Well, we pushed Miss Clara as hard as we could for her to catch on to eating orally all by herself and she gave it a valiant effort. But after four days of working so hard to learn how to take meds orally, practice nursing, work on bottlefeeding with several different bottles, use the supplemental nursing feeder, try different caloric supplements to my milk, and adjust to her new life without morphine, poor little Clara was just pooped. The feeding every two hours schedule yesterday really wore her out and she started to get a little lethargic. I could tell last night before we "went to bed" (which I use loosely, of course) that she just wasn't quite ready yet.
She had a bit of a rough night. Her 2AM feeding we tried to use a bottle and gave her some breast milk with extra calories and as I've stated before, she is truly a purist. She wants mama's milk only and she wants it direct from the source. She threw up that whole feeding. By her 5AM feeding she was so hungry that she latched on (with this new size nipple shield she has really improved and changed her latch to be so much more effective) like she never has before and sucked, swallowed and coordinated beautifully. It took four days, but at 5AM today, she finally really figured out how to nurse correctly. She took about 80cc from me in about 20 minutes and despite our great efforts to encourage burps and prevent spit up, I think it was just too much too fast and she promptly threw it all up too. Plus, she was down about 150 grams for the past 24 hours. The weight loss was too much and some early signs of dehydration were starting to creep up. It was time for Plan B.
Fortunately for us, one of our very most favorite attendings ever took over service today. Dr. Block came in and talked with us and helped develop a new plan for Clara. The NG tube is back in for now. She's been getting continuous feeds all day today which we have slowly increased to 25cc/hr. She had several pretty big vomits this morning, but that seems to be under control for now. She will continue to get these continuous feeds overnight and we'll stop them at 7AM tomorrow. Then, I will nurse her at 9AM, 12PM, 3PM and 6PM. At 7PM we will start the continuous feeds again at 30cc/hr for 12 hours. At 7AM those will stop and we'll repeat the cycle. We're trying this over the weekend, hoping that she will rehydrate, gain weight, and most of all tolerate the increased volume. The vomits have us concerned that reflux is rearing its ugly head, so we are very prayerful that we will be able to keep this quantity in her so that she will have the calories and nutrition that she needs to grow. On Monday, we'll re-evaluate how things have gone over the weekend and see where we should go from here.
I mentioned yesterday that we would consider a G-Tube if this didn't work. We're still open to the possibility of this, if it becomes necessary, but are very hopeful that we can avoid it. Clara has made great progress and continues to show promise. We've been encouraged and affirmed by many people that they still think that she can do this. It may take a little longer than we thought and we may have to move a bit more slowly. But our goal is still to go home without any tubes, even if that means a little longer stay in the hospital. Because of her history, she's at a higher risk for this surgery and we do not want to put her through it (reintubation, anesthesia, etc.) unless it is absolutely necessary. If the weekend goes well, we'll stick with this plan for a few more days and then slowly begin condensing those nighttime feeds and then replacing them with breastfeeding until she's off the NG tube.
This is a little bit of a setback, for sure, but we've learned some important things during the past week. Clara does not like any supplements or formula additives. She nurses best when she's hungry and rested (duh). She has improved her latch and is getting more milk than she was a couple of days ago. She can take her meds orally! She tires out if we nurse longer than about 20-30 minutes. She prefers life without a tube in her nose. Most of all, she likes breastfeeding and is getting better at it every day. We are not giving up hope. I am still (reluctantly) learning patience.
We were so excited a few days ago when we thought we might get discharged today. Clara wasn't ready though. As much as we want her at home, we want for her to be healthy and strong and ready to be there herself. Today was spent kind of rewinding, rebooting, and getting ready to continue jogging through, not sprinting, this last leg of the marathon. We could easily be here another month, either mastering these eating skills or if it does not go well and we still have to go the G-tube route it will take several weeks to recover from that surgery and be ready to go home using that system for feeding. Again, I remain hopeful and optimistic for the former. Clara has surprised us all over and over again with how smart she is, how strong she is and how resilient she is. Let's pray that she'll do it again. We are ready and willing to wait for her timing and most importantly, God's timing.
As you continue praying for us and this issue, please pray that Clara can tolerate these feeds at this rate/volume. Pray that she will rehydrate tonight and that we'll see the return of some good wet and poopy diapers that have been absent today (once again, praying for pee!). Pray that she will nurse well during the daytime 12 hours and get enough milk from me to sustain her and help her grow. Pray that she will rest well at night while she receives continuous feeds so she is ready to work hard the next day. Pray especially that she will overcome reflux and that she will not vomit her milk she needs to grow. We really really do not want to face reflux surgery. Pray for our stamina and endurance as we wait patiently for Clara to show us when she is ready to come home and that we will not push her too hard to get there too fast.
We thank you all for the way that you have been moved and touched by Penelope's life and that you have prayed as faithfully for the Spencers as you have for us. Continue to remember them as they walk the difficult path of grieving. We cannot know the pain that they are feeling, but our hearts do ache for them. In the midst of small hurdles for Clara, we are constantly reminded of how grateful we are to have her in our lives and to know that we will someday bring her home. We are constantly grateful for that blessing. We hurt so much for Samantha and DJ. I am not comfortable sharing her email address on the blog, but if you email one of us we will pass it along to you. She also sends this message: