headed home

Looking cute, feeling better & ready to bust out of here!

three months old

Wow! Three months already! While this isn't an ideal place to spend a three-month birthday, or any other birthday, for that matter, this little peanut is feeling much better and enjoyed some snuggles and wiggles this afternoon. She still has a nasty cough now and then, but she's had a great day. If all continues to go well through the night, after the dreaded, monthly NG tube change in the morning, we'll be on our way home!

Happy three months, sweet baby!

heading home tomorrow

Brooke had a really good night. Not much coughing at all and slept comfortably, for the most part, from 9:00 until 5:00 when she coughed, gagged and spit up. Typical Brooklyn. :) After the nurse and I got her clothes and bedding changed, and snuggled her a bit and then put her back in bed to sleep another few hours until the nursing students came in to do their thing around 8:30 and woke her up. I enjoyed watching her interaction with them. She really took it all in, flashed some smiles, wiggled. Pretty cute. She even gave them all a good startle when she vomited just as one of them was administering her meds. It was actually kind of funny because they all kind of jumped in panic for just a second. I assured them it was typical Brooklyn. Good learning experience for them, I suppose. :)

Anyway, a really good night and good morning today. Also, doc said her numbers looked good all night as well. No consistent drop in sat level like the night before. Just good rest and typical spit up. 

We had lots of folks in and out this morning as usual, so she was awake all morning other than a little snooze in my arms. Loved it. :) She's been napping for about an hour and hopefully will sleep quite a bit more as long as it stays quiet in here. Doctors were comfortable letting us go home today but gave me the option to stay a bit longer if I was more comfortable with that. As I told them, if we lived in St. Louis, I'd say, let's go home now! But the three-hour distance makes it a tougher choice. I've opted to stay here another night with her just to be sure we're past the worst of it. As long as things look good overnight and she continues to improve, we will leave as soon as John gets here tomorrow morning. Woohoo!

Thank you SO very much for all the prayer support and encouraging messages. God has once again done amazing things in and through Brooklyn! So grateful. 

an impromptu road trip

I'm usually a fan of spontaneous road trips. This one? Not so much. We're back in St. Louis a little earlier than we'd planned, unfortunately. Brooke came down with what seemed to be a cold. Turns out it's a type of respiratory flu that could lead to pneumonia if it worsens. 

She started with sneezing and coughing yesterday. After speaking with our cardiologist's office yesterday afternoon, we agreed to wait it out and keep an eye on her sat level and breathing overnight. She ended up having a really rough night of coughing spells. Sat level hovered in the low 70s and even dropped below 70 several times. Her baseline is 80. After a really long night with her coughing and restlessness, we decided to call in again early this morning to get some feedback on what to do. They requested that we head on down, come in to the ER  (as is procedure) and plan to be admitted. They even offered transport, but we felt like we were fine to drive the three hours. We had an uneventful trip down and checked into the ER around 12:30. Though Brooke looked pretty good in the ER, as did her numbers, the decision was made to admit her as a precaution so they can observe her sat level and breathing, especially since her condition could get worse before it gets better. They did a chest x-ray and nasal swab. Chest x-ray looked good. Nasal swab confirmed flu. Doggone it! 

We've tried SO hard to limit her exposure to anything by not taking her anywhere other than doctor visits and having very limited traffic into our home...and always making sure folks have been healthy. We are adamant about our girls not being in her face, covering their mouths/noses when they cough and sneeze, changing clothes as soon as we come home from school/work/doctor visits, washing our hands ALL the time... But, our fragile little one still got sick. :( And it landed her in the hospital. Poor baby. I have to say though, as much as I didn't want to end up here until we come for her pre-op cath sometime in the coming weeks just before her next surgery, I had such a sense of relief when we walked through the door. This place that feels a bit like home. I suppose it's relief that we're here where our babe can receive the attention and care her special little heart needs. And it feels a bit like home because these folks love our Brooklyn Hope. Inevitably, there are at least a handful of doctors, nurses, support staff and even housekeeping folks, who seek us out and want to check to see how our babe is doing and how she's grown. I love that. I love these folks. 

We'd love for you to pray for us tonight. Four out of the five of us have been battling respiratory stuff. Yuck! Emily has been the worst and then Brooke. Please pray for quick healing for all of us and that our stay in St. Louis will be productive, uneventful and brief! Brooke will have an echo in the morning, and they will continue to monitor her sat level for the duration of our stay. So far, she has been resting comfortably without much coughing for most of the time we've been here, and her numbers look good. If her sat level drops again throughout the night though, they may have to put her on oxygen to give her some relief and help her breathing. I'm trusting that they won't! :)

I will try to post an update sometime tomorrow midday as time allows. Once the day gets rolling around here at 7:00 a.m. or so, things can get pretty crazy with a steady flow of folks in and out. Thanks for praying! :)

another good check-up

We had another good check-up with Brooke on the 16th. Sorry it's taken so long to update you on it! We had multiple birthday celebrations (for the same birthday :)) and parent/grandparent visits right around that time, so it's been extra crazy (and fun!) around here. Can't believe this girl is 7! She is a sweet, book-loving, kind, cartwheel-turning, compassionate, sister-loving, thoughtful, hand-standing, bright, Jesus-seeking, forgiving, ballet-dancing, beautiful-inside-and-out, amazing little girl, and I absolutely love being her mommy. What joy she brings our family! And what great care she takes of both of her sisters. She's quite proud (and protective) in the photo below because she just put Brooklyn to sleep. :)

Brooke's numbers looked good at the check-up. From the first read, we had concern that her oxygen saturation number was pretty low (for her), so we took some extra time hooked up to a monitor to be sure she was at a good place. When I check her at home each day on the pulse oximeter, her heart rate is typically around 150, and her sat level sits around 80 (ideal range is 75-85% for her...closer to or at 100% for healthy babies). So, those numbers ultimately looked good, and she'd had good, consistent weight gain at about and ounce per day. She continues to gain about an ounce per day...and we hit 10 lbs this weekend! Woohoo! She's still a peanut, but her consistent weight gain is so encouraging. We'd like it to be even better in hopes that she will hit 12 lbs by the time she has her next surgery. 

Speaking of her next surgery... The doctor also wanted an EKG and echo done while we were there on the 16th, as Brooke had been extremely irritable for the few days leading up to our appointment. We assumed it was due to having her two-month vaccinations that Monday, 1/13. Turns out we were likely right. We were very glad to have the EKG and echo done though. The EKG looked good. The echo showed that the BT shunt that was placed in Brooke's heart is starting to narrow on one end. This is expected to happen. We've known from the beginning that as she grows, she will outgrow the shunt. They will continue to keep a close eye on the shunt at each bi-weekly check-up, presumably with an echo each time. The doctor indicated that the shunt should narrow slowly over time. We'll also be keeping a closer eye on her sat level at home. I check it a few times a day (instead of just once) now and also when she seems to be more irritable. She is consistently around 79-80. Huge praise! As the doctor said, we want her to gain weight faster than her sat level declines. This decline will inevitably happen in the coming weeks as she continues to outgrow the shunt. We got the impression that, based on the echo results, Brooke's second open heart surgery may come sooner (in March possibly) rather than later (in April as we first guesstimated) now. Time, and numbers, will tell.

She continues to take the bottle very well and seems to really enjoy it. We've had the pleasure of working with a fantastic speech therapist for bottle feeding in the last few weeks, and we feel like we're at a good place with a new technique for feeding. We would love to get Brooke on more of a feeding schedule, but with her good weight gain, we don't want to make too many changes or push any unnecessary change. She's still spitting up quite a bit, so we're trying to determine if our switch in formula brands or her continuous feed rate is affecting this. Ultimately, though the continuous feed 21 out of the 24 hours a day is a bit cumbersome sometimes (because she's "tied to" the feeding pump), we're making it work because it's what's good for Brooke...it's putting on the ounces!

So, there's the medical update. In the midst of all of the appointments and tests and feeding changes and monitoring, we're starting to finally really enjoy our little heart warrior. As I was telling our nurse practitioner recently, we've been so concerned about her health and caring for those intense needs, I had nearly forgotten the fun milestones we would typically begin to see...like smiling, holding her head up well, moving more, tracking movement with her eyes, finding her hands and fingers, making more noise, etc. Her personality is really starting to show, and it's been such a delight to stop and really notice all of these little milestones Brooke is hitting these days. So much fun!!

We have another check-up in St. Louis this Thursday. We are anxious to see how the shunt looks and when they anticipate her next surgery will take place.

Thanks for continuing to pray for and support us! You're making a difference! 

putting on the ounces

Brooke's check-up on the 2nd went well. Doc was fairly happy with her weight gain. Really wanted more but happy overall. All other numbers looked good as well. Best part about the appointment this time... A pop-in visit from one of the other cardiologists who saw Brooke a lot during her recovery time in the CICU as well as the fetal care coordinator who checked on us nearly daily throughout our stay in St. Louis. So much fun. They literally heard that Brooke was in for an appointment and tracked us down as we waited in the room for our cardiologist. Our little one is well-loved by many...and we are so grateful for that! We also stopped in at the CICU to see if any of our favorite nurses were there. We got to say 'hi' to one of them as it was pretty busy at the time.

Brooke continues to gain weight well. She's gained about an ounce a day over the last week and a half. She hit 9 lbs on the 7th! Woohoo! We discussed the timing of the second surgery again with our cardiologist. She said it's ideal if we can get Brooke to 12 lbs. prior to that surgery, but she also reminded us that weight alone is not the determining factor of when the surgery happens. They will continue to closely monitor her oxygen saturation level and heart rate as she grows. Depending on those numbers as well as other "pressure numbers" that they will check when she has a pre-op heart cath, Brooke may have surgery before she reaches 12 lbs...or some time after. The age range is anywhere from 3 - 6 months on average. Sometimes even longer if her oxygen saturation stays at a good place. They warned us that as Brooke grows, her heart function will begin to decline as she outgrows the shunt in her heart and we near the second surgery.

For now, Brooke is on a continuous feed (always hooked up to the feeding pump and fed through her NG tube) 24/7 other than briefly coming off the pump to work in three bottles during the day. She does really well with bottle feeding, but she was spitting up a lot before we switched her feeding plan. And, she will only drink about an ounce at one feeding. For now, she seems to be gaining weight well and not spitting up nearly as much with the continuous feed. Huge relief for us...and huge praise!

Brooke has had a few visits from a speech therapist recently, too. The speech therapist indicated that Brooke is feeding really well from the bottle. Bottom line, as she reminded us, the priority is for Brooke to put on the ounces. If that happens best through the NG tube and continuous feed, that will be our focus. However, we will continue the bottle feeds a few times a day so that we can maintain or even improve upon good bottle feeding.

Brooke's personality is really starting to shine through her sweet face. She loves to watch her sisters play as well as follow me with her eyes if I walk through the room. She's making those sweet cooing noises more and more each day. She's a very content baby, only fussing when she loses her paci or has tummy trouble. One of my favorite things about her...she smiles at me every time I talk to her...just like she did in this photo. :) Melts my heart.

catching up...finally

So, it turns out that home life with three munchkins, including one with some very special needs, is a little crazy...and a lot exhausting. Whew! :) But I wouldn't trade it for anything!

Here's a little catch-up...

11/25/13 - As you probably read, we were discharged that day. We actually ended up spending the night at our temporary St. Louis apartment because we left the hospital so late in the afternoon. We had both vehicles packed and ready to head home home on Tuesday. That honestly seems like an eternity ago. We were thrilled to be home for Thanksgiving and enjoyed a very quiet, low-key week at home together. 

11/30/13 - After the quiet start to being home, Brooke ended up being readmitted on the following Saturday evening for gradual weight loss and increased emesis (fancy for "vomiting"). That Friday night she was really irritable with every feed. Then John woke up Saturday morning with the stomach flu. Yuck! We thought Brooke might have a touch of that, so I called our nurse practitioner who works closely with our cardiologist. She requested that I go ahead and bring Brooke to St. Louis to be readmitted and watched for a few days. So, with John in bed with the flu and John's dad as my chauffer, off I went with Brooke while his mom stayed here to care for the girls. Thankful for them! By the time we left our house for St. Louis, I wasn't feeling well either. Ugh!

Brooke did all the things they wanted her to while she was admitted the second time around...ate well, vomited little, gained weight, passed all the "tests" (EKGs, echos, labs, etc.). Yay! The nurses encouraged me to keep a little distance and rest as much as possible while she was there since I wasn't feeling well with stomach stuff. I think it was their way of getting rid of me so they could have fun with our little bundle. :) Boy do they LOVE her. Several times I would come in to check on Brooke, and one of the nurses or night cardiology fellows would be holding her. I love that they love her so. :)

12/2/14 - John finally recovered enough to make it to St. Louis, and his dad returned to Savoy. He spent most of his time in St. Louis recovering in bed the first day and half.

12/4/13 - Brooke was discharged (again)! :) We headed back home hoping that we would be here to stay...other than follow-up appointments every other week...and we have been!

12/18/13 - Our first cardiology follow-up back in St. Louis. Brooke checked out well overall. Her blood pressure was a bit high, so they did an echo to be sure everything looked okay with her heart. All looked good. Also met with the dietician to discuss changing Brooke's feeding plan as she hadn't quite gained as much weight as they'd like. Went home with a new plan and feeling good about our check-up.

Between 12/4 and 12/18 and since then... We've had a handful of home nurse visits, had a monthly RSV vaccination, had a visit from a physical therapist, changed Brooke's NG tube (that was fun), had phone consultations with our cardiology NP, changed Brooke's feeding plan twice, gave Brooke her first real bath just a couple of days ago, had a wonderful, quiet Christmas and fun NYE celebration here at home and have THOROUGHLY enjoyed being HOME together for an extended period!

With the most recent changes to Brooke's feeding plan, she is gaining weight better than ever. She is now mostly on a continuous feed (meaning she gets a slow, continuous feed through her NG tube all day and night) other than two small bottles per day. We were disappointed to have to go to this plan as it makes holding her and moving her around during the day much more cumbersome. But, we are thrilled with her weight gain! Our next cardiology follow-up in St. Louis is tomorrow (Thursday, 1/2).

Praises...

• God's provision.... gifts, meals, financial blessings... We are SO humbled and grateful for each and every one.
• Brooke's good weight gain especially over the past 4-5 days.
• Brooke's PT said she is doing all of the physical things a two-month-old should be. Yay!

Prayer requests...

• Pray for continued good weight gain for Brooke.
• Pray for protection over her and the rest of us especially during this cold and flu season. A cold or the flu for Brooke can easily mean hospitalization. This is why we can have only a few limited visitors...and why anyone who walks through our door can't have been sick (or had a sick family member) in the few days to week prior.
• Safe travel to St. Louis and back tomorrow.
• Pray for all five of us as we transition into our new normal routine next week when John returns to work, Ab returns to school, etc. It's been SO nice and extremely helpful to have John home a lot this last month or so. And I've loved having my Abby home on break.
• Pray for John and I as we figure out how to balance taking even a bit of time for ourselves individually throughout the week. With John returning to a normal work schedule, that balance will naturally become more difficult for both of us. Since we've been advised to keep Brooke at home other than for her appointments, I don't leave the house other than for those appointments and running an occasional errand (which will only happen on the weekends now with John being back to work next week). 
• Pray for us, too, as we try and balance time with our other two girls. 

Thanks so much for checking in for the update! Hope to have more frequent ones as we settle into our new normal routine...if I can stay awake. ;)

Here are a handful of photos from the last few weeks...

 sweet sleeper

smitten sisters

 snuggling with Mom

 hanging with Dad and sisters

post-bath curls...love 'em

sisters sisters