feeds are the name of the game

Brooklyn had a good day overall. She was happy all day other than when I put her back down in her bed after holding her for a while. She held quite the protest each time that happened. :) Her pain level has been much better and manageable with minimal pain meds. Progress! I worked with the nutritionist to start a new feeding plan today. That hasn't gone so well. We were moving toward more of a schedule instead of a continuous feed, about which we are thrilled. This means more and more bottle feeding and a schedule as opposed to Brooklyn being tethered to the feeding pump pole around the clock. Great in theory. But it seems that her little tummy isn't quite ready for higher volume over a shorter period of time. We had three feeds this afternoon/evening and three high-volume spit-ups. Doggone it! We have high hopes of moving toward scheduled feeds as this means more normalcy, but, as usual, we're taking Brooklyn's cues as to whether or not she's ready for that plan. So far, she doesn't quite seem to be. So I'll be running another plan by the nutritionist in the morning to confirm my proposed plan B. For now, we're back to a continuous feed overnight and hoping tomorrow is as good as today overall. If so, we're getting closer and closer to going home! And this sweet baby just keeping getting cuter and cuter... :) We'd love prayer for Brooklyn's tummy to handle the bolus feeds the schedule!

She was happy enough to given me lots of sweet grins and coos this afternoon... :)

a good day, a hard night...again

Brooklyn had a good day yesterday. She was happy most of the day. She smiled at everyone who came to her bedside, including her Nana and Papaw and her two big sisters, who were super excited to see her. So, so sweet. She even played in the swing happily for a brief time and took her first post-op bottle like a champ. So fun to watch her enjoy some things that she normally does at home. 

Then night time rolled around. She was inconsolable at times between 7:30 p.m. Saturday to 2:00 a.m. this morning. Poor baby. She was miserable. After rounds this morning, we talked to the cardiologists about her day yesterday and what approach might be best to help her. They indicated that this type of irritability (usually due to headaches) is not all that uncommon post-Glenn. However, we should start to see a decrease in irritability not an increase. They decided to increase her diuretic as there's a good chance some increased fluid retention is causing her headaches to worsen. They are also administering the heavier pain meds again regularly around the clock. 

Today has been much better. She has rested a lot off and on throughout the day and has even had a couple of good awake periods. Thankfully, during those awake times, she has seemed much more like the Brooklyn we know and love. So happy with the relief she's had and the improvement from last night. Now, if we could just stay on this track!

Oh, and she turned five months old yesterday!! :) So hard to believe our beautiful, amazing baby girl is five months old already. 

enjoying her big big sis

first bottle post-op...she loved it!

eyes for Daddy

 an attempt at a family photo...classic :)

happy baby earlier this evening...yay!!!

some evening snuggles with Mama

she graduated!

Well, it's been a busy day, and I'm exhausted. Like fall-asleep-standing-up exhausted. So, I'm going to keep this one short. The best news of the day is...Brooklyn graduated to "the floor." So, as of early this (Friday) afternoon, she's out of intensive care. Woohoo! She actually had a rough night Thursday night with vomiting a few times and a hard day Friday. Irritable off and on all day. Didn't really nap well until 6:00, so we're hoping she's in the for the night. And she vomited five times in 24 hours. Think high-volume, heaving spit-up. Poor baby. We get one, maybe two, of those at home everyday, but not five! So, they're keeping her on some meds to help her tummy. We switched to the formula we use at home (from what the hospital provides) this morning. That seems to have already made a difference in the number of spit-ups we've had since.

Also, you guys must've prayed for pee as I mentioned last night because her fluid balance is much better as of this afternoon. Praise Jesus! Thank you! :) 

This morning before we left the CICU, Brooklyn was part of a video/photo shoot for the new St. Louis Children's Hospital ad campaign called "Inspired by Kids." The director of the Heart Center contacted me last week to ask if Brooklyn could be part of the ad campaign. So, today was the shoot. In a couple of months, she'll be part of a commercial montage and such. So fun! Thankfully she was in great spirits when they came for the shoot. And, look, she has her mommy's (and Nana's) dimple! I love it! :)

And in other news, our big girls arrived today with my parents for the weekend. SO good to see them and hang out this evening. They've already gotten some pool time in at the hotel, and they can't wait to love on their baby sis tomorrow. 

That's all for now. Hopefully this post makes sense in the morning when I read it again. Who knows. I only dozed off half a dozen times while I was writing it. And so much for keeping it short. Ha! :) No one ever accused me of being short-winded. ;)

another day of progress

Brooke had another good day of progress! Chest tubes, pacer wires and atrial wires came out this morning. Man, she is one tough kid. I held her hand and kissed her head while they took all of that out. While she did fuss at the chest tubes being pulled, I'm pretty sure I wouldn't have handled all of it nearly as well as she did. The nasal cannula came out this afternoon, too. She's off most of the heavy meds. She's met her goal on the continuous feed. She's been awake a lot more. We even got some good smiles out of her this evening. And the best news of the day...we both got to hold her for awhile! 

We are on a good road! The main concern at this point is her fluid retention. They'd like for her to get rid of quite a bit more. So, pray for pee! :) We will also be working toward a new feeding plan tomorrow. We are anxious to get rid of the NG tube, but we want to be sure to find a plan that works well for Brooke, working in more bottle feeding, causing minimal spit-up and resulting in continued weight gain.

before and after the chest tubes and wires were pulled this morning

snuggles with Daddy

profusion scan to look at blood flow to her lungs

 snuggles with Mommy

smiles for her favorite guy

a priceless grin

what a difference a day makes

Wow. What a difference. We have seen God's mighty hand at work again, you guys. What could have been a long 24-48 hours of irritability and discomfort for Brooklyn with the post-op headaches only lasted about eight! And that was plenty long enough to hear her constantly whimper and whine. Poor baby. 

Today has been a really good day for Brooke. Still plenty of progress to make, but she is moving in the right direction. She has been much more alert as the day progressed--making eye contact when we talk to her, watching us and kicking like crazy. Her morphine doses have dropped dramatically today, and she is gradually working up to "full" feeds through the NG tube by tomorrow morning. Thank you once again for the steadfast prayer! Praying for a better night's sleep for all of us.

rest for the weary

Brooklyn had a pretty good night after about midnight. The nurse started pushing her morphine doses over an hour which seemed to keep her much more comfortable. Still some faint whimpering most of the night (so pitiful), but she seemed to at least be able to rest other than for a 45-minute period when they came in for a chest x-Ray at 4:30 a.m. And she has been resting all morning even more comfortably. She's been awake a little more this morning, making eye contact with us when we talk to her, and she seems to sleep well overall. We've had to wrap her up to pin her arms down so that she doesn't pull out her nasal cannula. She's a feisty one, this Brooklyn Hope. :) 

Our plan for the day includes slowly decreasing her sedative, administering some doses of a strong ibuprofen for pain management and starting feeds. Brooke took her paci for me for the first time a couple of hours ago and then an ounce of Pedialyte by bottle. Yay! She wanted more, but she was working very hard, so I cut it off...and then she was OUT. It's all about rest, rest, rest right now and keeping her comfortable so that she can rest. Oh, and her blood pressure has stayed in a good place throughout today as well. Likely evidence of being more comfortable overall.

As for Mom and Dad, rest will come soon enough. :) We took turns sleeping last night and both managed a few hours between the parent lounge and the chair in her room. We expect tonight, and each night thereafter, to be better...for all three of us.

Thanks again for praying, you guys. Keep it up! We are seeing the results!

a good day, a hard night

WARNING: (Somewhat) graphic photos that may not be suitable for your kiddos.

If you've been following our Facebook page, you know that surgery went well today. In the surgeon's words, "as well as [he] could've hoped." We received updates every hour from the OR regarding the progress of the procedure. All-in-all, surgery was a success. No more shunt. Second stage of reconstruction complete. The only "wild card" was what they might do with Brooke's left pulmonary artery which showed some narrowing during the cath she had earlier in the month. Our surgeon decided to go ahead and add some patch material to that artery to remedy the narrowing and allow it to grow well with Brooke. That part of the procedure also went well. 

We finally got to see our sweet babe around 3:15 this afternoon. She came up to the Cardiac ICU (CICU) with the breathing tube still in, but the doctors wanted to get it out as soon as possible. So, while we were in the room, one of the doctors suctioned her mouth to stimulate her and try to wake her up a little. It worked. And it ticked her off. :) But it did show us that she was ready for that breathing tube to come out...so out it came! Also, unlike last time, she came back with her chest closed today. Still all the tubes and wires, but no open chest. She actually looks really good. She's a little puffy, but we expected that. Also, the doctors have been fairly pleased with her numbers overall other than her blood pressure being a bit high. They're trying to find the right balance of keeping her comfortable with minimal pain and not so comfortable that she doesn't want to breath on her own. 

Honestly, the afternoon and evening have been extremely difficult...for Brooklyn, for John and for me. She's been in a lot of pain, presumably as a result of the headaches caused by this particular procedure. The specific work they do on her heart with the Glenn procedure increases the pressure in her chest and head causing severe headaches. We were aware of this going into today, but nothing could have really prepared us for this. She has whimpered/cried non-stop since she came up to the CICU. It's just pitiful. And unbelievably difficult. John and I had been taking turns about every hour sitting at her bedside holding her little hand. Stroking her forehead. Talking to her. Praying over her. Doing everything we can to let her know we're right beside her. We decided to take longer shifts tonight so that one of us can sleep in the parent lounge and the other can stay at Brooke's bedside. We seriously could not make it through this without God sustaining us. He is our strength and our shield. Holding on to this promise a dear friend reminded me of today... "He gives strength to the weary and increases the power of the weak." -Isaiah 40:29 He sure does! Praise Him!

Here's a glimpse of what our first couple of hours post-op were like...

So, praises and prayer requests...

• praise that surgery went remarkably well
• praise for the continued excellent care we have here in St. Louis
• praise for YOU...all those who love and support us :)
• praise that my mom and dad are caring for our two big girls while we're here focused on Brooklyn (a huge blessing that eases our minds!)
• pray that Brooklyn's headaches subside immediately and that her pain level decreases
• pray that her blood pressure comes down (an affect of being in such pain)
• pray that the doctors find the right combination of meds to keep Brooklyn comfortable
• pray for amazing sleep when John and I have our turn in the parent lounge

Thank you again, friends and family for covering us in prayer, thinking of us and loving us. We are overwhelmed by all of the support from those who know us intimately to those who don't know us at all, and everyone in between. We are SO grateful for you!

surgery early tomorrow

A tiring, six-hour day of pre-op appointments is behind us. Meeting with the surgeon. EKG. Lab work. X-ray. Meeting with anesthesiology. And this girl took it like a champ, making friends everywhere we went. We are ready to go for surgery early tomorrow morning. As of right now, we are first on the schedule and have to be there at 6:30 a.m. Brooklyn should be heading in to surgery by 7:45 a.m. or so. This is the second of the three-stage reconstruction of her heart. She had her first surgery, the Norwood procedure, back in early November when she was just six days old. The open-heart surgery she will undergo tomorrow is known as the bi-directional Glenn procedure. (Click the links for short video explanations of each.) The surgeon said the surgery should take about 5-6 hours. I plan to post updates along with specific prayer requests on our Facebook page throughout the day tomorrow. 

For now, the three of us are enjoying hanging out at the hotel, relaxing before the big day tomorrow. 

chatting with Mommy (last night)

being cute just a bit ago :)

Oh, and just after I took the picture above, she rolled over for the first time while playing on the hotel bed. So fun! :)

Prayer requests for now...

• Peace and good rest for us tonight
• Protection over Brooklyn tomorrow
• Guidance and clarity of thinking for doctors and staff as they perform the surgery

Thanks SO much for following us on our journey, supporting us, encouraging us and covering us in prayer, friends and family. We appreciate you more than we can express. Hugs!

home again

Well, another quick trip to St. Louis is behind us. We enjoyed, once again, seeing some of our favorite nurses and doctors, and they loved seeing how big Brooklyn has gotten. John and I were talking while we were there about how, in a weird kind of way, we're going to miss these frequent trips to St. Louis when the follow-up becomes less intense. St. Louis feels like home to us in a sense. I guess because the team caring for Brooke has really become like family. I really do love those folks. And I love that place. 

It was good to get back home last night though and be together again as a family. Brooke still isn't quite back to herself, especially with sleeping, unfortunately. And she has the sweetest little cry that is still so hoarse from having a breathing tube during the cath. Reminds me of when she had surgery. 

At conference yesterday the surgeon's recommendation is that they will not put a stint in that narrowing LPA during the Glenn. Our cardiologist said she got to "show  off" Brooke and her great weight gain and such. :) Doc says she is ready for surgery. Now our focus is enjoying our family time the next week and a half and keeping everyone healthy. If Brooke gets so much as a cold, her surgery date could be affected. So, that's our big prayer request right now. That as well as Brooke's sleeping (which obviously affects our sleeping). :) She just seems a bit more uncomfortable and is also coughing quite a bit (presumably from the breathing tube) which initiates a lot of spitting up. Her gag reflex is so sensitive because of the NG tube. Poor baby. We can't wait to get rid of that thing!

Thanks again for thinking of us, lifting us in prayer and loving us!

cath results

Thanks for praying! All went well today with the cath. Brooklyn has been resting fairly well. Pretty fussy when she wakes, but thankfully most of the afternoon and evening has been full of good rest for her. Finally started half feeds around 5:00. 

Results of the cath... Pressures in her heart and lungs were good. Shunt looks good. No more narrowing. Some narrowing though in her left pulmonary artery (LPA) causing less blood flow/oxygen to the left lung than the right. May result in a stint being placed in the LPA when they do the Glenn (her next open heart on 3/25). Docs will discuss everything together tomorrow morning at "conference." Brooklyn and I are staying overnight in cardiac step-down for observation just as a precaution. Hoping for good rest for me and for Brooke tonight as I will be trying to sleep in her room. 

Oh, and while Brooke was in the cath lab, John, Ab and I had the opportunity to enjoy the beautiful, warm, sunny afternoon from our favorite spot in the hospital--the rooftop garden. Ab even got to learn some cool stuff about predator birds. Once again, we're blown away by this place. 

Update from the Facebook page at 11:30 a.m...
Consults with docs are done. Chest x-Ray is done. Took a little snooze a bit ago. Now snoozing in Daddy's arms. Waiting for them to come and take her back for the cath. She will be in from about 11:30-2:30. Please pray for guidance and clarity for docs and staff, for no bleeding or clotting and just overall protection over Brooke. Thank you so much!

cardiac cath tomorrow morning

After enjoying some time poolside tonight, Brooke is resting for her cardiac cath tomorrow morning. This is a diagnostic procedure to check pressures in her heart and lungs and to take a look at the heart to be sure she's ready for surgery on March 25. It should be pretty routine, but we'd appreciate your prayer, nonetheless! They told us to prepare to be admitted for one night, but that it really depends on how much they do during the cath. Thanks for lifting us in prayer once again!

great check-up

She's a chunky monkey! Well, relatively chunky. Our cardiologist was very pleased with Brooke's weight gain when she saw her on Thursday. She finally moved out of the first percentile in weight and length...and jumped to the ninth! A heavyweight! :) She weighed 11 lbs 15 oz on Thursday, and, as of her weigh-in tonight at home, we've surpassed the 12-lb mark! She's now at 12 lbs 2 oz. Right on target for my projected 12 lbs by March 1.

Her sat level was at 78 on Thursday, which was higher than it had been reading at home the few days prior. So encouraging! Heart rate, pulses and color are all good. Our speech therapist and I have been working hard to improve Brooke's bottle-feeding skills, and it's paid off! Because of her good weight gain and her progress in bottle-feeding, we are adding a third bottle each day. This means that she will be off of her continuous feed for 4.5 instead of three hours a day as long as her weight gain continues. Yay! They want to be quite proactive with getting rid of the feeding tube and her off the pump post-op (after recovery time), and we are thrilled with that! Speaking of the feeding tube, did you notice anything different about those sweet cheeks in the photo? No tube! She pulled a nice little trick Friday night and yanked it out. Thankfully, we got a new one to drop on the second try. Well, John did. I got to hold her head and hands while she kicked and screamed. Sigh. Again, we are thrilled with the idea of getting rid of that silly thing! For now, it's a great solution for her weight gain. Look forward to seeing both of those sweet cheeks all the time though!

At our check-up on Thursday, we confirmed our cardiac cath date of March 11. Also, because she's reached the benchmark of 12 lbs now--the original goal for the second surgery, the Glenn--that surgery is scheduled for March 25. That's 22 days from now. Eek! We are both nervous and excited for this date. Nervous because, well, it's another open-heart surgery for our little one. Sigh. Excited because it will mean that we've made it through the critical period between the first and second stages of reconstruction. This is a huge deal! We are by no means out of the woods, but getting to and through this second surgery will be so exciting for Brooke and for our family. If all goes according to plan, we will have much less intense follow-up after the second surgery. Which means a more "normal" (new normal) life for us, for Brooke. Also, we will be out of cold and flu season and out of that critical period between the first two surgeries so we'll be able to get out more and do normal things as a family...like run errands, go to the grocery, go for a walk, go to church. Yay! It's the little things. :) 

We'd love for you to join us in praying for the following as we move toward these critical dates...

• Good health for all five of us, especially Brooklyn. The other four of us are battling mild colds right now. Please pray that Brooke is protected and that we heal quickly.
• Better rest for Brooke and for John and me and for discernment in figuring out what's causing her recent sleep troubles. She has been extra restless the last few nights so we are extra exhausted (if that's even possible). It seems paci-related, but I'm not positive.
• Continued peace as we move toward these critical dates. We really do have a peace that only He can give, but we know the eve and day of her second surgery will be especially difficult, as was the first. 

As always, our desire is draw closer to Him through this journey, and we want others to do the same. We want to know Him more and Him to be known more. We pray you see Him in our story. He has done and is doing mighty things, folks. Be famous, Lord! 

mommy snuggles

Sunday afternoon snuggles with Mommy. Every moment is a gift.

the brooklyn burrito

I ran across this looking back through some photos from February. I've loved to swaddle each of my babies and snuggle them this way. Brooklyn has since outgrown swaddling, unfortunately, or just prefers not to be really. But when we were in the hospital back in November, I loved to swaddle her really snugly in muslin swaddle blankets. As a result, some of her nurses and techs affectionately referred to her as "The Brooklyn Burrito." So funny. Though in this photo she's swaddled in the wrap we received as a gift from the Heart Center at St. Louis Children's Hospital, it still makes me think of that endearing nickname and those sweet nurses and techs every time I look at it. And it really makes me miss swaddling my babe. How'd she get so big so fast?