeping at 7:15 this morning and had not woken up since she fell asleep at 10PM. They had not even given her ativan since she was sleeping so well, so that is great. Also, the labs came back negative so it does not appear to be an infection. I am prayerful that they will not start antibiotics and that they will consider resuming feeds this morning since she's had 18 hours of bowel rest. If they do resume feeds, I hope that they'll try giving her breast milk again; she really did not care for that formula.
Thanks for your continued prayers for Clara and especially for this most recent bump in the road. We continue to rest in the knowledge that she is in great hands at Brenners and in even better hands of her Creator. We have faith that this will all work out, but are eager to hear a definitive decision and solution and plan for moving ahead.
May 19, 2011
May 18, 2011
Bedside Blogging
I'm sitting by Clara's bed and she's sleeping peacefully in my lap. Since I'm not sure when I'll be leaving here tonight (they're very short staffed and I don't really like leaving her when things are this busy) I thought I'd just update you from my phone.
Clara has made great progress the past couple of days on many fronts. She breastfed yesterday for 20 minutes in the morning and another 10 in the afternoon for an estimated total of about 2oz. We have also condensed feeds to one hour (instead of continuous). Yesterday we weaned her ativan dose; today we weaned the morphine dose and went to prn or "as needed" for her ativan instead of an automatic dose every 8 hours. She breastfed again twice today. Her oxygen flow is down to 0.9 liters or 900cc. The FiO2, or percent oxygen has been consistently below 30% and she's had a couple of runs at 21%. So we've made good progress on all 3 fronts and are so proud of her and thankful for the physicians and staff and most of all our Lord.
On Monday we started to see a small amount of blood in her stool. She was not uncomfortable or unhappy so we just stopped her supplemental protein and decided to watch it. Yesterday the blood increased in frequency and today it increased in quantity. The initial thought was (is?) that she might have developed a lactose intolerance. We started a formula to see and I've stopped drinking/eating milk so that if that is it we can resume breastmilk in a little while. The blood is continuing to get worse and she threw up almost half of the formula (this baby likes mama's milk). They ordered an abdominal xray to see if there's anything else going on. They're also going to do some labs to check for any infection. In the meantime they've stopped feeds completely overnight and are going to give her fluids which unfortunately means a new IV.
We are praying that the bloody stools resolve quickly and that the doctors are able to solve this puzzle. She doesn't act sick or uncomfortable or anything. As hard as it would be for me to stop all dairy I'll be willing to do it if it will make her better. But my gut feeling on this is that it isn't lactose. I'm not sure what it is but I just really hope she'll be okay and that this is a small setback and not a big one.
They just did a heel stick to get blood for labs and Clara really hated it. Lots of tears from her and a couple from mama too. We gave her her morphine (*after* the heel stick... bad planning) so hopefully that will kick in a bit before we have to stick her again for IV access.
Robert is out of town tonight for work and I'm not leaving tonight until things are more stable around here. They're short two nurses and even though Clara is a little sick for Clara right now she is one of the healthiest and most stable babies in ICU. So that means Clara isn't getting much attention from the nursing staff (rightly so). Good thing I've learned a lot about nursing the last eight weeks. I'll just take care of her.
Thank you for praying for our baby. I'm still so thankful for how well she is doing, even after a difficult afternoon. I know that God has begun a great work in her and that He will see it to completion in His way. Indeed we have much to be grateful for.
May 17, 2011
Reflection
I wasn't going to post tonight because I don't have a ton of news and I don't want to totally burn out on writing. But I've spent the last hour or so reading the blogs of other families who are in various stages of this CDH battle right now and I am just so overwhelmed with thankfulness and gratitude for Clara and where we are right now. She has been a very very sick girl and we have stared death in the face, but it is absolutely incredible how well she is doing now, especially for where she has been. I am realizing more and more that most of these babies just don't do this well. Weaning off of the ventilator and oxygen is extremely difficult for lots of these babies. Many of them face secondary infections. For many of them, withdrawal is a huge battle. For almost all of them eating is an extremely slow, tedious, frustrating and difficult experience. Clara surprises us daily with her strength and vigor and the giant leaps that she is able to make when nobody expects them. We have moved slowly (or perhaps just intentionally, with purpose) with many things, but the fact that we have not had any major setbacks in weeks is just astounding. I want to be sure I'm not taking this for granted. I want to be sure that I am not allowing my own impatience and fatigue and trivial frustrations to eclipse the reality of how remarkable her recovery has been. Our God is so good. He has been so faithful to us. We are experiencing His grace in the deepest and most tangible way right now. We have done nothing to deserve such rich blessings in our lives and yet they are poured out on us, day after day, even when we don't always appreciate them as much as we should. I just feel so convicted of that right now and wanted to take a moment to reflect on this journey. We have learned so much, grown so much, loved so much. We have experienced the power of prayer and community in a way that many people never do. As I reflect on all of this, I just feel overwhelmed with feelings of thankfulness and gratitude - to the many people praying for Clara and loving on us, but most of all to our Creator and Sustainer and Giver of Grace. Praise be to God.
*New photos coming tomorrow, for sure. I promise.
*New photos coming tomorrow, for sure. I promise.
May 16, 2011
Miraculous Monday!
I am going to do my best to write this quickly because Robert and I are going to the minor league baseball game tonight with my parents and my niece. Clara had such a wonderful day though, that I needed to share it with all of you faithful followers and pray-ers. Have I mentioned to you lately that your prayers work? Because they do and they are. Daily. We remain so very grateful. Please keep them coming.
Clara is continuing to tolerate her weans very well. Her oxygen is now down to one liter of flow and she has been between 25%-27% for 24 hours now without requiring an increase in FiO2. Remember, room air is 21%, so we are getting very close! She has to be under a liter of flow to be moved to intermediate, so we're getting closer to that milestone too! She has tolerated that wean very well with no increase in respiratory rates or drops in her O2 sats. She is tolerating the wean of morphine well at this new rate (down by 0.1 mg every other day; currently at .67 mg) as well and seems to be doing even better on the ativan than the versed. She's awake and alert more and more now and we are really enjoying her precious smiles, her babbling voice, her tracking eyes and her sweet sweet face. We've also been condensing her tube feeds so she now gets fed for an hour and a half continuously and then has an hour and half with it completely off before the next feed.
Last week Speech Therapy came to work with her and said that while she had some pretty good mouth and tongue reflexes still that she did not do very well with the "paci dips" (that's where they put some milk on a pacifier and have her suck on the paci). So, we thought that we might still be a long way away from successful oral feeds. I've been continuing to offer her the breast, but she had not really shown great signs of progress there, either. Everyone kept saying she was still too weak, too sick, too tired and that she would have an oral aversion from all the time she spent intubated. I just didn't believe it. In my gut all along I've felt like she would be a good feeder which is part of why I think I was so disappointed and discouraged to hear them continue to say that she wasn't going to be able to do this. Yesterday when I offered her the breast she actually latched on and sucked a little bit. Since it was late on a Sunday, nobody else was really around (lactation consultant or doctors or speech therapy) to see it, but I really felt encouraged that she had made some good progress and that feeding would happen sooner than everyone expected. Today I had the lactation consultant (Martha), whom I've really grown to love and appreciate, come and watch when I offered Clara the breast. I was afraid she wouldn't do anything with an audience and that they wouldn't really believe what had happened yesterday. But today she did so much better than yesterday even! She latched on and sucked and swallowed for five to ten minutes! When I pumped afterwards, my guess is that she actually got between 10 and 20 ml of milk! She didn't get totally exhausted, she didn't fuss or cry or try to spit it out. She just did great. I was crying tears of joy; Martha was kissing me and calling out to everyone in the unit, "Come here! Come look at this!" It was so incredible.
Now, all that to say, we will still have a road ahead of us with feeds. Even though she didn't choke or aspirate at all during the feeding, she did throw up a little bit about thirty minutes later, during physical therapy. It's always hard to tell what the trigger might be for her vomits and spit ups, so it may have just been that she got a little extra milk and it was too much food. Or it may have been that she wasn't wild about the position that she was in. She only nursed for a few minutes and she didn't get a whole lot of milk, so we still have work to do and progress to make towards building up where we want her to be. But this is such a great step and it fills me with hope and promise for the future. In many ways, I think I am as excited today as I was on the day of her surgery or when we decannulated or when she was extubated. Regardless of the doctors' predictions about her ability to eat, I just feel so hopeful and optimistic that she will continue to surprise us all and defy our expectations. After all, that's what miracles are all about, right?
I am so excited and happy to say once again, loud and clear, TO GOD BE THE GLORY! It is so empowering and humbling and moving to watch how He is continuing to work in the life of our baby girl and how he is using the prayers of so many people to slowly reveal a miracle in our midst. I just can't say enough: Thanks be to God.
* I do have some sweet photos from the last two days, but I've got a baseball game to catch. If I get home before my last pump for the night, I'll upload them in a separate post.
Clara is continuing to tolerate her weans very well. Her oxygen is now down to one liter of flow and she has been between 25%-27% for 24 hours now without requiring an increase in FiO2. Remember, room air is 21%, so we are getting very close! She has to be under a liter of flow to be moved to intermediate, so we're getting closer to that milestone too! She has tolerated that wean very well with no increase in respiratory rates or drops in her O2 sats. She is tolerating the wean of morphine well at this new rate (down by 0.1 mg every other day; currently at .67 mg) as well and seems to be doing even better on the ativan than the versed. She's awake and alert more and more now and we are really enjoying her precious smiles, her babbling voice, her tracking eyes and her sweet sweet face. We've also been condensing her tube feeds so she now gets fed for an hour and a half continuously and then has an hour and half with it completely off before the next feed.
Last week Speech Therapy came to work with her and said that while she had some pretty good mouth and tongue reflexes still that she did not do very well with the "paci dips" (that's where they put some milk on a pacifier and have her suck on the paci). So, we thought that we might still be a long way away from successful oral feeds. I've been continuing to offer her the breast, but she had not really shown great signs of progress there, either. Everyone kept saying she was still too weak, too sick, too tired and that she would have an oral aversion from all the time she spent intubated. I just didn't believe it. In my gut all along I've felt like she would be a good feeder which is part of why I think I was so disappointed and discouraged to hear them continue to say that she wasn't going to be able to do this. Yesterday when I offered her the breast she actually latched on and sucked a little bit. Since it was late on a Sunday, nobody else was really around (lactation consultant or doctors or speech therapy) to see it, but I really felt encouraged that she had made some good progress and that feeding would happen sooner than everyone expected. Today I had the lactation consultant (Martha), whom I've really grown to love and appreciate, come and watch when I offered Clara the breast. I was afraid she wouldn't do anything with an audience and that they wouldn't really believe what had happened yesterday. But today she did so much better than yesterday even! She latched on and sucked and swallowed for five to ten minutes! When I pumped afterwards, my guess is that she actually got between 10 and 20 ml of milk! She didn't get totally exhausted, she didn't fuss or cry or try to spit it out. She just did great. I was crying tears of joy; Martha was kissing me and calling out to everyone in the unit, "Come here! Come look at this!" It was so incredible.
Now, all that to say, we will still have a road ahead of us with feeds. Even though she didn't choke or aspirate at all during the feeding, she did throw up a little bit about thirty minutes later, during physical therapy. It's always hard to tell what the trigger might be for her vomits and spit ups, so it may have just been that she got a little extra milk and it was too much food. Or it may have been that she wasn't wild about the position that she was in. She only nursed for a few minutes and she didn't get a whole lot of milk, so we still have work to do and progress to make towards building up where we want her to be. But this is such a great step and it fills me with hope and promise for the future. In many ways, I think I am as excited today as I was on the day of her surgery or when we decannulated or when she was extubated. Regardless of the doctors' predictions about her ability to eat, I just feel so hopeful and optimistic that she will continue to surprise us all and defy our expectations. After all, that's what miracles are all about, right?
I am so excited and happy to say once again, loud and clear, TO GOD BE THE GLORY! It is so empowering and humbling and moving to watch how He is continuing to work in the life of our baby girl and how he is using the prayers of so many people to slowly reveal a miracle in our midst. I just can't say enough: Thanks be to God.
* I do have some sweet photos from the last two days, but I've got a baseball game to catch. If I get home before my last pump for the night, I'll upload them in a separate post.
May 14, 2011
Readjusting (Again)
I have written several times on this blog about how we have had to readjust expectations throughout this process. Realized or not, we carry expectations about becoming parents and what we think our children will be like. Even when we knew that Clara would be sick and face some difficult times, we still didn't really expect to be on ECMO, didn't expect to have doctors tell us she would die, didn't expect to be in the hospital quite as long as we have been. We continue to remain so very very grateful that we are where we are now and not where we were five or six weeks ago. But I'm still having to adjust my expectations - of myself, of Clara, of the doctors, of timing in general. As you've no doubt read by now, we had a little reality check this week about Clara's homecoming. Tuesday's morphine withdrawal was more significant to the doctors I think than I even realized at the time. We have to be very very slow with this weaning process because a bad withdrawal fit could trigger a pulmonary hypertension episode which would cause a big backslide and well, we don't want that. So we've slowed the sedative/painkiller wean pretty significantly and are in general taking things very slowly. I recognize that this is good for Clara and we want what is best for her, but the slower pace has been a challenge for this very driven mama. Dr. Yang is very intentional about not doing too many things on any given day so that if there is a problem we can hopefully identify the cause of it. This makes sense and is good, but day to day I sometimes struggle with feeling like we're not making much progress. I know it's not true. We are making progress. It's just a lot slower.
I feel such a strong urge to bring her home now. I think in part because she looks so good and seems so healthy and stable in a lot of ways, I just feel like I could walk out of the hospital with her in my arms on any given day. I remember a few short weeks ago when I wanted so desperately to hold her and now I feel that same strong desire to have her in our home with us. I am also struggling with feeling a little guilty/greedy about wanting her home. I remember clearly saying six weeks ago that if we just knew that she would live I could face anything. We know now that she'll live and so I get frustrated with my own impatience about having her at home.
But I'm less anxious and sad and disappointed today than I was even on Wednesday. It's just taken me a couple of days to let go of the totally random and arbitrary "June 1" deadline I had created in my head and to try to readjust my expectations once again that we'll probably be in the hospital for at least another month. I'm tired of being there. I'm tired of spending all day in a dark beeping room. I'm tired of not having privacy. I'm tired of going to a separate room to pump every three hours. I'm tired of eating out and eating in the hospital. I'm tired of it all. But I'm also still so so thankful that we're in this wonderful place with this incredible staff and wise physicians and patient and loving people. I'm thankful that we're not as critical and that we really only have three issues left to resolve (oxygen, sedative wean, feeding). I'm thankful that I have the support of a wonderful family and a generous community of friends and strangers who are surprising us and sustaining us through every minute of this. I'm thankful that I get to spend hours with Clara in my arms and that she loves it there. I'm thankful for so much and am trying to constantly remind myself of all of that in the midst of feeling eager and impatient about the next step.
Today we further condensed Clara's feeds. Now, instead of getting a continuous 25ml/hour she gets 75ml over two hours and then has one hour off before we resume feeds again. This is a slow process too, but a very important step towards being on "bolus feeds" and eating all at once like a typical baby. She hasn't spit up as much recently, so we're thankful for that and hoping that she will continue to tolerate the condensing. We also stopped her sodium, with hopes that her levels will be better on her next labs (the sodium is likely a contributor to spit up/vomiting). Her flow is now down to 1.25 liters and she's still on around 30% oxygen. We weaned her morphine today and will continue weaning it every other day, as tolerated. We also switched her versed to ativan earlier this week. Those drugs are in the same family, but ativan is slower acting so she only gets it three times a day, as compared to the six times a day she was getting versed. We continue to work on her OT and PT and also got a Speech Therapy consult this week (We're teaching Clara to talk! Not really. Speech in infants is more mouth/eating stuff). Her incision site and pressure sore continue to heal well. So, see? When I write it all out it does seem like we're making progress!
Here are some photos from today. Winston-Salem just got a brand new Carters store. So, so dangerous. Be on the lookout for some super cute outfits coming up...
Daddy Snuggles:
Mommy Snuggles:
And just so you know, as cute as this thing is, she can still cry and be fussy:
But Sweet Mama makes it better:
Thank you for your faithful prayers as we continue on this journey. Whatever the pace, we'll get there eventually. And we're learning a lot along the way...
I feel such a strong urge to bring her home now. I think in part because she looks so good and seems so healthy and stable in a lot of ways, I just feel like I could walk out of the hospital with her in my arms on any given day. I remember a few short weeks ago when I wanted so desperately to hold her and now I feel that same strong desire to have her in our home with us. I am also struggling with feeling a little guilty/greedy about wanting her home. I remember clearly saying six weeks ago that if we just knew that she would live I could face anything. We know now that she'll live and so I get frustrated with my own impatience about having her at home.
But I'm less anxious and sad and disappointed today than I was even on Wednesday. It's just taken me a couple of days to let go of the totally random and arbitrary "June 1" deadline I had created in my head and to try to readjust my expectations once again that we'll probably be in the hospital for at least another month. I'm tired of being there. I'm tired of spending all day in a dark beeping room. I'm tired of not having privacy. I'm tired of going to a separate room to pump every three hours. I'm tired of eating out and eating in the hospital. I'm tired of it all. But I'm also still so so thankful that we're in this wonderful place with this incredible staff and wise physicians and patient and loving people. I'm thankful that we're not as critical and that we really only have three issues left to resolve (oxygen, sedative wean, feeding). I'm thankful that I have the support of a wonderful family and a generous community of friends and strangers who are surprising us and sustaining us through every minute of this. I'm thankful that I get to spend hours with Clara in my arms and that she loves it there. I'm thankful for so much and am trying to constantly remind myself of all of that in the midst of feeling eager and impatient about the next step.
Today we further condensed Clara's feeds. Now, instead of getting a continuous 25ml/hour she gets 75ml over two hours and then has one hour off before we resume feeds again. This is a slow process too, but a very important step towards being on "bolus feeds" and eating all at once like a typical baby. She hasn't spit up as much recently, so we're thankful for that and hoping that she will continue to tolerate the condensing. We also stopped her sodium, with hopes that her levels will be better on her next labs (the sodium is likely a contributor to spit up/vomiting). Her flow is now down to 1.25 liters and she's still on around 30% oxygen. We weaned her morphine today and will continue weaning it every other day, as tolerated. We also switched her versed to ativan earlier this week. Those drugs are in the same family, but ativan is slower acting so she only gets it three times a day, as compared to the six times a day she was getting versed. We continue to work on her OT and PT and also got a Speech Therapy consult this week (We're teaching Clara to talk! Not really. Speech in infants is more mouth/eating stuff). Her incision site and pressure sore continue to heal well. So, see? When I write it all out it does seem like we're making progress!
Here are some photos from today. Winston-Salem just got a brand new Carters store. So, so dangerous. Be on the lookout for some super cute outfits coming up...
Daddy Snuggles:
Mommy Snuggles:
And just so you know, as cute as this thing is, she can still cry and be fussy:
But Sweet Mama makes it better:
Thank you for your faithful prayers as we continue on this journey. Whatever the pace, we'll get there eventually. And we're learning a lot along the way...
Steady As She Goes.
Happy weekend, all! This is Robert posting from Chrissy's computer. Not an awful lot to report today. We're making small steps each day that, when you step back and look where we are from week to week, show lots of good progress. Here's where we are now: Clara's down to 1.25 Liters on her O2 volume, and has stayed at or below 30% oxygen mix for the last 24 hours, so she's tolerating weaning down her supplementary oxygen quite well so far. She's VERY slowly weaning off of her sedatives, and I would bet we've got another week or two at least until she's drug-free. Clara has officially been downgraded from "Critical Condition" to "Intermediate Red" as of today; that's more for insurance billing than anything, but we like the sound of it. Chrissy and I are starting to get pretty antsy about getting her home. We know it'll happen when it happens, but we can't wait to be able to snuggle this little girl in the comfort of our own house, without having to drive across town, without people everywhere and alarms going off all the time, and without six different tubes/wires dangling off her and getting tangled everywhere. It's great that our battles now are with feeding and weaning off of drugs instead of the battles we were having a few weeks ago to keep Clara alive, but having a child in the NICU is exhausting, even when she's on the right track. So please pray for God to hasten the day that Clara gets to come home to us.
Also, please keep little Penelope in your prayers as well. Penelope is another little girl with CDH who was born a few weeks after Clara. She had her surgery to repair her hernia on Thursday of this week. Those of you who have been following the blog for a while will probably remember that Clara's toughest and scariest times were after her surgery. Now Penelope and her parents will potentially be facing struggles that we know all too well. Pray for them as you have for us, with the knowledge that God does still perform miracles.
Here are some images from today:
May 13, 2011
Guest Post from Bigdaddy
First of all, sorry there was no blog update last night. This time it's not my fault - Blogger was down. This is the guest post that would have been last night's post. It's written by Clara's maternal grandfather "Bigdaddy." If you're lucky, I may write another one tonight. And then again, I might not. Enjoy!
Thursday, May 12, 2011
I am writing this morning from the Hampton Inn in beautiful Sapphire Valley (not to be confused with the Historic High High Hampton Inn in Cashiers (four miles away). It is hard this morning to have missed my quiet hour with Clara Mae. The routine of going to the hospital after working out and holding her for an hour has been very therapeutic for me.
I have been amazed at how incredibly strong Chrissy and Robert have been. As difficult as this road has been, they have been rocks. Especially, I am proud of Chrissy. She goes to the hospital every morning to sit in on rounds and ask questions. Sometimes, she has to hold back because the doctors are asking questions of the medical students and residents (so they can learn) and Chrissy is answering before they have a chance. She has been the most agressive, outspoken advocate for Clara Mae. (She should have gone to Law School). Some residents have told her they are going to the blog to get the medical update instead of reading the chart. Dr. Turner has told her she can pass the first year of medical school and begin with year two. Anyway, Chrissy has always had a complete understanding of the medical issues combined with a strong faith and optimistic view of how this would end. While we have all done pretty well in handling the stress of this ride, Chrissy is the one that we can count on to be cautiously positive but realistic.
Yesterday [Wednesday] was probably a pretty good day for Clara Mae. But, for us, it was a little cold water in the face reality check. When Clara Mae came off of ECMO in mid April, one doctor cassually mentioned that Clara Mae might go home in four weeks or so. Several nurses and respiratory therapists have made positive comments about when she would go home. Being a gracious and patient family, we set a goal of June 1 (we really like goals that need to be met). We thought June 1 would give the doctors and nurses 5-6 weeks instead of four to get Clara Mae ready to come home.
In rounds yesterday, Chrissy asked if Clara Mae would be home by June 1 and they laughed at her. It was sobering. Chrissy was told that Clara Mae would remain at the hospital "a long time." That is not what we wanted to hear. She was also told that Clara Mae was still very sick. (I swear she doesn't seem that sick when I am holding her).
We debate about what is our biggest hurdle to overcome and it changes daily. It seems there are three big issues to get us to Intermediate Care and then home:
1. Get Clara Mae off morphine. Chrissy was told yesterday that Clara Mae was still on a high dose. We thought we were about done because it seems we have weaning off morphine for weeks. But, at the current rate of weaning, we are ten days away; and, that assumes daily weanings which are not happening now because of the morphine withdrawal. My best guess is that we are probably 2-3 weeks away from solving this issue.
2. Clara Mae has to be weaned off of oxygen. She was at 1.5 liters and 30% yesterday. We are making progress here. She needs to get below 1 liter to go to Intermediate care. While many of these babies go home on oxygen, we would prefer not to. If they go home on oxygen it is usually at volumes of 200-250 ml.
3. Clara Mae needs to learn to eat. This has been particularly frustrating for Chrissy, who as a mother wants to feel that bond. This one will just take time and practice. One day, she'll just figure it out. But, we want very badly for that to happen. Again, some babies can go home with a stomach tube ( a "G" tube surgically placed, not the NG tube in her nose that she currently has). We obviously prefer to avoid this; but, we'll do what we must.
So, yesterday was a tough reminder that we are still running a marathon. Maybe we thought we were sprinting to the finish line. Obviously, we have some miles to go. It was a little bit of a down day. But, I know my Chrissy will bounce back today with energy and strength and the stamina it takes to get Clara Mae home in an appropriate time and to get her home healthy.
I love you Chrissy (and, you too, Robert).
Bigdaddy
Thursday, May 12, 2011
I am writing this morning from the Hampton Inn in beautiful Sapphire Valley (not to be confused with the Historic High High Hampton Inn in Cashiers (four miles away). It is hard this morning to have missed my quiet hour with Clara Mae. The routine of going to the hospital after working out and holding her for an hour has been very therapeutic for me.
I have been amazed at how incredibly strong Chrissy and Robert have been. As difficult as this road has been, they have been rocks. Especially, I am proud of Chrissy. She goes to the hospital every morning to sit in on rounds and ask questions. Sometimes, she has to hold back because the doctors are asking questions of the medical students and residents (so they can learn) and Chrissy is answering before they have a chance. She has been the most agressive, outspoken advocate for Clara Mae. (She should have gone to Law School). Some residents have told her they are going to the blog to get the medical update instead of reading the chart. Dr. Turner has told her she can pass the first year of medical school and begin with year two. Anyway, Chrissy has always had a complete understanding of the medical issues combined with a strong faith and optimistic view of how this would end. While we have all done pretty well in handling the stress of this ride, Chrissy is the one that we can count on to be cautiously positive but realistic.
Yesterday [Wednesday] was probably a pretty good day for Clara Mae. But, for us, it was a little cold water in the face reality check. When Clara Mae came off of ECMO in mid April, one doctor cassually mentioned that Clara Mae might go home in four weeks or so. Several nurses and respiratory therapists have made positive comments about when she would go home. Being a gracious and patient family, we set a goal of June 1 (we really like goals that need to be met). We thought June 1 would give the doctors and nurses 5-6 weeks instead of four to get Clara Mae ready to come home.
In rounds yesterday, Chrissy asked if Clara Mae would be home by June 1 and they laughed at her. It was sobering. Chrissy was told that Clara Mae would remain at the hospital "a long time." That is not what we wanted to hear. She was also told that Clara Mae was still very sick. (I swear she doesn't seem that sick when I am holding her).
We debate about what is our biggest hurdle to overcome and it changes daily. It seems there are three big issues to get us to Intermediate Care and then home:
1. Get Clara Mae off morphine. Chrissy was told yesterday that Clara Mae was still on a high dose. We thought we were about done because it seems we have weaning off morphine for weeks. But, at the current rate of weaning, we are ten days away; and, that assumes daily weanings which are not happening now because of the morphine withdrawal. My best guess is that we are probably 2-3 weeks away from solving this issue.
2. Clara Mae has to be weaned off of oxygen. She was at 1.5 liters and 30% yesterday. We are making progress here. She needs to get below 1 liter to go to Intermediate care. While many of these babies go home on oxygen, we would prefer not to. If they go home on oxygen it is usually at volumes of 200-250 ml.
3. Clara Mae needs to learn to eat. This has been particularly frustrating for Chrissy, who as a mother wants to feel that bond. This one will just take time and practice. One day, she'll just figure it out. But, we want very badly for that to happen. Again, some babies can go home with a stomach tube ( a "G" tube surgically placed, not the NG tube in her nose that she currently has). We obviously prefer to avoid this; but, we'll do what we must.
So, yesterday was a tough reminder that we are still running a marathon. Maybe we thought we were sprinting to the finish line. Obviously, we have some miles to go. It was a little bit of a down day. But, I know my Chrissy will bounce back today with energy and strength and the stamina it takes to get Clara Mae home in an appropriate time and to get her home healthy.
I love you Chrissy (and, you too, Robert).
Bigdaddy
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