...how the journey to mend our son's broken heart changed our family forever...
Sunday, February 28, 2010
Good days and bad days
Yesterday started out well, with the doctors telling us during morning rounds that the plan was to extubate him later in the day. I was really excited! But, apparently, Bodie had other plans, the little stinker (these heart kids really do teach us patience). He didn't respond well to the vent weaning and his sats kept dropping, so they were trying different things, theorizing that perhaps he just was retaining too much fluid for his lungs to expand properly. He spent most of the day sleeping while they worked on getting the fluid off. Then, when Dusk got there in the afternoon, Bodie woke up but was extremely agitated and was awake enough for us to see him cry. But, since he is on the vent (which goes through his vocal cord), he wasn't making any noise. It was really heart-wrenching to see.
Then, right before we left, his heart started going into weird rythyms. In utero and before the surgery, Bodie always had a low heart rate - 100-115 or so (he comes by this genetically, as both Dusk and his father Alan have really really low resting heart rates). Post-surgery, he had been 155-160 (they didn't know why as they didn't expect the surgery to correct that problem) and then yesterday morning, he dropped back down to 110-120. They hadn't been able to explain it - but then yesterday afternoon, his rate jumped back up to 155-160 and again, they couldn't explain it. When we left, the doctor was in there and they were trying to figure out what was going on. A couple hours later, we finally got an answer - his 110-120 rate is his sinus rythym and that's driven by the atrium (the top of his heart) where he should be. But, apparently, the bottom of his heart is also trying to drive the rythym (getting the higher rythym) (our nurse says it's like a power struggle over who's in control). Although he seems to handle the alternate rythym ok (his pressures and other vitals stay stable), they don't want him in the other, funky rythym as it's just too hard on his heart. They're hopeful that either his heart is just irritable (very likely given that he had open heart surgery just a few days ago) or he was dehydrated due to them pulling too much of his fluids off. The good news is that they gave him more fluids and he has been in his sinus rythym pretty much since then (a few episodes of the funky rythym, but generally better)! Also good news as that hopefully means he won't need a pacemaker in addition to everything else going on!
Another kind of troubling thing is that his saturation levels are low (generally low 70's, sometimes dipping into the high 60's) (they like hypoplastic babies to have sats between 75 and 85). They have some theories on why his sats are low, but he doesn't seem to fall into any of them - so, it may just be his normal. Right now, they're watching to see what happens with them. The thing that's kind of tough is that he needs his sats to stay relatively stable to come off the vent (rather than de-satting everytime they try to wean him down a bit). So, we're hoping they level off.
So, that's all to say that yesterday and last night didn't go so great. It was so frustrating for me since all I want is for him to go off the vent so that I can hold him. You shouldn't have to go through so many hurdles just to hold your newborn child. :-( I would say I hit an emotional wall this morning and pretty much cried the whole way to the hospital...
But today was totally different! Thank God we had our wonderful nurse Amy again today. When we got to the hospital, I got two words out about how badly I wanted to hold him before I started crying again and she handed me the kleenex and told me I could take the side of the incubator down and just sit next to him and put my arms around him. It was amazing. I was pretty much eye level with him, and he was awake and alert (and not agitated, thank goodness), so I laid my head next to his and just talked to him for like an hour until he fell back asleep. It was exactly what I needed - to be able to connect with him like that. He was just looking at me, holding my finger, and seemed so content. The other good news is that they took out his chest tubes (I was glad about that because I know he can't have been comfortable with those in)!
So, today was definitely better. He has been weaned down on most of his meds ok, but we're still waiting on weaning him off the vent. That is our next big step, and we don't know when the eta is on that - it all depends on what his little body can handle. So please pray that his body can handle it and he can go off the vent SOON!!! Thank you so much for your continued support and prayers!
Friday, February 26, 2010
The next big hurdle is getting him off the vent, so please be praying specifically for that! We don't get to hold him or start thinking about feeding him until he is extubated, meaning he comes off the vent. We don't have a timeline for that yet, but I'm guessing maybe Sunday or Monday. Please pray it happens sooner than later - that is a HUGE hurdle for heart kids!
Thank you so much for all of your prayers and sweet emails/phone calls this week. I'm trying to respond back to them all - I'm getting there. :-) Please keep those prayers coming!
Thursday, February 25, 2010
A little better...
The next few days will be spent very slowly weaning him down off his meds, so we could really use your prayers for Bodie, that his little body tolerates the weaning and he gets used to his new altered physiology. That is really our next big hurdle - once that's done, we can start looking forward to holding and feeding him! Pray also for rest for Dusk, my mom and myself, as the constant driving back and forth to the hospital is starting to take a bit of a toll on all of us.
Rough time closing our little guy's chest
The not so good news is that it didn't go quite as smoothly as we had hoped. He took a dip right after they closed him (his blood pressure dropped, his sats dropped etc.) :-( Our poor guy. So, they put him back on everything they had weaned him off of (the paralytic, the epi, the nitric and the pacemaker) and he seems to be slowly doing better. Our nurse said it's not unusual to have this kind of complication and that something they're doing should help him through the transition. She also said she thinks he's dehydrated and is really hopeful that increasing his blood volume via infusion will help considerably. So he got a blood transfusion as well - and it was a directed donation - which means it was donated by one of our faithful and generous friends who responded to our request for blood and platelets for Bodie!!! Thank you!
So, definitely not the good news we were hoping for (it's so true that having a heart child is two steps forward one step back), but at least they got his chest closed and we're trying to focus on that and remain grateful for that step. Since this is so similar to what happened to Bodie after the surgery, we're hoping it's just how the poor kid's body responds to major changes like this. But we're of course really worried about him - so please send up some extra prayers for him today!
I will update once we know more...
Another good day for Bodie!
They're planning to close his chest tomorrow (Thursday), which puts us one step closer to holding him again! YAY!!!!! (they won't let us hold him when his chest is open, as it's too dangerous with his little sternum exposed like that) Then, they start looking at weaning the drugs and slowly weaning him off the ventilator. We don't know how long the process will take - it really differs from kid to kid. So, we just watch and wait and pray - and hope his little body responds well to the weaning process!
So, we don't know yet truly how well he's doing (since the machines and meds are doing most everything for him, allowing his little body to rest and recover), but what we do know is that, for where he's at in the process, he appears to be doing very well. His little body is responding well to each thing they're doing and he's been stable other than the first 12 hours or so. We're past the 48 hour mark, so out of the most critical stage! Now, we're onto the next stage - waiting to see how he does. So, please keep the prayers coming and I'll update once we know more (and yes, as many of you have suspected, no updates generally are a good thing - it means things are stable and Bodie just continue to progress)!
Tuesday, February 23, 2010
Our brave fighter
While we were there, one of the head cardiologists stopped by to talk to us and also seemed really happy with Bodie's progress. He said that on a scale of 1-10 (10 being the worst that kids come out of the Norwood surgery), he'd put Bodie at about a 4, so definitely better than average! (Our nurse piped in that she didn't even think Bodie would be that high if it weren't for his low sats!) We also had an opportunity to talk to him at length about all of our questions and it was a really helpful discussion - our timing was perfect.
All in all, today went great and Bodie continues to be stable. Please continue to pray for him over the next few days. We have crossed the 24 hour mark since the surgery and that's a big hurdle. Tonight and tomorrow they'll work on reducing his fluids (he's pretty puffy at the moment) and then, if all goes well, they'll close his chest Thursday and then the real test comes - they'll start lowering the meds he's on and see how his little body responds. So, he definitely needs your continued prayer!
Thank you all for your kind thoughts and prayers as you've walked this journey of faith alongside us. It has meant more to us than you know that so many of you have offered to help us and have told us that you're praying for us - it has given us such peace. We are so hopeful that God will continue to heal our little miracle boy over the the days and weeks ahead.
As of this morning, things were looking good and they removed the external pacemaker - the nurse told me he has a nice rythym! I think they're going to try to reduce some of his fluids today and then we have at least another day before they start thinking about taking him out of sedation and closing things. So, he's definitely not out of the woods yet (still very much in a critical state) and we have a long road ahead of us, but at least we're making progress, if slowly. Please continue to pray for our little guy's body and that it can heal as much as possible over the next few days!!! Thank you so much for your continued prayers for our little fighter!!!
Monday, February 22, 2010
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Out of surgery...and into the critical phase
(having some difficulty with the site, so have to copy paste the link into your browser - sorry!)
Bodie is stable!
- Dusk and Amy
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Sent from my Verizon Wireless BlackBerry
No update, but a thank you
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And so it begins...
Prep should take about 1 and 1/2 hours, the actual surgery about 45 min and then another hour and a half or so to stabilize and close him. So, we probably won't have an update for a while.
Please, please, please pray!
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Sunday, February 21, 2010
Prayers for Bodie
In related news, Dusk got to see Bodie today for the first time since he was born (since he's been sick, he wasn't allowed in the NICU)!!! It was so amazing to see the look in Dusk's eyes when he locked in on his son. :-) We both got to hold Bodie, too, which was an incredible experience. I got to hold him for a while and he just slept in my arms. It was beautiful. Then, the nurse tried to give him to Dusk a little later and Dusk did get to hold him, but only momentarily, since he got super fussy. According to the nurses, Bodie is a fussy little bug. We're hoping it's just because the poor kid hasn't eaten his entire life thus far - and not a reflection on his personality. :)
Here are a few pics of our special day with Bodie today:
Saturday, February 20, 2010
Bodie rides in style
The transport team from CHLA is, in a word, amazing. My mom said they looked like the Navy Seals, and she was totally right - I was in awe of the way they works and how wonderfully they handled Bodie. The best part was that when I mentioned I hadn't held him yet, they stopped what they were doing, looked at me for a second and said "we'll change that today." So, once he was ready to go, they swaddled him and let me hold him!!!! I was in tears - I couldn't believe it! Here are some pics...(and, btw, his hair is SO blonde - I didn't know until today since I hadn't seen the back of his head yet)...
Mommy holds Bodie
Update on the Bodie-man
Bodie is doing great and holding his own, which we're thrilled about. They initially had a hard time getting a central line which was a huge concern, but finally got one in successfully Wednesday night, thank God! Right before inserting the line, they sedated Bodie and he ended up de-satting (his oxygyn saturation level dropped), bradying (his heart rate dropped) and having an apnic episode (he stopped breathing), all as a result of the sedation. I was there when it happened and even though I knew it couldn't be as serious as it felt since the doctors weren't completely freaking out, they were aggressively trying to get him back breathing and what-not and it was pretty traumatic for me. Lucikly, he has not had any episodes since then and the doctors have assured me that those are common reactions both to the medication he's on and sedation.
Due to the his condition and the fact that they are drawing blood every 6 hours or so, he became anemic and needed a blood tranfusion yesterday and will have another one this morning. He did great with the one yesterday and they don't expect problems with the one this morning - he's really cute and pink now! It's neat to see!
All of his tests so far have come back completely normal, including the brain scan! Praise God for that! His echos are showing that he's stable and that his PDA is staying nice, big and open (which means the medication is doing exactly what they want it to), so we're thrilled about that. One doctor, after looking at his chart, said "he's the perfect candidate for the surgery!" (made a mama's heart sing, that's for sure). They're doing a renal scan this morning, but since his urine output has been great, they don't expect to see any surprises. His genetic test results have not come back yet, but the neonatologist told me that with boys who are born with HLHS, if there is no visual indication of a chromosomal abnormality, a genetic caryotyping isn't even the protocol since it's so unlikely that anything chromosomal is going on. Again, PRAISE GOD!!!
I have gotten SO MUCH more time with him, it's been amazing. Although I haven't been able to hold him yet (they don't want to risk disturbing any of his lines), they've really increased my access to him, allowing me to sit and stroke his head and basically any part of his body not covered by a line or tube! His nurse yesterday let me help change his diaper and taked his temperature twice, which was so wonderful! Oh, and I got to see his eyes yesterday! Usually the little guy is sleeping, so I hadn't seen them yet. But when I went in yesterday morning and pulled the blanket on the top of the incubator back, he was staring right up at me! I don't know who was more surprised - me, to see his eyes, or him, since I'm sure he had no idea who I was! It was so neat...hard to tell what color his eyes are, but his hair is definitely strawberry blonde-ish...and yes, he looks Sierra! I can't wait to get home and compare baby pics of the two of them.
Speaking of which, I'm getting released today (I stayed until the insurance company kicked me out!). I'm sad to leave Bodie since we don't know yet whether he'll be transferred today or tomorrow. But it will be nice to spend some time with Sierra today and tomorrow - and sleep in my own bed for a couple of nights before we head over to Children's for an indeterminate amount of time.
Please pray for Bodie as we head into the weekend and into next week. This week has been surprisingly smooth and easy (all because of the amazing prayer warriors we have hard at work praying for him, I know), but we are preparing ourselves for a really difficult week next week. Please just pray for our little fighter - pray for his little body, that he responds well to the surgery and pray for the surgeons, that they have the wisdom to do the best job they can. And pray for Dusk and I, that we can stay calm and just trust God with our beautiful little boy next week. :-)
I will update as soon as we know more (including when he gets transferred). In the meantime, thank you for all of your kind thoughts, prayers, blood and platelet donations (we've been totally overwhelmed by your response to our request for help with that!!!)! Asnd here are a few new pics of our little fighter...
Thursday, February 18, 2010
Amazing video introducing Bodie...
Wednesday, February 17, 2010
Blood and Platelet Donations for Bodie Bennett
Bodie needs at least 6 more donors for both blood and platelets.
Blood: Because Bodie is A+, he is compatible with the four most common blood types (A+, A-, O+, O-). You can donate blood if you are either A or O.
Platelets:There is an urgent need for people to donate platelets in addition to blood. ANY BLOOD TYPE CAN DONATE PLATELETS.
Platelets will be an important part of Bodie's surgery. Platelets will help control the loss of blood which will ensure the surgery will go smoothly. The difference between giving blood and giving blood along with platelets is time. The whole process should take 1-2 hours.
Criteria for Donors: Weigh more than 110lbs, have not left the country in the past year, did not have any tatoos or body piercings in the past year and some medications could disqualify a donor as well. For platelets it is important to avoid any kind of aspirins. Donors can not take pain relievers 48 hours before giving blood. No antibiotics 72 hours before giving blood. Call George, the contact person, to ask whether or not you would be a qualified donor.
Little Bodie's surgery is Monday and people can give blood up to Saturday. They just need to call George to schedule it.
Blood donation contact number: 323-361-2370
Contact person: George
First 24 hours down...
Bodie is stable, but they've had difficulty getting a central line in him (apparently, it's not an uncommon problem with newborns). They've managed to get 2 iv's in his hands, but they're just not as stable as a central line. They've tried a couple of times unsuccessfully, and don't want to risk trying again. So the next step is to bring in a surgeon and surgically put a permanent line in. It sounds like that's our best option - I think they're planning to try that tonight. Also, the meds he is on can cause problems breathing, so we expect him to have to be intubated at some point before he's transferred to CHLA. They did a scan of his head last night and it showed NO abnormalities! Praise God! (things could still come up, but it's definitely a good sign that nothing has shown up yet!!!)
I'm doing well - recovery from a c-section is definitely a different ballgame than recovery from a vaginal delivery, but I'm already up and around walking, albeit slowly - pain meds are wonderful! I haven't seen Sierra yet, but I hear from my mom and dad that she's really excited to have a baby brother! Since Dusk is sick, he can't be in the NICU any longer, so he went back home to be with Sierra and my mom is at the hospital with me.
Please continue to pray hard for Bodie - he has a tough battle ahead of him and will need all the love and prayers he can get to make it through!!!
Tuesday, February 16, 2010
Bodie Isaac Bennett
Welcome to the world, our little fighter...
Bodie...a small mining town in the Eastern Sierra Nevadas - shows our love for the mountains and matches his big sister's name Sierra perfectly.
Isaac - in the Bible, God asked Abraham to sacrifice his only, long awaited for, son. Abraham willingly did so, and God rescued Isaac at the last minute and rewarded Abraham for his faithfulness. We chose this name as a constant reminder that our children are not ours, but a gift from God, to be consecrated to Him and to His purposes.
May Bodie Isaac glorify God through his life.
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Monday, February 15, 2010
The calm before the storm
Dusk had to work part-day today, so Sierra and I relaxed and cuddled all morning - I even painted her toenails (she'd been begging me for a while, but you know how it is - life just gets in the way sometimes). The weather is absolutely incredible today (crazy for mid-February), so we all got to eat lunch outside in the backyard, listening to the fountain gurgle and watching hummingbirds fly. It was pretty amazing. Then, we napped together. Once Sierra is up, my mom should be here and we're all going to Sierra's favorite park and then going out for dinner tonight. (We're actually going to the same place we went to the night before I was induced with Sierra, so apparently, it's becoming a family tradition!)
It's been so nice today to just relax and not worry about tomorrow. We're at such a place of peace, and we know it's because of all of your prayers. (Believe me, given what we're about to go through, the fact that I'm sick, Dusk has now caught the cold from me and my back is almost completely thrown out, there can be no other explanation for this peace other than prayer! :-)). So thank you, thank you, thank you for the prayers - please continue to keep them coming as we head into tomorrow. Pray for Baby - pray for a miracle, pray for baby to be as healthy as possible; pray for the doctors - that the c-section goes smoothly and everyone who needs to be there can get there; pray for Dusk and I - that we just glorify God in whatever this whole journey will bring.
The c-section is scheduled for 2:30, so I'll update to the blog as soon as I can after baby has arrived (with Sierra, I didn't get to hold her for the first 5-10min, so since I didn't have anything to do, I literally was texting while they were sewing me up, but my guess would be they won't let me do that in an OR after a c-section, so there will probably be a delay of some sort). My mom and dad will both be at the hospital, so I'll probably ask them to update once we know anything!
Thanks again and we'll see you all on the other side! :-)
- Dusk, Amy & Sierra
Sunday, February 14, 2010
How can I help?
Our dear friend Natalie (from church) has offered to set up a dinner rotation, so I know we'll be taking advantage of that at some point. My guess would be that it will be sometime after the baby's surgery - maybe the week after. It will largely depend on whether I am able to leave the hospital to come have dinner with my mom, Dusk and Sierra or not. If you live locally, but do not attend our church and would like to help out with meals, we welcome the help! I'll post Natalie's contact info on the blog once we get closer to the rotation and you can totally help out!
In the meantime, there are really only 2 things we need: your prayers - and your blood.
PRAYERS: Please continue to pray for a miracle for baby and health and peace for Dusk and I this week. I have come down with a pretty bad head cold, so that is complicating things a bit. I called both the OB and cardiologist on call today and have been cleared by both of them to continue with the c-section as planned on Tuesday. But I sure would love to be past this cold by then as it will undoubtably make my c-section recovery easier if I'm not also fighting a cold at the same time; not to mention that they likely won't let me into either the NICU or PCICU to spend time with baby if I'm coughing or showing signs of illness. (Thankfully, there doesn't seem to be much concern with baby catching it from me - just the inconvenience of me not being allowed into the NICU.)
BLOOD: CHLA does allow directed blood donations for patients, so if any of you are interested, we'd love to have you donate blood for baby. (I am not eligible for donation, being in c-section recovery - and Dusk is likely also ineligible due to medications for his heart condition, so we're looking to other close friends and family members to help us out.) If you are interested, donations have to be made to CHLA between 2/16 and 2/18 (so that there's enough time to test and clean it) and you need to know baby's name and DOB to donate (so, you have to wait until after baby is born). The blood donation center at CHLA is open Tues-Thurs, 8am-4:30pm and you can call 323-361-2441 to set up an appointment. If you are interested in donating blood, please email me and I'll make sure you're on the email list of people who need to know baby's blood type as soon as we know it. Thank you in advance!
Thank you so much for all of your help and prayers - we're so blessed by all of you and so appreciate all of your love and support as we're about to embark on this scary journey!
Friday, February 12, 2010
A week of lasts
On Wednesday, I had my last perinatologist appointment and all looked good. One of the things they really worry about with heart babies in general is growth restrictions, but baby is growing right on target! The doctor was really pleased with baby's growth and seemed genuinely surprised we had made it to full term. He actually said he was really impressed and that I did a good job. :-) We all know I didn't really have anything to do with it, but it was nice to hear him say it! He estimated baby's size on Wednesday to be around 7lb 2oz, which made him really happy. I told him I was hoping for a bigger baby, but he said where baby is at is optimal for surgery and that I should be happy as well. So, baby staying in a bit longer at this point is just gravy to get baby bigger!
Then, on Thursday, I had my last OB appointment and non-stress test. The nurses were laughing because the baby's heartrate was its usual super low 95-105 most of the time, until they came in and started talking about the surgery - as soon as the word "surgery" was mentioned, the baby's heart rate shot to 140! It was really funny. The doctor checked me and said my cervix is soft, but still closed, so that was a relief. I've been having A LOT of contractions (they were so bad Tuesday night, I thought we were going to have a trip to Labor & Delivery), but apparently they're not doing too much. Since Sierra didn't want to come out either, I can only assume I have a really nice, warm, comfy uterus!
Then, I had an interview with a pediatrician last night and that went well. Unfortunately, we can't use Sierra's pediatrician as much as we'd love to (we LOVE her), because we'll need baby to be routed to CHLA in the event of an emergency, and Sierra's pediatrician is in the Torrance/Long Beach Children's Hospital network. So, we had to find a new pediatrician for this baby that will allow us to continue seeing the cardiologist I've been seeing my whole pregnancy - and put is in the CHLA network. I really liked the one I met last night- and she has another HLHS patient (a 1 year old little girl) and other CHD patients, so I feel like we'll be in good hands!
Yesterday was my last day of work and it's so weird to be out of work now! I was running around like mad yesterday trying to get my office cleaned out for our temporary CFO to cover for me while I'm on maternity leave. My work was so great about being flexible - and I'm excited I was able to work all the way up until my due date!!!
So now, we're just trying to relax and get last minute stuff done between now and Tuesday when baby Bennett makes his or her arrival! Please keep praying for Baby!
Sunday, February 7, 2010
A view from the outside
Thursday, February 4, 2010
Holding patterns and prayer circles
Thank you so much to everyone who has been praying for us. We have really felt it. The elders at our church came to our Home Fellowship this week and prayed over us. It was an awesome time of prayer and fellowship and we just felt so comforted to know that we're following the example set in James 5:14 "Are any among you sick? They should call for the elders of the church and have them pray over them, annointing them with oil in the name of the Lord. The prayer of the faith will save the sick..." (Please keep in mind that we do not subscribe to the "name it and claim it" doctrine so to speak, but we do rejoice that we worship a God that asks us to bring our petitions before Him in full faith that He will answer them.) We are so grateful to be a part of such a faithful community who has come alongside us to pray for a miracle for our Baby. Please continue to pray!
Speaking of prayer, I have an update on sweet little Nathaniel! As I posted, his surgery was Thurs., the 28th. Well, Tues, Feb 2nd, he came home, after just over5 days in the hospital! What an amazing recovery he has had - keep in mind that he had open heart surgery and is home already! Praise God! He has some tough recovery ahead of him, but by all accounts is doing great! It is so inspiring to us to see his story unfold and to know that he is now PAST all 3 of the planned surgeries our baby will go through. Thank you so much for praying for him and please continue to pray for him as he fully recovers.