May 31, 2011
We weaned her morphine again today; it is now down to 0.1mg and just one more wean away from being gone for good. The surgeons looked at her pressure sore wound and her incision today and said they both looked great and we could stop dressing them. We've moved her echocardiogram, originally scheduled for Thursday, to today so we can get a check on the pulmonary hypertension and check with the cardiologists about whether we can adjust her sedenafil dosing to a more home-friendly schedule. These are truly the final baby steps to get us out the door. It doesn't seem that long ago that we were asking you to pray for rapid weight loss. While on ECMO, Clara had doubled in size and we wanted that fluid gone so desperately. The nurses told us then that there would come a day when we wanted so badly to see the numbers on the scale go in the opposite direction. That day is here. Please pray for weight gain! We'll keep you posted...
May 30, 2011
So, that's exactly what we're doing. Clara got her last tube feeding at 11:00 this morning and since then we've been just breastfeeding every two to three hours. There are these great family rooms at the hospital that are typically used for parents to stay with their baby in the room the last night or two before discharge just as a trial run. We're not that close to discharge yet, but we're using the room to give breastfeeding a shot. Clara hasn't thrown up since that 11:00 tube feeding and I think is taking around two ounces for each feeding. Robert and I are delighted to be joining her for a slumber party tonight! It's the first time all three of us have spent the night together and we're pretty excited. I'm also a little anxious. This is a big test to see whether they'll let us go home without mastering bottle feeding yet. We covet your prayers tonight. Please pray especially that Clara will eat heartily and gain weight over the next couple of days to prove that this is sustainable. Pray that she will have plenty of wet and poopy diapers to demonstrate that she's hydrated and getting nutrition. Pray that Robert and I are able to catch a few winks between feedings ourselves and that our first night together as a family of three, although away from home, will be a success! This is truly our last hurdle on this journey. You have faithfully prayed us through each and every step, so we ask now for your fervent prayers one more time. Eat, Clara, eat!
I'll post some pictures of our newest home tomorrow, but it's dark and quiet in here now and since there's a sweet sleeping baby that I don't want to disturb, I'm going to leave it that way.
Join us in handing over this final step to God. He has cared for us so well and provided for us so thoroughly throughout this journey. We are trusting that He will again. Part of the Lord's prayer is "Give us this day our daily bread." We're asking now that God provide enough nourishment to Clara to sustain her and allow her to grow! I don't think He'll mind if I change the words of the Lord's Prayer tonight to say, "Give us this night our nightly breastmilk."
Matthew 4:4 - Jesus answered, “It is written: ‘Man shall not live on bread alone, but on every word that comes from the mouth of God.’ Nor shall we live on breastmilk alone, but on the grace and hope of our Lord and Savior. Amen.
May 28, 2011
We are slowly breaking free from the wires, tubes, and cords that are attached to her. All that is left now is her NG feeding tube and we'll be able to go home...
Isn't it great to see these sweet cheeks with a little less tape?
We took many more photos today, but I'm tired, and so is Clara. Here's a yawn to prove it. More to come tomorrow...
May 26, 2011
Penelope's mother just posted an update a little bit ago:
"finally got the hemofilter started ... praying to God that this is the thing that finally helps our baby girl get better. If not, I don't know much else that they can do"
That last sentiment is all too familiar to us. Please pray for Penelope to be another miraculous example of God's goodness and grace. That she too would step back from the cliff and show everyone watching what a wonderful and loving God we serve.
Thank you all for your prayers for this sweet, beautiful little girl!
If all my calculations are correct and Clara is able to keep maintaining what we've got going right now, her morphine will be off next Wednesday. Then the only drug she will be on is sedenafil for her pulmonary hypertension, which she'll go home on. The only thing left at that point is increasing her oral feeds until they're sustainable and we'll be marching out the doors of Brenner's. Thank you for continuing to faithfully pray us through these final steps.
So, why is this post called "Cheese is Yummy," you may ask. Because cheese is very very yummy. I've been dairy free for one week now. Holy cow, I love dairy (pun intended). Robert and I typically go through a gallon of milk in our house in about four days. When I look at a menu and pick the five things that sound the most delicious to me, they inevitably all have cheese and/or milk/cream/dairy something. I really really love my dairy. And I've never been convinced that the blood in Clara's stool last week was truly from a milk protein allergy. It was a diagnosis of exclusion (meaning, we don't think it was X, Y, Z, so that must leave a dairy allergy). And I'm just not sure. So, I'm starting dairy again. Slowly. The doctor said I could not drink a gallon of milk in three days (but, oh that would be delicious). We'll see if the blood returns and if not, we'll assume that there was some kind of tear or fissure that we could not see and that Clara loves cheese as much as her mama. It's totally selfish, but I'd appreciate your prayers with this little trial too. If Clara is a real Hardy, she'll show us she can handle her milk! (And I will celebrate with a big bowl of ice cream!)
On a much more serious and critical note, Penelope is not doing well. She is still battling infection and today they have added a hemofilter to her ECMO circuit to try to pull of some of her fluid. Please continue praying for her and her family. Our hearts ache for them.
We can see the light at the end of the tunnel. Just hanging on a few more weeks. We're gonna get our girl home soon.
May 25, 2011
May 24, 2011
But she came around:
Getting dried off:
Please continue to pray for her morphine wean and feeding; they are the two things still standing between us and home.
More pressingly: PLEASE continue to pray for little Penelope, the other CDH baby at Brenner who is on ECMO currently. She needs to make some good forward strides towards getting off of ECMO soon. Many of you remember this delicate dance of fluid and lung volume that Clara went through; pray now that Penelope's dance will lead her to where Clara is now!
Thank you all for your continuing prayers and support. We love you all!
May 23, 2011
I have to say, this whole experience has certainly taught me a lot about faith and God and certainly about prayer, but it's also kind of leaving me shaking my head a bit. I'm not sure I ever really had a very good understanding of intercessory prayer and while this whole experience has certainly convinced me of the power of it, it's also turned my personal theology upside down. I've always taken issue with the idea of prayer being like a magic genie. I've never really thought that it was as simple as "We ask, God gives." I mean, sure -that might happen sometimes - but a lot of time we ask and we don't get. There are plenty of people out there praying for healing right now that may not receive it. There are lots of people praying for a lot of things and not hearing the answers that they desire, hope, expect, or even deserve. I've never doubted that God was capable of performing this miracle and I am continually giving him the credit, glory and praise for doing so. I just wish I understood better "why us?" Why have we been so fortunate to have our prayers answered time after time after time? It seems like every time I write on this blog that we are standing in need of prayer with a specific issue, there are thousands of you out there who begin to pray fervently on Clara's behalf. And without fail, your prayers have been answered. God continues to shower us with His mercy and grace and is fulfilling all these requests. It's an incredible thing to be in the middle of and it has really changed the way I understand intercessory prayer. That is to say - I think I probably understand it even less than I thought I did, but I am sure grateful for the power of group of people diligently asking God and expecting His blessings. I know it's a miracle to watch Clara getting better and stronger and more alert and healthy each day. But I'm also just amazed at the miracle of prayer. I've never experienced anything like this before and it's changing my heart to see how God has heard your cries and pleas and is responding to them time after time. It is so cliche to say, but I just can't think of any other words and it's ringing truer for me now than I have ever known before: Prayer is powerful. So so powerful.
Aside from the relief from morphine withdrawal and the return of our sweet happy baby, today was fairly uneventful. She's continuing to breastfeed well, but is not getting anywhere near the full amount of her feeds that way, so we're still having to give her tube feedings, too. She got her first bottle today since we will probably have to have her eating from the bottle before we can go home. I'll continue working on breastfeeding while we introduce the bottle and after we get home too, but since we can't know for sure how much she's getting from the breast and we can from a bottle, we will need for her to learn how to bottle feed. (Also, it would be nearly impossible for me to be at the hospital for every feeding, every three hours, around the clock). She didn't quite seem to know what to think of the bottle today. It's a little unusual that she's breastfeeding so well, but couldn't take a bottle today; that's backwards from most babies. But the speech, OT and PT folks didn't seem surprised by it, saying that it's just a totally different feel and experience. We know that she can latch on, suck and swallow, so hopefully we'll get those skills transferred to the bottle with a little practice. She's getting 80ml every three hours in her tube right now, so we'll need for her to be able to drink that much orally before we can go home. We've got a long way to go....
I know I say this every night, but thank you for your prayers. I hope you know how much they mean to us. Please continue to pray for successful morphine weaning, shelter from the side effects of withdrawal, and growing success with oral feeds, both bottle and breast. Of course, as always, pray that she will be protected from infections or other secondary issues that would cause a setback and pray for the physicians and staff who are caring for her. Day by day, we continue to experience miracles and are thankful tonight especially for the miracle of answered prayers.
|Clara's first bottle
|"Hmmm.... what do I do with this?"
|Eyes of confusion!
P.S. Happy two month birthday, Clara! WOW!!
P.P.S. Thank you for the many of you who have asked about Penelope and are continuing to pray for her as well. She's having a tough time. She is still on ECMO and is having several complications that Clara did not face such as infection and bleeding. She had her second circuit change today and we are hoping and praying that will give her the boost she needs to come off the machine and begin her recovery. Thank you for continuing to pray for her and her family as they are in the thick of this difficult time.
May 22, 2011
|Friday with Sweet Mama
|Checking out her Mama K and Daddy Bob
Please pray for rest for Clara, as the morphine withdrawal has made her quite fussy. Pray that she will be able to continue weaning this narcotic with fewer side effects. Pray that she will continue to feed, transition to oral feeds, and reduce her spit up, whether it is from acid reflux or withdrawal. Pray that she will take the steps she needs to get well so that we can bring her home soon!
We are grateful for your continued prayers.
May 19, 2011
Her new room is semi-private. She shares it with two other babies, but it’s a smaller, quieter and calmer space. There’s one nurse to those three babies and I can tell already that we’re going to be very happy here. They’ve encouraged us to take over as much of her care as possible and prepare for her coming home – that’s what this intermediate stage is all about. We were already changing her diapers and taking her temperature and helping with many things at her bedside, but now we’ll be able to do even more. We will just focus on the last few things that have to happen for her to get home – weaning of her morphine and her oxygen as well as sustainable feeding. Such good progress has been made with all of those goals. I really believe we’re on the fast track home.
|Beautiful wide, alert and open eyes
|So cute in her fishies
|Watching her mobile, no doubt
|Clara smile! Common, but difficult to capture on camera
|Such focus in her eyes
|I really love baby feet
|And I love patting ruffle butts
|Ready for the beach in August with my crab outfit
|Sleeping soundly, snuggled up with blankets, lovies and my paci. Life is good.
|A little "tete-a-tete" with Bigdaddy
|This big man loves this little baby so much
|Clara and me with Martha, the lactation consultant, who has worked so patiently, lovingly and passionately with us.
|I should also mention that Dr. Yang really loves Clara. See it in her eyes?
|Goodbye, NICU Pod A!
|Hello, Intermediate Nursery Pod F!
|Clara is hot-natured like her daddy. Sometimes a girl's just gotta strip down.