They changed Chloe's 1cc feedings to every 4 hours this afternoon. At 6pm they found some milk remaining in her stomach but at 10pm there was only mucus and no remaining milk. It's still too early to know if there's a blockage in her intestines.
This waiting is making me crazy! On the one hand I want them to take it easy on her and not push her little body to hard but on the other hand I'm super anxious to know the outcome. Hey, did you know that you don't have to be on your knees with your hands clasped on your bed to pray? How is it that I'm 34 years old and just learned that I can pray anywhere any time? I can pray while doing dishes, while driving the car, while in the shower, you name it! Pretty cool...
Wednesday, September 30, 2009
Tuesday, September 29, 2009
Day 37 - Working on it
Chloe is receiving 1cc of milk every six hours and before giving her each feeding they are checking her belly to pull out any milk remaining from the last feeding. Fortunately, there hasn't been any milk left in her stomach so far. This is good but we're not yet at a point to congratulate ourselves and celebrate. The doctor explained to me that this tiny amount of milk is not going to give Chloe calories or nutrition. Its purpose is to remind her stomach how to work and get it started again without overdoing it. They should increase frequency tomorrow to every three hours. Until feedings are increased we don't know if the milk will make it all the way through her intestines. We need to watch several more feedings and wait. Please keep praying hard! So far so good...
In addition, they are trying to push her lungs and get her off the oscillator (just in case she needs to be transported). Please pray that her lungs can continue to handle the new oscillator settings.
Thank you friends!
In addition, they are trying to push her lungs and get her off the oscillator (just in case she needs to be transported). Please pray that her lungs can continue to handle the new oscillator settings.
Thank you friends!
Monday, September 28, 2009
Day 36 - Trying some milk
Dave spoke with both the surgeon from Children's and the doctor today. The doctor still wanted to send Chloe over to Children's to do this "reverse ink test." Instead of sending the ink into her stomach and watching it digest, they would send it up her rear (using pressure) and see how it travels her lower intestines in reverse. If the test was unsucessful and they didn't find a blockage then they would probably try a milk feeding to see what happened. We felt like the milk feeding would be less invasive and without risk so we would rather try that first. The doctor said he'd be comfortable with that course of action and put in the order.
Chloe got 1cc of milk into her belly at 8pm tonight. Please pray with me that she digests the milk and is passes through her intestines unobstructed. This is so important!
The fact that she's gone 5 weeks without food is starting to get the doctors nervous and we're starting to feel the pressure for her digestive system to start working. If this feeding doesn't work then they'll start to get invasive again. I'll be so relieved if that's not necessary. I'm imagining God's hand smoothing her intestinal passageway open and the food digesting out of her stomach and making it's long journey through her system. Please help this happen. I know she can do it!
They'll check at 2am to see how much milk is left in her stomach.
Chloe got 1cc of milk into her belly at 8pm tonight. Please pray with me that she digests the milk and is passes through her intestines unobstructed. This is so important!
The fact that she's gone 5 weeks without food is starting to get the doctors nervous and we're starting to feel the pressure for her digestive system to start working. If this feeding doesn't work then they'll start to get invasive again. I'll be so relieved if that's not necessary. I'm imagining God's hand smoothing her intestinal passageway open and the food digesting out of her stomach and making it's long journey through her system. Please help this happen. I know she can do it!
They'll check at 2am to see how much milk is left in her stomach.
Sunday, September 27, 2009
Day 35 - 5 weeks old - Into the 30's...
Today was Chloe's 5 week birthday. Yet another week with our beautiful little blessing. We spent lots of quality time together. Me humming. Her listening. I can't be more thankful for her. Such an amazing little angel. Dave got to hold her for the first time today during her isolette change. He looked so comfortable holding her. Not a bead of sweat formed on his face - not sure how he managed that. I'm a sweaty mess every time I get to hold her! In addition to her birthday Chloe's making another milestone today. She's completing what would have been 29weeks 6days gestation. She starts week 30 tomorrow!
Overall it was a good week. She's remained fairly stable and we've enjoyed relative calmness.
There is the issue of her belly, though. The doctor called Dave today and said he wanted to transport Chloe to Dayton's Children's hospital right away and begin tests to determine why she can't pass gas through her bowel. This raised a bunch of red flags for us. Transporting Chloe is pretty risky in itself considering her condition. Not to mention the risks that come with surgery on such a small baby. Then there's the fact that we weren't comfortable with the process that brought them to this decision. She's stable now and we didn't understand the sudden urgency. It seemed as though they wanted to transport her simply to fit the surgeon's schedule and save him a trip to Miami Valley Hospital! Dave quickly became Chloe's vehement and vocal advocate. Fortunately, Dave has no problem standing up for his daughter (in a forceful way that I don't think I could have managed) and Chloe was not transported.
Dave met with the surgeon ,who made the trip to visit Chloe and, after an assessment, decided he wanted to gather more information before moving her or performing any tests or surgery. The test and surgery, by the way, sound pretty horrible to me and I really really don't want them to happen. I'm trying so hard to be trusting and faithful. I know that everything will be all right in the end and I really want to avoid self pity. So many people and their babies have dealt with so much more than this. It's really challenging, though, to have your baby go through so much. Faith. Faith. Faith. Right?
If Chloe's intestines/bowels can fix themselves tonight then she won't have to go through these tests and surgery they're talking about. How about another miracle, God? What do you say?
Overall it was a good week. She's remained fairly stable and we've enjoyed relative calmness.
There is the issue of her belly, though. The doctor called Dave today and said he wanted to transport Chloe to Dayton's Children's hospital right away and begin tests to determine why she can't pass gas through her bowel. This raised a bunch of red flags for us. Transporting Chloe is pretty risky in itself considering her condition. Not to mention the risks that come with surgery on such a small baby. Then there's the fact that we weren't comfortable with the process that brought them to this decision. She's stable now and we didn't understand the sudden urgency. It seemed as though they wanted to transport her simply to fit the surgeon's schedule and save him a trip to Miami Valley Hospital! Dave quickly became Chloe's vehement and vocal advocate. Fortunately, Dave has no problem standing up for his daughter (in a forceful way that I don't think I could have managed) and Chloe was not transported.
Dave met with the surgeon ,who made the trip to visit Chloe and, after an assessment, decided he wanted to gather more information before moving her or performing any tests or surgery. The test and surgery, by the way, sound pretty horrible to me and I really really don't want them to happen. I'm trying so hard to be trusting and faithful. I know that everything will be all right in the end and I really want to avoid self pity. So many people and their babies have dealt with so much more than this. It's really challenging, though, to have your baby go through so much. Faith. Faith. Faith. Right?
If Chloe's intestines/bowels can fix themselves tonight then she won't have to go through these tests and surgery they're talking about. How about another miracle, God? What do you say?
Saturday, September 26, 2009
Day 34 - Let's Pass Some Gas
Well, the removal of the "repogal" tube wasn't as much of a success as we'd hoped. Chloe's belly did fill up with gas this morning. We're not quite sure why she can't seem to pass it. The doctor guesses that it could just be immaturity or it could be that there is scar tissue obstructing the passage. They put off the attempted feeding and inserted a new tube into her belly to relieve the gas pressure. This one was inserted into her nose.
Please pray with me that her body will continue to heal itself. I'm feeling alternately confident/hopeful/desperate today.
Please pray with me that her body will continue to heal itself. I'm feeling alternately confident/hopeful/desperate today.
Friday, September 25, 2009
Day 33 - No More Tubes
Chloe seems to be on track to bowel/intestinal improvement. The doctor showed me her x-rays today and she looks much better. He turned the suction off her "refogal" tube but left it in for today to see how she does without suction. The "refogal" tube went down her throat and all the way into her belly and was suctioning out small amounts of fluid and air. They took it out Tuesday because nothing was coming out but then her belly filled up with air and became uncomfortably distended so they put it back in. Chloe has been producing extremely large amounts of saliva the past couple of days, though, and every time I look at her she has a huge foam beard of spit bubbles. It's cute and all but doesn't bode well for the tape holding her tube in place. She managed to pull her refogal tube out twice today so they finally decided to leave it out (rather than put her through reinsertion.) As of 10pm tonight her belly looked ok.
The two drainage tubes placed during her surgery have also managed to come out on their own, leaving a gaping hole in her side. The surgeon decided to leave it alone and try to let it close up/heal on its own. In the meantime they're keeping sterile gauze over it and carefully changing her diaper (the hole is pretty close to her diaper area) to try and keep out any bacteria.
Prayers for tonight:
-Chloe's bowel/intestines continue to improve so that they are strong enough to process feedings tomorrow.
-The nurses are vigilant in their cleansing and keep germs and bacteria away from her wound site avoiding infection.
-Comfort for Chloe as her body heals and grows.
-The rest of Chloe's body, like her lungs, continue to develop even as we're focusing on her digestive problems.
(Note: I use parentheses for medical words that I'm spelling phonetically. I have no idea how they're actually spelled and have more important things to do [like get to sleep] than research.)
On other fronts:
Solana's really enjoying Pre-K at our church. We are blessed to have found such a wonderful and nurturing place for her during this ridiculous amount of transition we're putting her through. I often look at her and think about how blessed I really am to have her.
I'm trying to figure out how to be a grown-up and homemaker again. I haven't managed the household since June and am remembering how much work it actually is when Dave, my Mom, or my sister aren't here cleaning and getting Solana ready every day. I've decided not to overdue it, though, and have committed to taking care of Solana and the dog, visiting Chloe, laundry, clean kitchen/bathroom, and unpacking one box per day. Other household chores are on an as-needed basis.
Dave seems to be getting over his cold and actually visited Chloe today after work. Then he picked up a small U-Haul and spent the rest of the evening at the old house loading up the rest of our stuff. I think all we have left is to finish cleaning and we'll finally be done with that house!
The two drainage tubes placed during her surgery have also managed to come out on their own, leaving a gaping hole in her side. The surgeon decided to leave it alone and try to let it close up/heal on its own. In the meantime they're keeping sterile gauze over it and carefully changing her diaper (the hole is pretty close to her diaper area) to try and keep out any bacteria.
Prayers for tonight:
-Chloe's bowel/intestines continue to improve so that they are strong enough to process feedings tomorrow.
-The nurses are vigilant in their cleansing and keep germs and bacteria away from her wound site avoiding infection.
-Comfort for Chloe as her body heals and grows.
-The rest of Chloe's body, like her lungs, continue to develop even as we're focusing on her digestive problems.
(Note: I use parentheses for medical words that I'm spelling phonetically. I have no idea how they're actually spelled and have more important things to do [like get to sleep] than research.)
On other fronts:
Solana's really enjoying Pre-K at our church. We are blessed to have found such a wonderful and nurturing place for her during this ridiculous amount of transition we're putting her through. I often look at her and think about how blessed I really am to have her.
I'm trying to figure out how to be a grown-up and homemaker again. I haven't managed the household since June and am remembering how much work it actually is when Dave, my Mom, or my sister aren't here cleaning and getting Solana ready every day. I've decided not to overdue it, though, and have committed to taking care of Solana and the dog, visiting Chloe, laundry, clean kitchen/bathroom, and unpacking one box per day. Other household chores are on an as-needed basis.
Dave seems to be getting over his cold and actually visited Chloe today after work. Then he picked up a small U-Haul and spent the rest of the evening at the old house loading up the rest of our stuff. I think all we have left is to finish cleaning and we'll finally be done with that house!
Thursday, September 24, 2009
Day 32 -
I got to spend about three hours with Chloe today and she's actually looking really good. We've been noticing for days that she actually looks bigger. She's just over two pounds now and it's pretty amazing that we can actually see nine ounces on her!
This morning the doctor told us that Chloe's x-ray looked better than it did last night. Her bowel is less dialated (this is good) and we're hoping this means it's healing itself. They'll check again tomorrow and if it looks better again they'll try a feeding. Yesterday was pretty nerve wracking. What a relief to hear this news. I feel like we've been given yet another chance. I'm sooo thankful!!
This morning the doctor told us that Chloe's x-ray looked better than it did last night. Her bowel is less dialated (this is good) and we're hoping this means it's healing itself. They'll check again tomorrow and if it looks better again they'll try a feeding. Yesterday was pretty nerve wracking. What a relief to hear this news. I feel like we've been given yet another chance. I'm sooo thankful!!
Wednesday, September 23, 2009
Day 31 - Another Roadblock
Did you ever watch the Flintstones? As a child, I remember watching the episode where Fred is in the hospital waiting room anxiously awaiting the arrival of Pebbles. He paces back and forth so many times that he begins to wear a path in the floor of the room. Eventually the path is so deeply worn that you only see the top of his head as he paces inside the deep hole he's worn. That's sort of how we feel now.
The doctors still don't know why Chloe's digestive system isn't processing the liquid dye they put in her stomach. They put 4cc's in there and after no apparent movement pulled 2cc's back out. They're making some guesses as to why this might be happening but don't want to commit to anything or create a plan of action until after the pediatric surgeon takes a look at the x-rays. One of the nurses told me that they saw some of the dye in her lower intestines. Of course, my first reaction is to think that's great and that some of it did get processed afterall, but the doctor pointed out that isn't necessarily the case. That was the third x-ray of the night and they never saw it moving down the other parts of the digestive system so it's possible that it came out through a rupture or fistula.
We still haven't heard from the surgeon. In the meantime I continue to wear a path in the floor as I hope for the best and wait for answers.
The doctors still don't know why Chloe's digestive system isn't processing the liquid dye they put in her stomach. They put 4cc's in there and after no apparent movement pulled 2cc's back out. They're making some guesses as to why this might be happening but don't want to commit to anything or create a plan of action until after the pediatric surgeon takes a look at the x-rays. One of the nurses told me that they saw some of the dye in her lower intestines. Of course, my first reaction is to think that's great and that some of it did get processed afterall, but the doctor pointed out that isn't necessarily the case. That was the third x-ray of the night and they never saw it moving down the other parts of the digestive system so it's possible that it came out through a rupture or fistula.
We still haven't heard from the surgeon. In the meantime I continue to wear a path in the floor as I hope for the best and wait for answers.
Tuesday, September 22, 2009
Day 30 - Not so hot
I'm trying to keep a bit of distance from Chloe. Dave is feeling sick and I'm paranoid of bringing something into her room. We stopped by for a visit today before taking Leticia to the airport but we didn't hang around or touch her. We also moved into our new house this weekend so my recent visits have been really short. I feel like I'm having Chloe withdrawal and hope she's not missing me.
They actually did the ink test tonight by putting some kind of tinted liquid into her belly. The plan was to track it's progress through her digestive system using x-rays. The liquid never left her belly, though. This is confusing to us since she's been pooping so much lately. The doctor seems to think that this is a morphine-related side effect and wants to try again after she's been off morphine for a while. We're worried about her lack of pain medication, though, because she seems to be having trouble keeping her oxygen saturation up lately. She's not tolerating care (being handled) well at all and this could be a sign that she's experiencing pain or discomfort. She's still on the oscillator (the respirator that makes her belly vibrate), has tubes down her throat, and has drains sticking out of her side. Seems pretty darn uncomfortable to me! I hate to think she's in pain. I just pray that God can lay his hands over her like a warm blanket and comfort her while I'm not there to hum her our special song.
They actually did the ink test tonight by putting some kind of tinted liquid into her belly. The plan was to track it's progress through her digestive system using x-rays. The liquid never left her belly, though. This is confusing to us since she's been pooping so much lately. The doctor seems to think that this is a morphine-related side effect and wants to try again after she's been off morphine for a while. We're worried about her lack of pain medication, though, because she seems to be having trouble keeping her oxygen saturation up lately. She's not tolerating care (being handled) well at all and this could be a sign that she's experiencing pain or discomfort. She's still on the oscillator (the respirator that makes her belly vibrate), has tubes down her throat, and has drains sticking out of her side. Seems pretty darn uncomfortable to me! I hate to think she's in pain. I just pray that God can lay his hands over her like a warm blanket and comfort her while I'm not there to hum her our special song.
Monday, September 21, 2009
Day 29 - Play-Doh Factory Poop
Never did I forsee the day that the description "Play-Doh factory poop, I wiped and it just kept coming" would elicit such excitement in me! The appearance of poop in Chloe's diaper is really something to cheer about. In four weeks, I haven't heard about any BM's and was questioning this quite a bit right before they diagnosed her intestinal tear. BM's mean her digestive system is functioning and are a great sign. I'm so excited to hear about it!
We didn't get the so-called "ink test" (I'm not sure what it's exactly called) today to confirm that Chloe's intestine is healed. The doctor wanted her to be completely off of dopamine and morphine before doing the test and she was still getting a very low level dose of morphine today. They've now discontinued both and, I'm excited to report, she seems to be handling her new drug-free existence quite well! Thank you God!
I hope that you have found this entry to be more literate than yesterday's. I was really tired when I composed it and it shows! :-)
Thank you, as always, for your concern/prayer/love/general goodness. You all mean so much to us and are a true blessing. I read the cards, emails, and messages every day and thank God for so all the wonderful people looking out for Chloe every day. God bless you and good night.
We didn't get the so-called "ink test" (I'm not sure what it's exactly called) today to confirm that Chloe's intestine is healed. The doctor wanted her to be completely off of dopamine and morphine before doing the test and she was still getting a very low level dose of morphine today. They've now discontinued both and, I'm excited to report, she seems to be handling her new drug-free existence quite well! Thank you God!
I hope that you have found this entry to be more literate than yesterday's. I was really tired when I composed it and it shows! :-)
Thank you, as always, for your concern/prayer/love/general goodness. You all mean so much to us and are a true blessing. I read the cards, emails, and messages every day and thank God for so all the wonderful people looking out for Chloe every day. God bless you and good night.
Sunday, September 20, 2009
Day 28 - New Home
We moved ourselves into our new home this weekend. I know. Seems like bad timing. But this was all lined up before Chloe and Leila arrived. We were actually supposed to move last weekend. We had about ten friends lined up to help pack and move but cancelled the move when Chloe got sick. It seemed like it would be much more difficult - all our friends were busy this weekend. But my sister flew in from Houston a few days ago and has been like an angel. She packed up our whole house in two days and has been busy unpacking and organizing, as well. I can hardly believe how smoothly it all went. Between her and my mom we have been so spoiled lately! I'm so thankful for them!
Even with the move we got to visit Chloe both days. Dave and I made it to the hospital just before midnight Saturday night and Leticia and I made it there today in time for the isolette change. Chloe's still doing well. She handled the isolette change so well, in fact, that I got to hold her for ten minutes. It was probably the fastest ten minutes of my life but I'll take a fast ten minutes with her doing so well any time!
Chloe turned four weeks today! I can't believe we've had her that long! On more than one occasion I've worried about losing her. To think that she was born four weeks ago and is doing so well is nothing less than a miracle. Just to look at her is to understand why micro-preemies are considered miracles. I can't be more thankful for every week, day, moment that we have with her.
They're still working on weaning her dopamine and morphine down further and her blood pressure seems to be maintaining. She's laying on her belly tonight and seems to really like that. They currently have her O2 settings down to 40% and that's better than it's been in days. I think they'll be doing the contrast study tomorrow. This is the test that should confirm her intestines are all healed up. I've been praying (well, actually thanking and begging) constantly every day and waiting anxiously for tomorrow's test results. Every day is important but this particular sickness is the one that most recently made us think we'd lose her. I'm ever so anxious to hear that it's healed!
Even with the move we got to visit Chloe both days. Dave and I made it to the hospital just before midnight Saturday night and Leticia and I made it there today in time for the isolette change. Chloe's still doing well. She handled the isolette change so well, in fact, that I got to hold her for ten minutes. It was probably the fastest ten minutes of my life but I'll take a fast ten minutes with her doing so well any time!
Chloe turned four weeks today! I can't believe we've had her that long! On more than one occasion I've worried about losing her. To think that she was born four weeks ago and is doing so well is nothing less than a miracle. Just to look at her is to understand why micro-preemies are considered miracles. I can't be more thankful for every week, day, moment that we have with her.
They're still working on weaning her dopamine and morphine down further and her blood pressure seems to be maintaining. She's laying on her belly tonight and seems to really like that. They currently have her O2 settings down to 40% and that's better than it's been in days. I think they'll be doing the contrast study tomorrow. This is the test that should confirm her intestines are all healed up. I've been praying (well, actually thanking and begging) constantly every day and waiting anxiously for tomorrow's test results. Every day is important but this particular sickness is the one that most recently made us think we'd lose her. I'm ever so anxious to hear that it's healed!
Friday, September 18, 2009
Day 26 - Still waiting
The last three days have been pretty uneventful for Chloe. Things really haven't changed much. She's maintaining her oxygen saturation with oxygen levels in the 40's. She finished her antibiotics. They tried weaning her off dopamine unsucessfully but are trying again. We're hoping she can maintain her blood pressure without dopamine so she can start feeds on Tuesday. They're still planning on the ink test Monday to confirm that her intestines are in tact. Dave and I both noticed Chloe's belly looks big and round today. The nurse practitioner took a look and was unconcerned. Of course, I'm slightly paranoid. This was the sign we saw before she got really sick last week. Praying that she'll remain healthy and will wean successfully off her dopamine this weekend.
Thank you for all your prayers, messages, cards, and general love heading our direction. I'm comforted and happy to know that you all are reading Chloe's blog and thinking of her.
Thank you for all your prayers, messages, cards, and general love heading our direction. I'm comforted and happy to know that you all are reading Chloe's blog and thinking of her.
Tuesday, September 15, 2009
Day 23 - Close. Close. Close.
This morning the doctor said that Chloe's doing well. The discharge from her incision is "minimal" and the gas patterns in her belly are "perfect." Her oxygen levels are fine and her blood pressure is good enough to discontinue her dopamine. She feels that the hole in Chloe's intestine is closing and plans to do an ink test on Monday to confirm it's closed and begin feedings on Tuesday. Of course, she said this all straight-faced and without an ounce of emotion. She's a doctor and can't react like a giddy schoolgirl - which is the way I feel upon hearing this report! Can it really be so? I look at Chloe and she looks good. Maybe even bigger than a week ago. Yes! It is so!
We had a couple of small setbacks today. They tried to move Chloe up from the oscillator to the regular respirator. That lasted two hours and she couldn't handle it so they changed her back. Then they weaned her off of dopamine but her blood pressure and urine output both went down so they put her back on a tiny bit of dopamine. My first reaction is to be nervous but I somehow turned away from those feelings today. It's almost like a physical thing. I'm calm. Chloe's good and I have faith and trust. Her job is to grow and be with us. I just know it.
I thought about Leila a lot today. I took her urn to the funeral home and they gave it back to me with her ashes. With Chloe's scare this week I realized I haven't cried for Leila in days. I felt guilty about that when I realized it. Could I be forgetting about her already? No, of course not. I'm thinking about her now and what she did for us during her short time on earth. She kept Chloe company for six short months and now she's watching over her from above. I think she brings me calmness and reminds me of how much I can love. My sweet gentle beautiful girl.
I'm thinking about Solana, too, and trying to make sure she isn't forgotten in all this. She and I spent about four hours at the hospital today (with a one hour lunch/ice cream break). My first attempt at a visit with Solana since my mom left. I purchased Bendarooz at Walgreens right before we went. A very well spent $20. She played with them the whole time we were there and was the most perfect 4 year-old hospital guest ever! The nurses were amazed and charmed but who can blame them? Chloe has some big shoes to fill. As much attention as she's already getting, though, I think she'll do just fine!
My girls are all amazing in their own way. They bring tears to my eyes just thinking about them. There couldn't be a luckier Mommy around.
We had a couple of small setbacks today. They tried to move Chloe up from the oscillator to the regular respirator. That lasted two hours and she couldn't handle it so they changed her back. Then they weaned her off of dopamine but her blood pressure and urine output both went down so they put her back on a tiny bit of dopamine. My first reaction is to be nervous but I somehow turned away from those feelings today. It's almost like a physical thing. I'm calm. Chloe's good and I have faith and trust. Her job is to grow and be with us. I just know it.
I thought about Leila a lot today. I took her urn to the funeral home and they gave it back to me with her ashes. With Chloe's scare this week I realized I haven't cried for Leila in days. I felt guilty about that when I realized it. Could I be forgetting about her already? No, of course not. I'm thinking about her now and what she did for us during her short time on earth. She kept Chloe company for six short months and now she's watching over her from above. I think she brings me calmness and reminds me of how much I can love. My sweet gentle beautiful girl.
I'm thinking about Solana, too, and trying to make sure she isn't forgotten in all this. She and I spent about four hours at the hospital today (with a one hour lunch/ice cream break). My first attempt at a visit with Solana since my mom left. I purchased Bendarooz at Walgreens right before we went. A very well spent $20. She played with them the whole time we were there and was the most perfect 4 year-old hospital guest ever! The nurses were amazed and charmed but who can blame them? Chloe has some big shoes to fill. As much attention as she's already getting, though, I think she'll do just fine!
My girls are all amazing in their own way. They bring tears to my eyes just thinking about them. There couldn't be a luckier Mommy around.
Monday, September 14, 2009
Day 22 - No news
No news is good news, right? Seriously, I have nothing to report. Everything is pretty much the same as it was yesterday. One more day down! Get better Chloe! I love you!
People keep telling me to try and get enough sleep so I might try to do that tonight. Good night all.
People keep telling me to try and get enough sleep so I might try to do that tonight. Good night all.
Sunday, September 13, 2009
Day 21 - Three weeks down
It's almost 3am so I'm going to make this brief.
Chloe's doing well again! I'm so thankful for another good day and am officially optimistic now. I spent about 5 hours at the hospital with her today and she was fine the whole time! The signs are still pointing to a small hole and she seems to be doing well, overall. So well, in fact, that they changed out her isolette and let me hold her again! And she did really well while I held her - maintaining her O2 levels and everything! I don't think I'll post pictures for every isolette change but she had her eyes open for it today. You've just got to see her with her eyes open - a gorgeous sight!
Now we just need to keep praying that it really IS just a small hole in her intestines and that it can heal itself up!
Proud Mama
Look at those eyes!
Saturday, September 12, 2009
Day 20 - Yesterday and Today
First of all, I need to thank all of you who are praying for Chloe. This is probably the scariest time of our lives and your support is such a blessing. I'd also like to ask that you pray for my friend, Jen, and her little TTTS survivor, Ava. Ava is back in the hospital where they are doing testing for her breathing/apnea problems.
Before yesterday Chloe's blood pressure and infection issues had improved and we were mainly worried about her lungs. Then we were once again reminded of how quickly things can turn.
On Thursday they had started noticing that her belly was distended. It wasn't bad, though, so they were just going to watch it. By yesterday at noon it had gotten bad. Her belly was huge and round and hard looking - like a little balloon with too much air in it - and it had a dark green undertone. The doctor and nurse practitioner came and spoke to me as soon as I arrived. The general message was that she had developed a complication with her intestines that meant she probably wouldn't make it. Two hours later I had to leave to pick Solana up from Pre-K. The nurse promised to call me if I needed to get back immediately.
Dave arrived during my absence and, after talking to the doctor, confirmed my understanding of the situation. After picking up Solana I left her with my mom (I thank God for her about a million times a day) and they dropped me off at the hospital. We had about 4 hours to wait for the pediatric surgeon and I pretty much cried the whole time. Dave was on the phone with Uhaul, DirectTV, and friends cancelling our move scheduled for the next morning. We had difficulty finding a priest to perform an immediate baptism. The chaplain came and asked if this was "emergent" and the nurse/respiratory therapist in the room both responded "yes" for me before I could process his question. Finally, a priest from UD arrived to perform the baptism. I was so grateful he was able to make it.
The surgeon arrived moments later and assessed the situation. He agreed with the doctor that there was probably a leak from her intestines into her stomach. This was poisoning her body and causing her belly to be distended, along with a myriad of other things (typical chain reaction of problems that happens whenever a premie gets sick). He decided that the best approach would be to cut an opening into her side so he could get a look at her intestines and then insert drainage tubes to get all that bad stuff out of her belly.
We consented and went to the parent's lounge during the procedure. I swear I have never prayed and cried so hard in my life. Dave and I still have headaches from it. The procedure went well. The surgeon could not see any diseased intestine from the incision so we know at least part of her intestine is healthy. The drains began working immediately. Lots of fluid and gook came out right away. We spent some more time with her before going home. I wanted badly to stay but I was so exhausted I could hardly speak.
Today
I arrived this morning to a slew of encouraging news. Her O2 levels are great - in the 20's (almost the same air that we breathe). We haven't seen O2 levels this good since week 1. Her lung X-ray looks amazingly better than it has in several days. White blood cell count is down - antibiotics are working. Drainage stopped - a good sign that the hole in her intestine was small and is no longer leaking (maybe healing).
It's difficult to know what to think/feel when they tell you one day you're going to lose your daughter and the next day tell you a bunch of encouraging news. My first reaction was to protect myself. I can't get excited about this and have them run my heart through a shredder again. But Dave made me reconsider. We need to be thankful for every day that we have with Chloe. Yesterday we thought she was lost to us and that was pure misery. If I live every day waiting to lose her I won't enjoy the time that I have with her. Today we had a good day with her. She was showing signs that she might make it. She was even a bit feisty again. At one point she was flailing her little arms around and grabbed hold of the IV line coming from her head. I called for help as I put disinfectant foam on my hands and the nurse rescued her IV from her strong little grip. Then, in hopes of calming her, I was able to rest my heands on the bottom of her feet and forearm (with the tip of my pinky finger in her firm grip). She took a pacifier and settled down right away as I hummed to her for about twenty minutes. She fell asleep! The first time I was able to comfort my little girl to sleep. I took the pacifier out of her mouth after her eyelids were so heavy that they shut and had a flashback to when I did the same thing for Solana. Yesterday I would never have imagined the opportunity to hum Chloe to sleep and I'm so grateful for that moment. She is sooo beautiful and such a sweetheart for giving me that gift.
It will be a week or so before we have a good idea on the hole in her intestines. (She did have more drainage today, afterall.) We will be praying long and hard all week that the good signs continue and that the hole is small and healing. If this is not the case we very well may lose her, afterall. I will try my very best to stay positive all week. I'll also be praying.
Before yesterday Chloe's blood pressure and infection issues had improved and we were mainly worried about her lungs. Then we were once again reminded of how quickly things can turn.
On Thursday they had started noticing that her belly was distended. It wasn't bad, though, so they were just going to watch it. By yesterday at noon it had gotten bad. Her belly was huge and round and hard looking - like a little balloon with too much air in it - and it had a dark green undertone. The doctor and nurse practitioner came and spoke to me as soon as I arrived. The general message was that she had developed a complication with her intestines that meant she probably wouldn't make it. Two hours later I had to leave to pick Solana up from Pre-K. The nurse promised to call me if I needed to get back immediately.
Dave arrived during my absence and, after talking to the doctor, confirmed my understanding of the situation. After picking up Solana I left her with my mom (I thank God for her about a million times a day) and they dropped me off at the hospital. We had about 4 hours to wait for the pediatric surgeon and I pretty much cried the whole time. Dave was on the phone with Uhaul, DirectTV, and friends cancelling our move scheduled for the next morning. We had difficulty finding a priest to perform an immediate baptism. The chaplain came and asked if this was "emergent" and the nurse/respiratory therapist in the room both responded "yes" for me before I could process his question. Finally, a priest from UD arrived to perform the baptism. I was so grateful he was able to make it.
The surgeon arrived moments later and assessed the situation. He agreed with the doctor that there was probably a leak from her intestines into her stomach. This was poisoning her body and causing her belly to be distended, along with a myriad of other things (typical chain reaction of problems that happens whenever a premie gets sick). He decided that the best approach would be to cut an opening into her side so he could get a look at her intestines and then insert drainage tubes to get all that bad stuff out of her belly.
We consented and went to the parent's lounge during the procedure. I swear I have never prayed and cried so hard in my life. Dave and I still have headaches from it. The procedure went well. The surgeon could not see any diseased intestine from the incision so we know at least part of her intestine is healthy. The drains began working immediately. Lots of fluid and gook came out right away. We spent some more time with her before going home. I wanted badly to stay but I was so exhausted I could hardly speak.
Today
I arrived this morning to a slew of encouraging news. Her O2 levels are great - in the 20's (almost the same air that we breathe). We haven't seen O2 levels this good since week 1. Her lung X-ray looks amazingly better than it has in several days. White blood cell count is down - antibiotics are working. Drainage stopped - a good sign that the hole in her intestine was small and is no longer leaking (maybe healing).
It's difficult to know what to think/feel when they tell you one day you're going to lose your daughter and the next day tell you a bunch of encouraging news. My first reaction was to protect myself. I can't get excited about this and have them run my heart through a shredder again. But Dave made me reconsider. We need to be thankful for every day that we have with Chloe. Yesterday we thought she was lost to us and that was pure misery. If I live every day waiting to lose her I won't enjoy the time that I have with her. Today we had a good day with her. She was showing signs that she might make it. She was even a bit feisty again. At one point she was flailing her little arms around and grabbed hold of the IV line coming from her head. I called for help as I put disinfectant foam on my hands and the nurse rescued her IV from her strong little grip. Then, in hopes of calming her, I was able to rest my heands on the bottom of her feet and forearm (with the tip of my pinky finger in her firm grip). She took a pacifier and settled down right away as I hummed to her for about twenty minutes. She fell asleep! The first time I was able to comfort my little girl to sleep. I took the pacifier out of her mouth after her eyelids were so heavy that they shut and had a flashback to when I did the same thing for Solana. Yesterday I would never have imagined the opportunity to hum Chloe to sleep and I'm so grateful for that moment. She is sooo beautiful and such a sweetheart for giving me that gift.
It will be a week or so before we have a good idea on the hole in her intestines. (She did have more drainage today, afterall.) We will be praying long and hard all week that the good signs continue and that the hole is small and healing. If this is not the case we very well may lose her, afterall. I will try my very best to stay positive all week. I'll also be praying.
Friday, September 11, 2009
Outlook bad
This is Leticia, Cynthia's sister. She asked me to post something so you all will know what's going on.
Chloe has gotten another infection and her little body isn't handling it well. Cynthia's text to me said, "She's really bad off. Her outlook for survival is not good. We always seeem to beat our (good) odds & end up bad. If there's a time to beat the odds it's now."
That's all I know. Cynthia and Dave are at the hospital making arrangements for Chloe to get baptized. As I find out more, I'll be sure to update you all. Please pray! Chloe, my sister, Dave, and Solana need us more now than ever!
Chloe has gotten another infection and her little body isn't handling it well. Cynthia's text to me said, "She's really bad off. Her outlook for survival is not good. We always seeem to beat our (good) odds & end up bad. If there's a time to beat the odds it's now."
That's all I know. Cynthia and Dave are at the hospital making arrangements for Chloe to get baptized. As I find out more, I'll be sure to update you all. Please pray! Chloe, my sister, Dave, and Solana need us more now than ever!
Thursday, September 10, 2009
Day 18 - New Challenge
Chloe's belly was bloated today and they couldn't figure out why. They discovered late this afternoon that she has some fluid on her belly. I still don't really understand what that means but it sounds like it's nothing right now and we hope it doesn't turn into anything. The nurse practitioner said they're just "going to watch it" for now. That's seems to be one of their most favorite phrases in the NICU... It makes me nervous. One thing that they did tell me is that this means she's probably not healthy enough for feedings. As important as it is to get some nutrition into her to make her strong we still can't do it. Frustrating.
I think I need to go to my friend Kris's facebook page really quickly. He always has inspirational words on there. Ok - here we go:
God is able to sustain us! Nehemiah 9:21 says, "For forty years [God] sustained them in the wilderness, and they lacked nothing. Their clothes did not wear out, and their feet did not swell." Praise God!
I think I need to go to my friend Kris's facebook page really quickly. He always has inspirational words on there. Ok - here we go:
God is able to sustain us! Nehemiah 9:21 says, "For forty years [God] sustained them in the wilderness, and they lacked nothing. Their clothes did not wear out, and their feet did not swell." Praise God!
Wednesday, September 9, 2009
Day 17 - Excitement
Chloe seems to be doing pretty well today. Her lung x-rays show slight improvement and her blood pressure is stable after stopping dopamine. They might be able to start feedings in a day or two if her blood pressure remains stable. Plus, they lowered her morphine and she seems to be handling that ok, as well. We like boring days like this. Keep up the good work baby doll!! You can do it!!
I guess we would have gone into shock with such a low-stress day, though. On the way to Solana's first day of Pre-K we were rear-ended at a stop light. Solana and I are fine but the back of our two month-old minivan is smashed to smitherines. I'm so glad for this little bit of excitement because I don't know what I would have done without it (can you see my eyes rolling as I type that?)
I guess we would have gone into shock with such a low-stress day, though. On the way to Solana's first day of Pre-K we were rear-ended at a stop light. Solana and I are fine but the back of our two month-old minivan is smashed to smitherines. I'm so glad for this little bit of excitement because I don't know what I would have done without it (can you see my eyes rolling as I type that?)
Tuesday, September 8, 2009
Day 16
So tired. I'm not sure how it is possible to be so tired from sitting all day or how my days are so long lately. I'm not doing any housework and am just barely mothering Solana. My mom is such a blessing! I have faith we'll make it work when my mom leaves. I'm just curious to see how that will happen...
Not much to report today. Chloe is still being weaned off of dopamine so no milk, yet. They've also lowered her morphine. It seems like a good thing that they're taking her off morphine but I worry that she's feeling pain or discomfort. She's such a tiny little thing and is constantly getting new IV's (she had 5 in 7 days) and gets her heel poked several times a day for blood. Plus, there's a tube down her throat and all the way to her belly and the oscillator kind of jiggles her around all the time. I hate to think how all of that feels. She seemed to be having a hard time this afternoon and Dave laid his hands over her to try and comfort her. I think if I pray hard enough for it then she'll be able to keep that feeling all night long. If God will lay his hands over her like Dave did when we're not there then I think she'll be ok.
Our biggest concern is still her lungs. Her x-rays still show "white-out." The doctor corrected my understanding today. This doesn't necessarily indicate fluid in the lungs but rather, collapsed lungs. They're so tiny and delicate that they just aren't opening the way they should. Unlike adults, premies still have the ability to grow lung tissue. Yes!
My prayer requests for the day:
- Let Chloe's blood pressure remain stable so that she can be fully weaned off of dopamine.
- Please keep her safe from pain and discomfort as she is weaned from morphine.
- Pray that the antibiotics she finished today fully eliminated the infection that set her back last week.
- Let her blood flow as needed throughout her body to her extremeties, kidneys, and stomach so that her body can pee and digest milk when it's asked to do so.
- Please give her body the strength to heal her damaged lungs so that she can eventually breathe on her own with full use of her lungs.
Not much to report today. Chloe is still being weaned off of dopamine so no milk, yet. They've also lowered her morphine. It seems like a good thing that they're taking her off morphine but I worry that she's feeling pain or discomfort. She's such a tiny little thing and is constantly getting new IV's (she had 5 in 7 days) and gets her heel poked several times a day for blood. Plus, there's a tube down her throat and all the way to her belly and the oscillator kind of jiggles her around all the time. I hate to think how all of that feels. She seemed to be having a hard time this afternoon and Dave laid his hands over her to try and comfort her. I think if I pray hard enough for it then she'll be able to keep that feeling all night long. If God will lay his hands over her like Dave did when we're not there then I think she'll be ok.
Our biggest concern is still her lungs. Her x-rays still show "white-out." The doctor corrected my understanding today. This doesn't necessarily indicate fluid in the lungs but rather, collapsed lungs. They're so tiny and delicate that they just aren't opening the way they should. Unlike adults, premies still have the ability to grow lung tissue. Yes!
My prayer requests for the day:
- Let Chloe's blood pressure remain stable so that she can be fully weaned off of dopamine.
- Please keep her safe from pain and discomfort as she is weaned from morphine.
- Pray that the antibiotics she finished today fully eliminated the infection that set her back last week.
- Let her blood flow as needed throughout her body to her extremeties, kidneys, and stomach so that her body can pee and digest milk when it's asked to do so.
- Please give her body the strength to heal her damaged lungs so that she can eventually breathe on her own with full use of her lungs.
Monday, September 7, 2009
Day 15 - Duct is Closed!
Praises! We had some good news today. The duct in Chloe's heart is closed! That and the fact that she doesn't have any bleeds on her brain are really good news. In addition, Dave and I both had some interaction with her. We didn't get to have an isolette change yesterday so we really appreciated today. I got to take her temperature and change her diaper. Dave also got to do those things plus he got to hold her in his hands while the nurse changed out her bedding. She's still really sensitive to stimulation so we rarely get to touch or hold her. These moments are so special to us.
Our main concern now is her lungs. She was born well before her lungs finished developing and the x-rays keep showing fluid in them. They have switched her back and forth on different respirators to try and find just the right balance to give her the help she needs. She's back on the oscillator today. This type of respirator gives her small quick breaths that keep her lungs open but don't stretch them out too much. Hopefully, it will help keep her oxygenated without creating too much scar tissue in her lungs.
Our next area of concern for the day is the fact that she's still not receiving any feedings. She's been on dopamine to assist with her blood pressure problems and can't receive any feedings while on dopamine. She needs to get some food in her belly to grow and really hasn't had an opportunity for food in her belly with everything else going on. Hopefully, they'll be able to wean her off the dopamine tonight and get some milk into her belly tomorrow.
Very very delicately changing Chloe's diaper. Her skin is so sensitive. I don't want to rub anything against it for fear of abrasion. Yes, my upper lip was sweaty...
Solana's getting a sneak peak at her sister.
Dave holds Chloe' in his hands as the nurse changes out her bedding. I'm pretty sure his fingers are thicker than her thighs.
My goodness she is tiny.
Our main concern now is her lungs. She was born well before her lungs finished developing and the x-rays keep showing fluid in them. They have switched her back and forth on different respirators to try and find just the right balance to give her the help she needs. She's back on the oscillator today. This type of respirator gives her small quick breaths that keep her lungs open but don't stretch them out too much. Hopefully, it will help keep her oxygenated without creating too much scar tissue in her lungs.
Our next area of concern for the day is the fact that she's still not receiving any feedings. She's been on dopamine to assist with her blood pressure problems and can't receive any feedings while on dopamine. She needs to get some food in her belly to grow and really hasn't had an opportunity for food in her belly with everything else going on. Hopefully, they'll be able to wean her off the dopamine tonight and get some milk into her belly tomorrow.
Very very delicately changing Chloe's diaper. Her skin is so sensitive. I don't want to rub anything against it for fear of abrasion. Yes, my upper lip was sweaty...
Solana's getting a sneak peak at her sister.
Dave holds Chloe' in his hands as the nurse changes out her bedding. I'm pretty sure his fingers are thicker than her thighs.
My goodness she is tiny.Sunday, September 6, 2009
Day 14 - Cosmic Joke
It's like a weird cosmic joke. I suddenly find myself surrounded by 1. Twins. I swear twins are everywhere! It seems like every time I turn around I find myself thinking, "Seriously?" How can there possibly be so many twins in my general viscinity? At least none of them have been identical girls. I'm not sure I could handle that. And 2. Pregnant women talking about how much they want to have their babies early. Now, I must admit, that in my life I have joked a time or two about how I wouldn't have minded if Solana had come a bit early so I completely understand where they're coming from and don't begrudge them these silly comments one bit. But, if you can imagine, I'm kind of sensitive to this line of talk right now and don't understand why I'm suddenly surrounded by it. When and how did early delivery become something I hear about on a daily basis? Like I said - cosmic joke.
Now, to important matters. Chloe's heart valve reopened. This is not good but they can give her some medicine to try and close it. The problem is that a side affect of this medicine is that it stops her from peeing. If she stops peeing then fluids will build up in her body and they'll probably accumulate in her lungs. They noticed some fluid in her lungs today and we really don't want that to continue so they gave her another drug that's like a water pill to try and encourage urination.
And get this. These drugs are going into her new IV that she got this morning because the one they put in yesterday (in her head) came out on it's own. Yes, I'm serious. BUT - - - they tell me that they got this new one (also in her head) in on the first try. Thank you Jesus!
Overall, I think this was a pretty good day for Chloe. While some things aren't going exactly as we want, many things are getting better. Her blood gasses look good, she's no longer acidic, her O2 was only around 55%, she's tolerating the nurses bother her better, the new IV is in the middle of her head so they were able to lay her on her right side and she seemed to like that, etc. And she turned 2 weeks old today completing what would have been week 26 in utero! Let's keep praying.
Now, to important matters. Chloe's heart valve reopened. This is not good but they can give her some medicine to try and close it. The problem is that a side affect of this medicine is that it stops her from peeing. If she stops peeing then fluids will build up in her body and they'll probably accumulate in her lungs. They noticed some fluid in her lungs today and we really don't want that to continue so they gave her another drug that's like a water pill to try and encourage urination.
And get this. These drugs are going into her new IV that she got this morning because the one they put in yesterday (in her head) came out on it's own. Yes, I'm serious. BUT - - - they tell me that they got this new one (also in her head) in on the first try. Thank you Jesus!
Overall, I think this was a pretty good day for Chloe. While some things aren't going exactly as we want, many things are getting better. Her blood gasses look good, she's no longer acidic, her O2 was only around 55%, she's tolerating the nurses bother her better, the new IV is in the middle of her head so they were able to lay her on her right side and she seemed to like that, etc. And she turned 2 weeks old today completing what would have been week 26 in utero! Let's keep praying.
Saturday, September 5, 2009
Day 13 - Getting Better/IV drama
I'm sitting in Chloe's room right now while the third nurse tries to get an IV into her fragile little body. They had stuck her four times before I had to leave her side to make room for a third nurse to come in and try. I'm not sure how much good I was doing by her side, anyway. I was cupping her little head and humming to her but I was getting upset and had a hard time humming. Plus, my palms were getting sweaty and I kept having to lean back so that my tears wouldn't fall into her isolette.
I questioned the doctor and nurse practitioner, who happened to be coming by on rounds during these IV attempts, and they told me that they try to keep IV's in place until they go "bad." A bad IV means that it has come out of the vein and the fluid goes into the tissue around her vein instead of into it. Tiny baby veins are so delicate that IV's don't last super long. I was here for the first IV removal this week, though, and know that it had NOT gone bad. The nurse just took it out because she thought Chloe wouldn't need it again. We're on her third IV this week and I'm less than pleased. It's a difficult balance to express displeasure to the people caring for your baby, as well as, appreciation and respectfulness of all that they are doing. I think I pulled it off well, but come to think of it, I suppose I feel it.
We really are lucky to enjoy the wonderful quality of care that Chloe receives. And I'm thrilled that they are finally giving us good reports again. She seems to be improving quite a bit!
-The dopamine and hydrocortisone seem to be working well and they hope to start weaning her off the dopamine soon.
-She's urinating quite a bit.
-Blood pressure is up.
-O2 levels are up and so they're able to lower the O2 on her respirators.
-White blood cells are down so we think the antibiotics are working (even though we still haven't gotten a confirmation of infection).
Now we want to pray that:
-they can sucessfully wean her off the dopamine (they can try feedings again once she's weaned)
-her kidneys are getting adequate blood supplies to continue appropriate urine output
-her stomach gets adequate blood supply in preparation to digest my yummy milk that they will give her soon
-she is protected from pain and discomfort as the nurses do all they can to care for her
-the antibiotics continue to work and she is protected from future infections
Note: They finally got the IV in. It's in her head and looks pretty bad but they couldn't get it in anywhere else. I hope it hurt less going into her head, anyway. Let's also pray that this IV lasts a long time and they don't have to invade on her poor little arms and feet again any time soon!
Here's my little darling snoozing with her new IV in her little head. She's snuggled up with her snoodle doll. I wear it inside my shirt and then bring it to her so she can snuggle up next to it.
I questioned the doctor and nurse practitioner, who happened to be coming by on rounds during these IV attempts, and they told me that they try to keep IV's in place until they go "bad." A bad IV means that it has come out of the vein and the fluid goes into the tissue around her vein instead of into it. Tiny baby veins are so delicate that IV's don't last super long. I was here for the first IV removal this week, though, and know that it had NOT gone bad. The nurse just took it out because she thought Chloe wouldn't need it again. We're on her third IV this week and I'm less than pleased. It's a difficult balance to express displeasure to the people caring for your baby, as well as, appreciation and respectfulness of all that they are doing. I think I pulled it off well, but come to think of it, I suppose I feel it.
We really are lucky to enjoy the wonderful quality of care that Chloe receives. And I'm thrilled that they are finally giving us good reports again. She seems to be improving quite a bit!
-The dopamine and hydrocortisone seem to be working well and they hope to start weaning her off the dopamine soon.
-She's urinating quite a bit.
-Blood pressure is up.
-O2 levels are up and so they're able to lower the O2 on her respirators.
-White blood cells are down so we think the antibiotics are working (even though we still haven't gotten a confirmation of infection).
Now we want to pray that:
-they can sucessfully wean her off the dopamine (they can try feedings again once she's weaned)
-her kidneys are getting adequate blood supplies to continue appropriate urine output
-her stomach gets adequate blood supply in preparation to digest my yummy milk that they will give her soon
-she is protected from pain and discomfort as the nurses do all they can to care for her
-the antibiotics continue to work and she is protected from future infections
Note: They finally got the IV in. It's in her head and looks pretty bad but they couldn't get it in anywhere else. I hope it hurt less going into her head, anyway. Let's also pray that this IV lasts a long time and they don't have to invade on her poor little arms and feet again any time soon!
Here's my little darling snoozing with her new IV in her little head. She's snuggled up with her snoodle doll. I wear it inside my shirt and then bring it to her so she can snuggle up next to it.
Friday, September 4, 2009
We are Blessed
I have to take a moment to reflect on all the love and support we've received through this most difficult time in our lives. We are blessed to have an amazing family.
Dave's sister, Carol, is busy with three kiddos of her own and one on the way. Yet she always keeps in touch and is constantly sending little gifts for Solana and the twins. My sister, Leticia, is my ever vigilant prayer warrior and support person. I owe many days of sanity to her relentless phone calls. And my mother has put her life on hold to spend most of the last two months in Ohio helping us survive my bedrest and now the challenge of NICU. And Dave. I thank God every day for such a wonderful husband. He has been through all of this right along side me and yet, manages to take care of Solana and me physically and emotionally. Some people credit me with being "strong" through all of this but I am such a mess. I wouldn't be much more than a soggy blob without Dave. I couldn't be a luckier girl.
But I already knew I was blessed with family and, as much as they have come through for me in such amazing ways, I'm not terribly surprised.
What has surprised me is the amount of love and support we've received from strangers and new friends. Who knew that Facebook would be the vehicle to send hundreds (or possibly thousands) of prayers heaven-bound for our twins and now for Chloe? Many times I stared at Facebook in amazement at all the messages from friends and friends of Leticia. Beautiful, supportive, and loving messages. And who knew that there are so many other TTTS mothers out there on the TTTS Foundation website? Their stories and experience have been invaluable to me on this journey and I honestly would feel lost and alone without them. I'm so thankful for all of those wonderful prayers and blessings.
And then there are our new Ohio friends. Friends we've only known a few short months but who have treated us like family. How is it possible that we surrounded ourselves with such amazing people right before our time of need? I'll tell you what. I stopped asking myself "why" this happened to us because I don't believe that it was God's plan or hand that took our baby girl, Leila, away from us. And I don't think that God intended for Chloe to be born premature and struggle to survive in the NICU for months. I think sometimes bad things just happen to good people (there's actually a good book with this title). TTTS is a completely random biological phenomenon that can happen to anyone. We did nothing to bring this on ourselves nor were we chosen to hurt. What I DO believe, though, is that we are blessed by God to be surrounded by people whose hearts have been touched by Him. He saw our pain, heard our prayers, and filled their hearts with generosity.
Thank you to all of you who have prayed for Chloe and Leila. Thank you for reaching out and touching us with your kindess. Each prayer, message, and generous act of kindness has lifted my spirit and I will ever be grateful for that.
Dave's sister, Carol, is busy with three kiddos of her own and one on the way. Yet she always keeps in touch and is constantly sending little gifts for Solana and the twins. My sister, Leticia, is my ever vigilant prayer warrior and support person. I owe many days of sanity to her relentless phone calls. And my mother has put her life on hold to spend most of the last two months in Ohio helping us survive my bedrest and now the challenge of NICU. And Dave. I thank God every day for such a wonderful husband. He has been through all of this right along side me and yet, manages to take care of Solana and me physically and emotionally. Some people credit me with being "strong" through all of this but I am such a mess. I wouldn't be much more than a soggy blob without Dave. I couldn't be a luckier girl.
But I already knew I was blessed with family and, as much as they have come through for me in such amazing ways, I'm not terribly surprised.
What has surprised me is the amount of love and support we've received from strangers and new friends. Who knew that Facebook would be the vehicle to send hundreds (or possibly thousands) of prayers heaven-bound for our twins and now for Chloe? Many times I stared at Facebook in amazement at all the messages from friends and friends of Leticia. Beautiful, supportive, and loving messages. And who knew that there are so many other TTTS mothers out there on the TTTS Foundation website? Their stories and experience have been invaluable to me on this journey and I honestly would feel lost and alone without them. I'm so thankful for all of those wonderful prayers and blessings.
And then there are our new Ohio friends. Friends we've only known a few short months but who have treated us like family. How is it possible that we surrounded ourselves with such amazing people right before our time of need? I'll tell you what. I stopped asking myself "why" this happened to us because I don't believe that it was God's plan or hand that took our baby girl, Leila, away from us. And I don't think that God intended for Chloe to be born premature and struggle to survive in the NICU for months. I think sometimes bad things just happen to good people (there's actually a good book with this title). TTTS is a completely random biological phenomenon that can happen to anyone. We did nothing to bring this on ourselves nor were we chosen to hurt. What I DO believe, though, is that we are blessed by God to be surrounded by people whose hearts have been touched by Him. He saw our pain, heard our prayers, and filled their hearts with generosity.
Thank you to all of you who have prayed for Chloe and Leila. Thank you for reaching out and touching us with your kindess. Each prayer, message, and generous act of kindness has lifted my spirit and I will ever be grateful for that.
Day 12 - Hanging in There
We've been waiting for some good news since Chloe's first bad day. It's been a long few days but I think she's finally on the rebound. We got a good report from her nurse tonight. Her blood pressure seems to be up and stabalizing. The dopamine and cortisol are doing their jobs! We believe that her low blood pressure started a chain reaction of problems and that raising it will get her on the right track again.
Here's what we're praying for:
- Her blood pressure continues to stabalize and she can be weaned off the dopamine and cortisol in the next day or so.
- Her PDA (hole in the heart that closes for full-term babies) remains closed
- Kidneys get increased blood flow as her blood pressure rises so that she continues to increase and maintain an appropriate urine output.
- Stomach gets increased blood flow as her blood pressure rises so that she can digest mama's milk as soon as they begin feeds again.
Here's what we're praying for:
- Her blood pressure continues to stabalize and she can be weaned off the dopamine and cortisol in the next day or so.
- Her PDA (hole in the heart that closes for full-term babies) remains closed
- Kidneys get increased blood flow as her blood pressure rises so that she continues to increase and maintain an appropriate urine output.
- Stomach gets increased blood flow as her blood pressure rises so that she can digest mama's milk as soon as they begin feeds again.
Thursday, September 3, 2009
Chloe knows Mama and Daddy
Chloe's been leaning heavily on her respirators and the nurses can't seem to get her oxygen levels down without the O2 saturation in her body getting too low.
I spent some time humming to her today and decided that she really likes my singing. She must know I'm her Mama. Every time I hummed her O2 saturation would increase. It's nice to feel as though I'm actually doing something to help my little girl. The same thing happened for Dave when we went back this evening. He would talk and sing to her and she'd just eat it up. Of course, she used to react to his voice from inside my belly. It probably sounds the same from inside her isolette.
The doctor really wants Chloe to start getting some nutrituion so they started her back on milk feedings today. There's a little feeding tube that goes into her mouth and all the way down into her belly - that's how they get the milk in. Unfortunately, that's also how they're getting the milk out. They're trying 1cc feedings every four hours. Before putting in a new 1cc of milk they can actual suck out any remaining fluid from the last feeding and there seems to be plenty left. She's not digesting. Prayer for the night. "Dear Lord, Please make Chloe's little body digest the nourishing milk she is fed so that she can grow bigger, stronger, and closer to coming home to her loving family. In Your name I pray. Amen"
I spent some time humming to her today and decided that she really likes my singing. She must know I'm her Mama. Every time I hummed her O2 saturation would increase. It's nice to feel as though I'm actually doing something to help my little girl. The same thing happened for Dave when we went back this evening. He would talk and sing to her and she'd just eat it up. Of course, she used to react to his voice from inside my belly. It probably sounds the same from inside her isolette.
The doctor really wants Chloe to start getting some nutrituion so they started her back on milk feedings today. There's a little feeding tube that goes into her mouth and all the way down into her belly - that's how they get the milk in. Unfortunately, that's also how they're getting the milk out. They're trying 1cc feedings every four hours. Before putting in a new 1cc of milk they can actual suck out any remaining fluid from the last feeding and there seems to be plenty left. She's not digesting. Prayer for the night. "Dear Lord, Please make Chloe's little body digest the nourishing milk she is fed so that she can grow bigger, stronger, and closer to coming home to her loving family. In Your name I pray. Amen"
Wednesday, September 2, 2009
Randomness
Chloe had a pretty good day. Her blood gasses are looking better. The doctor wants to start feeding her milk again tomorrow if her blood draws continue to look good. Great! I spent about five hours with her and it was a fairly uneventful day. We like those days.
Unfortunately, they decided to give her more blood to raise her red blood cell count and so they had to put a new IV in because they already took yesterday's IV line out. I'm sure this won't be her last IV but I was pretty upset that they had to put in a new one. I wish they had anticipated needing it again and left it in. It hurts me to get an IV so I imagine it hurts her, as well. I feel guilty and embarrassed to admit this but I looked away - couldn't even watch them put it in.
Chloe opened her eyes for the first time a few days ago but she's had a little mask over them ever since because she's been under the billi lights. They took off the lights yesterday and covered the isolette to keep her in a dark calm environment. As I peeked in today she opened her eyes A LOT. That was probably the coolest thing I've ever seen. I thoroughly enjoyed watching her little face - it felt like I was looking at her for the first time. She looks so beautiful! That is the feeling of pure joy.
I walked to the cafeteria to grab some lunch and on the way back into the maternity building I saw a new mother being wheeled outside by her husband - new baby in her lap. I knew I shouldn't watch but I found myself drawn to the scene. They looked so happy. It put a smile on my face and I just stopped and watched - drawn like a moth to a flame. My mind raced. "What are you doing? You shouldn't watch this. But I'm not upset. They look so happy and sweet. What's wrong with watching?" Then it happened. My face cracked and I was suddenly race-walking (in my post C-section way) to the elevators to hide my face. I knew it would happen. I don't know why I torture myself. Stupid stupid stupid.
Dave picked me up from the hospital and we drove to the new house to pay the painter. He's completely finished now and the house looks fantastic! We really bought a fantastic house! I love it can't wait to move and be settled in it!
We attended a parent's meeting at our church, where Solana will begin Pre-K on Wednesday. On the way there I saw an airplane flying overhead. Dave has pointed out and told me about these planes that are based out of Wright Patterson AFB nearby. They're enormous! C-5's or something like that. They're so big, in fact, that it looks like they're barely moving across the sky and might fall out of the sky at any moment. For some reason, watching this plane move very very slowly across the horizon made me think about the fact that life goes on for the rest of the world. We're in this weird little holding pattern waiting for Chloe to get out of the hospital and it almost seems like it's not real life - like we're living some weird dream sequence that just isn't ending... But it is real life. It's our real life and I need to own it.
I LOVE Solana's school. She's going to be a St. Albert the Great "Stag" (get it?) Her teacher is awesome and I can't wait to get involved. I signed up to make play-doh for the class and Dave already wants to volunteer for the Christmas tree sale. We purchased a home in Centerville because of the great schools but Dave jokes that we might not use them because I love St. Albert so much. LOL! I guess we'll see!
Two packages arrived today. Is it possible for something to be ironic and appropriate at the same time? The first package was filled with super cute Hershey's candy bars called "HERESHEIS" bars. They're like little birth announcements and have all of Chloe's birth information on them. Just adorable! The second package was Leila's urn. It's so small and has an Italian Renaissance-style angel with huge wings embracing the urn. I think it's absolutely beautiful and I love the thought of angels embracing and caring for my Leila in heaven.
Unfortunately, they decided to give her more blood to raise her red blood cell count and so they had to put a new IV in because they already took yesterday's IV line out. I'm sure this won't be her last IV but I was pretty upset that they had to put in a new one. I wish they had anticipated needing it again and left it in. It hurts me to get an IV so I imagine it hurts her, as well. I feel guilty and embarrassed to admit this but I looked away - couldn't even watch them put it in.
Chloe opened her eyes for the first time a few days ago but she's had a little mask over them ever since because she's been under the billi lights. They took off the lights yesterday and covered the isolette to keep her in a dark calm environment. As I peeked in today she opened her eyes A LOT. That was probably the coolest thing I've ever seen. I thoroughly enjoyed watching her little face - it felt like I was looking at her for the first time. She looks so beautiful! That is the feeling of pure joy.
I walked to the cafeteria to grab some lunch and on the way back into the maternity building I saw a new mother being wheeled outside by her husband - new baby in her lap. I knew I shouldn't watch but I found myself drawn to the scene. They looked so happy. It put a smile on my face and I just stopped and watched - drawn like a moth to a flame. My mind raced. "What are you doing? You shouldn't watch this. But I'm not upset. They look so happy and sweet. What's wrong with watching?" Then it happened. My face cracked and I was suddenly race-walking (in my post C-section way) to the elevators to hide my face. I knew it would happen. I don't know why I torture myself. Stupid stupid stupid.
Dave picked me up from the hospital and we drove to the new house to pay the painter. He's completely finished now and the house looks fantastic! We really bought a fantastic house! I love it can't wait to move and be settled in it!
We attended a parent's meeting at our church, where Solana will begin Pre-K on Wednesday. On the way there I saw an airplane flying overhead. Dave has pointed out and told me about these planes that are based out of Wright Patterson AFB nearby. They're enormous! C-5's or something like that. They're so big, in fact, that it looks like they're barely moving across the sky and might fall out of the sky at any moment. For some reason, watching this plane move very very slowly across the horizon made me think about the fact that life goes on for the rest of the world. We're in this weird little holding pattern waiting for Chloe to get out of the hospital and it almost seems like it's not real life - like we're living some weird dream sequence that just isn't ending... But it is real life. It's our real life and I need to own it.
I LOVE Solana's school. She's going to be a St. Albert the Great "Stag" (get it?) Her teacher is awesome and I can't wait to get involved. I signed up to make play-doh for the class and Dave already wants to volunteer for the Christmas tree sale. We purchased a home in Centerville because of the great schools but Dave jokes that we might not use them because I love St. Albert so much. LOL! I guess we'll see!
Two packages arrived today. Is it possible for something to be ironic and appropriate at the same time? The first package was filled with super cute Hershey's candy bars called "HERESHEIS" bars. They're like little birth announcements and have all of Chloe's birth information on them. Just adorable! The second package was Leila's urn. It's so small and has an Italian Renaissance-style angel with huge wings embracing the urn. I think it's absolutely beautiful and I love the thought of angels embracing and caring for my Leila in heaven.
Tuesday, September 1, 2009
Bad Day
Chloe had her first bad day today. We had been spoiled. Everything seemed to be going right for her first nine days. I was becoming complacent and getting too used good news.
As soon as I walked into Chloe's room I knew something was wrong. There was a second respirator running and she had additional lines running into her little body. The nurse practitioner saw me arrive and followed me into the room. She began to explain everything that was happening and I had to work really hard to maintain enough composure to listen. The tears were already flowing.
Here's a summary of her first bad day:
- Her CO2 level was too high. Thus, the second (Jet) Respirator to help her get rid of some CO2
- Her blood was acidic. This happens with CO2 levels are too high.
- Her O2 level was too low. They raised the O2 level on her respirators to around 59% in order to keep the O2 in her body high enough. (Ideally, she would be at 21% - breathing the same air as us.)
- She stopped digesting milk so they stopped her feedings and put her back on an IV drip.
- Her white blood cells were high. They think she may have an infection.
- Her red blood cells are low. She had a new IV in her foot to give her some extra blood.
It's overwhelming to hear all these bad things at once but the nurses didn't seem too concerned. They are treating everything and the doctor said that these problems, while they hope not to see them, are common with babies as premature as Chloe. I couldn't help but think - she could die from an infection...
They do several blood draws a day and I got to put my hands over Chloe's head and legs to try and comfort her during one such draw. They have to poke her heel to make it bleed and she was pretty upset about the procedure. She has no voice because of the tubes down her throat but I could see her crying. It was that baby cry/scream where their face turns red. So painful to watch. Tears were pouring down my face as I tried to remain calm enough to support her. It really sucks to watch your baby get poked all day long.
I think I spent about 7 hours in her room today. This is emotionally and physically exhausting. Now I know why everyone keeps telling me the NICU is a hard hard place to be.
As soon as I walked into Chloe's room I knew something was wrong. There was a second respirator running and she had additional lines running into her little body. The nurse practitioner saw me arrive and followed me into the room. She began to explain everything that was happening and I had to work really hard to maintain enough composure to listen. The tears were already flowing.
Here's a summary of her first bad day:
- Her CO2 level was too high. Thus, the second (Jet) Respirator to help her get rid of some CO2
- Her blood was acidic. This happens with CO2 levels are too high.
- Her O2 level was too low. They raised the O2 level on her respirators to around 59% in order to keep the O2 in her body high enough. (Ideally, she would be at 21% - breathing the same air as us.)
- She stopped digesting milk so they stopped her feedings and put her back on an IV drip.
- Her white blood cells were high. They think she may have an infection.
- Her red blood cells are low. She had a new IV in her foot to give her some extra blood.
It's overwhelming to hear all these bad things at once but the nurses didn't seem too concerned. They are treating everything and the doctor said that these problems, while they hope not to see them, are common with babies as premature as Chloe. I couldn't help but think - she could die from an infection...
They do several blood draws a day and I got to put my hands over Chloe's head and legs to try and comfort her during one such draw. They have to poke her heel to make it bleed and she was pretty upset about the procedure. She has no voice because of the tubes down her throat but I could see her crying. It was that baby cry/scream where their face turns red. So painful to watch. Tears were pouring down my face as I tried to remain calm enough to support her. It really sucks to watch your baby get poked all day long.
I think I spent about 7 hours in her room today. This is emotionally and physically exhausting. Now I know why everyone keeps telling me the NICU is a hard hard place to be.
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