Yesterday we had some dear friends come up to visit and they brought Caleb with them. It was such a blessing to see him after being away for 8 days (the longest we've ever been apart is one night)! We missed our little chatter box.
|Sortores visiting (Sadie and family)|
We have had a huge outpouring of support from many, many people. We currently have 2 people who might have friends in the area near the hospital that we could stay with! This would be a HUGE HUGE blessing and such a relief. Our plan (for now) is to try to go home and give me some days to heal and recover. During that time, Steve will try to commute up as much as he can for visits with Evelyn. Hopefully after a few days to a week, I will be able to be more up and around and able to better care for Caleb and myself. At that time, we may try to come stay up closer to the hospital for as long as we are able (and Steve will still need to commute as he can). At this time it would be too hard for me to stay by myself and get to the hospital via public transportation so I think we need a few days to heal and rest first. We have also had some hugely generous offers to pay for a few nights at a hotel if we need it (which would also be a huge blessing as hotels in Seoul are pretty expensive...apparently hotels near the hospital give a 40% discount if your child is in the hospital but even discounted it can be around $100/night). So that is our plan for now, subject to change always and to how she is doing.
And now for HER update:
- I was able to get up at 5 this morning and go visit her for half hour, each visit feels like a blessing and a relief that she is still "ok." Here is what she looks like this morning:
- I was able to talk to the on-call neonatal specialist this morning (Evelyn Grace's normal doctor is Dr. Kim but this morning he wasn't there so the on call doctor came over and introduced herself). One thing I have really appreciated about this NICU is every visit time one of the doctors or several of the nurses come over and spend a good 10 minutes talking to us and sharing updates and answering any questions we may have (although we really don't even know what to ask!).
- Evelyn gave a lot of urine output last night, which they take as a good sign and are really happy about. Go Baby Girl!
- They had hoped that once they drained all the fluid from her lungs, it would end (that would be best possible case scenario) but the fluid has started returning and continues to drain more. The good news in this is that the first few days her fluid output was about 300cc per day and yesterday it was down to 150cc, which means it is decreasing in amount. The doctor said many Hydrops babies need medication to try to stop the draining but since she is reducing on her own (and it isn't increasing which is huge too), they are going to try to let her body continue to reduce and see if it will self heal/correct without needing medication. She seemed hopeful since it had already reduced. This would be really good and we hope to continue to see reduction in fluid levels every day.
- For now she is estimating minimum stay to be 3-4 weeks for Evelyn (that would be best case).
- Her weight today is 3300grams, about 7.2 pounds, which is down quite a bit from her birth weight of 9.02 pounds! This is a great sign of fluid reduction and swelling decrease.
- She continues to be sedated and on high pain medications. I hate seeing her need to be sedated but it is really imortant for her care right now. It is so sad that she needs high pain meds but I'm so glad she isn't feeling all the pain she is in. She does occcasionally open her eyes though for brief periods before they roll back in her head and she also startles or shows reflexes (like curling her toes or fingers or grimacing) sometimes too. She tries to cry sometimes and scrunches up her whole face but no sounds come out, I'm assuming because of all the tubing in her throat? I have also caught her sucking on her tubes some...maybe she'll end up being a good breastfeeder after all of this? She did like to suck her thumb on ultrasound pictures!
- Right now they are not feeding her "real food" but she has IV nutrition. They need to wait for more of a fluid reduction before they try milk but the doctor sounded hopeful about starting in about a week. They are very pro-breastfeeding in this NICU and every time I come they encourage me to pump and bring milk. Now I just need my milk to come in! Once they try some milk with her, they can further test to see possible diagnosis/treatment depending on how her body responds to the feeding. This will be another milestone to look for.
- They did a sonogram of her brain last night and it looked good. They said they can not tell if everything will function correctly, if anything was damaged or if she will have any issues that way but they can tell from it that her entire brain is there and formed (nothing missing structurally) and that there is no hemmoraging on the brain. Another positive report.
- I asked her about Evelyn's chances of leading a "normal" life at some point and she said that IF a hydrops baby survives, they usually go on to living a fairly "normal" life. The biggest thing is getting her out of NICU and functioning on her own. Time will tell and she said the longer she is in NICU, the less chances she has of leaving (but we're only on Day 4 so we've got time!).
- We have had several people write to let us know "a friend of a friend" or "someone from Church" had a baby with Hydrops and we have heard several really positive and happy endings, with the babies leaving and going on to live great lives. These stories have been so encouraging and uplifting to dwell on. We know it rests in the Lord's hands and it is great to hear of His faithfulness in healing other babies with similar conditions. I know His hand is on her, He is holding her, He is sustaining her and He already knows the number of her days. It's in His hands and she is in His hands, which is the safest, best possible hands to be in!
- If you are interested, here are a few blogs of similar conditions....It helps us to read because we are still trying to figure out what we are dealing with and make sense of some of the conversations we have been having with the NICU doctors (language is a big barrier for us, some times they just write a few words on a post it note and we go "research" - aka Google it). Click Here and Here and Here. Of course from what we are told each Hydrops case is different and can vary quite a bit but maybe some of the ways these blogs explain it will help clarify it for you better than I can. They are hopeful at the very least.
- They wrote down the words "Chylothorax" "thracic duct leak" and "lymphatic" - not a for sure diagnosis but one of their suspicions at this time....still unconfirmed. We haven't been able to find a lot on what exactly this means but are working on it...If you know more than we do, feel free to share!
- The neonatal specialist this morning told me that Hydrops is a condition that neonatal specialists hate coming accross because it can be very frustrating - often they do many tests and nothing is ever confirmed or diagnosed. Some times the body heals itself and baby is okay but they never truly knew what the cause was. Sometimes they are able to find a cause. Sometimes they run every test imaginable and are still inconclusive. It sounds like a very unknown condition and they are doing their best. From everything I read, it sounds like the care she is receiving is the same care she would receive back in the States.
That's all for now! I hope it helps by way of update and information. It is all we really know at this point, as we continue to wait and pray.
Prayers for figuring out how to maximize time seeing her and also recover would be greatly appreciated as well as continued prayers that her doctors would be wise in their treatment plans and that the Lord would sustain her and us during this time.
Thank you again for our prayers and outpouring of support to us during this time. It really means so much more than you will ever know.