HOME or bust!

We're headed home with our sweet Brooklyn Hope...in a couple of hours! Ahhh! Crazy day today trying to tie up all the loose ends, soak up every little bit of learning we can, etc. Still have quite a bit to do. Bottom line, Brooke passed her "exit exams" this morning, and we are outta here!

 

Praise, praise, PRAISE HIM!

 

We cannot wait for Brooke to "see the world," as Big Big Sister said last night. I cannot wait to be in my own home with my little family of five, sleep in my own bed with my husband, snuggle my three girls on my own couch...

 

More from home!!

 

 

graduation day...and more

I can't believe I haven't updated since Saturday. Wow! What a whirlwind it's been since then. On Saturday afternoon while we were out playing in the leaves at the park with our big girls, Brooke graduated to the step-down wing. Basically, this means she is doing well, is out of intensive care and is another step closer to going home. The approach is much less hands-on here in the step-down wing as far as the nurses are concerned...and much more hands-on as far as we're concerned. Vitals are checked every four hours. Lots of various doctors, nurses, therapists and the like still come to check on Brooke throughout the day (and night). There are nursing students and their instructors here every morning coming in periodically learning, teaching, checking. But, the most important difference for us is that we get to care for our newborn in some "normal" ways like feeding, diapering, swaddling and snuggling...and be very hands-on in learning how to provide the special care Brooke needs with feeds, medications and such. SO exciting to pick up my little one when I want, change her diaper when she needs it, soothe her with a snuggle when she needs it...or when I just want to hold her for a long, long time. It's absolutely wonderful.

 

Needless to say, Brooke has continued with great progress. As of Sunday, she is completely off oxygen. As of Monday, she has no more PICC line (no more IVs!). As of Tuesday morning, she is on full feeds (2oz + fortifier every 3 hours). And, she is now taking on average close to an ounce from the bottle with each of her daytime feeds. She is on very small doses of just three meds--two of which she'll go home on--which she takes either orally or by NG tube. Her latest echo, EKG and chest x-ray all looked great. Know what all of this means? If her good progress continues throughout this week AND John and I learn, learn, learn what we need to for her care at home, there's a good possibility we will be heading home next week!

 

As I've said many times, THANK YOU from the bottom of our hearts for supporting us in our journey through encouragement and prayer. We are so grateful for you!

 

We'd love for you to continue to pray...

• For Brooklyn to maintain this steady course of progress with feeds. The biggest hurdle at this point for her is sustaining the energy to drink an entire 2oz bottle and keeping each feed down. She's actually quite good at drinking from the bottle, as the speech therapist has assured us, but she lacks a lot of stamina for enduring even a 2oz bottle. She tires out after drinking just a third to half of that. She's also spitting up quite a bit.
• For John and me to continue to have good, focused learning this week as the nurses and other staff prepare us for life at home with our sweet bundle.
• For our family as we move toward transitioning back home and establishing our new normal.

 fun in the leaves at Forest Park

 

 

 

 

sister snuggles

 

Mom's favorite way to snuggle

 

 

Daddy-daughter time

 

 

 Wednesday...first time in clothes!

bottle feeding!

Brooklyn has had a great last few days! More good progress. Had to go back on some sedative briefly on Wednesday as well as increased oxygen. By Thursday she was improving again and adjusting to weans on both. She is on some nutrition by IV as well as some oral heart medicine and a tiny bit of fluids. She looks great and her numbers look great.

The big news right now...we started trying bottle feeds yesterday! She did really well with the first drinking a whopping 12ml of breast milk from the bottle. :) She gets the remainder of her current feed amount through her NG tube. We are almost halfway to the ideal amount of 60ml. She is tolerating the milk SO well. The speech pathologist was here for the first feeding and will return on Monday to coach us through more bottle feeds. Though I've been through plenty of newborn feeding with Ab and Em, I learned a lot from our speech path regarding what to expect with our sweet heart baby. The one thing that struck me the most was how quickly she tires out from something as simple as eating. We have a long way to go on switching over to bottle feeding, but we knew that would likely be one of our biggest challenges when we start transitioning toward home at some point. For now, she is proving to be such a little fighter, and I have no doubt that she will make great strides in eating through the coming days.

In other big news, we were moved from the main CICU floor down to an "annex" room that's sort of a transition between intensive care and "the floor"/"step-down." This was a bit of an unexpected move as they needed Brooklyn's room right away for a more critical patient. But, as our cardiologist said, "it's good to be the patient (especially in a FULL CICU) who is doing the best and is ready to be moved to a different room." Brooklyn is still considered in intensive care, but with our move we have already experienced a shift in taking on more responsibility with her...diaper changes, soothing and now feeding. It's SO exciting to be doing those things that seem so simple but are a big deal when it comes to a newborn who's been through as much as she has already. I've never been so excited about changing poopy diapers! :)

Here are a few pics from Brooke's first couple of bottle feeds...and some sisters that were very excited to see each other after being apart this week. We're off for more family fun today!

buddies :)

Sigh... I could watch her sleep all day/night long...

great strides

Praise God for progress! I have NO doubt that God is hearing and answering the prayers of the faithful...YOUR prayers! THANK YOU!

 

Brooke has made some amazing strides in the last 48 hours. Doctors concluded that she had either a little too much fluid in her lungs and/or a partially collapsed lung that was causing extra stress in the form of breathing issues, high blood pressure and an elevated heart rate for Brooke. However, once they got her relaxed with some sedative and got her to calm down consistently throughout the day, her heart rate and blood pressure finally leveled off and have stayed within a fairly normal range. She's also having some therapy where they pat her back for several minutes to loosen mucous in her lungs and then suction it out. She loves the patting. The suctioning, not so much. :/ The therapy seems to be making a big difference though.

 

So, within the last 48 hours... She had her chest tubes removed. Yay! She has been weaned off all medications other than a little Tylenol now and then. She has also been weaned back down to a "normal" cannula for oxygen. They are still trying to find the right balance of oxygen for her so that she's not working so hard to breath normally. Naturally, her heart rate tends to increase when she's working harder to breath. But, overall, she is much more content throughout the day. She is sounding and looking much more like a "normal" newborn. The sweet little kitten-like sounds are turning into those sweet newborn cries as she works through the hoarseness from having the breathing tube.

 

She also started feeds again today. Wahoo!! She's tolerating mommy's milk very well. And...the big news yesterday was that John and I got to snuggle her for the first time since her surgery last Monday. Heaven. A little piece of heaven. And, I shouldn't be surprised at how very content she was in our arms. She hasn't slept so soundly or been so content since her surgery as she was when she was in my or John's arms. I held her for a while today as well. I. am. in. love. :)

 

 Friday

 

 Sunday

 

 

Monday

 

 Tuesday

 

 

 

Wednesday

 

a sleepy update

I can't count the number of times I've sat down with my laptop to post an update...and fallen asleep before I finish. So, here's a quick update before I fall asleep...again. :) If something doesn't make sense, it's because I fell asleep again.

 

Brooke had a good afternoon and evening on Friday. Once they finally found a good balance of morphine and Tylenol, she was much more comfortable and at rest.

 

Saturday was a big day for her. She had her catheters, pacing wires and the three right atrial lines removed. They were also considering removing her chest tubes. However, she still had enough drainage to warrant keeping them in for now. But, the other three things were a big deal! Just another good step forward in recovery! Because of all of these changes, she was irritable off and on throughout the day, but they were able to keep her calm and comfortable for the most part.

 

Sunday was a different story. John was with her most of the morning while I spent some time at the apartment cleaning, doing laundry and playing with our big girls. She was very irritable all morning long. She ran a slight fever overnight, had to be suctioned from her nose quite a bit and needed lots of consoling. She also needed more oxygen, and her blood pressure was elevated quite a bit. The doctor was concerned that she could possibly have one of a few different things...a respiratory infection, pneumonia or an infection in the blood stream. They did some blood work, took x-rays of her chest and abdomen and did an echo. The respiratory test came back negative. We will receive results from the other two blood tests (for pneumonia and an infection in the blood stream) in another day or so. The echo showed a well-functioning heart. Woohoo! The x-ray of the abdomen showed nothing of significance. The chest x-ray showed a "hazy" right lung. The doctor said this could indicate either a partially collapsed lung or post-op pneumonia. As I said, they are giving her extra oxygen, and they also started antibiotics in anticipation that one of the tests will come back positive. They stopped feeds (breast milk through her NG tube) for now and reintroduced the medication that helps regulate her blood pressure. 

 

At this point, she is doing well. Still on a higher level of oxygen but coming off of the blood pressure medication. She is also off of morphine completely, thankfully. They have been able to keep her comfortable with Tylenol as well as reintroduce one of the pain meds she was on previously. Those things seem to be helping. However, she gets quite upset when she loses her paci, has her diaper changed or is unwrapped from her swaddle. Can't say I blame her. :) I thoroughly enjoyed the opportunity to console her while her nurse gave her a wipe-down bath and changed her dressings late Sunday night. Couldn't really hold her close, but I was able to help her keep her paci in and snuggle her with my hands while she was in her bed. I'll take it! For the record, I'm totally in love with her grunts and wimpers. My goodness. They are pitiful and oh so adorable all at the same time. :)

 

In other news, we've had our big girls with us all weekend! So grateful for this time with them. Balancing time with them and time with Brooke has been a challenge, but we have had a fun weekend overall. More on our family fun at The Arch in another post.  Ab has really enjoyed spending time at Brooke's bedside helping her with her paci and rubbing her forehead. So, so sweet as usual. :) And Emily has been so sweet, too. She kept asking to see  (and "pet") Brooke this evening. Unfortunately, Brooke really needs low stimulation right now and can't handle her noisy two-year-old sister very well. Sweet girl gets so excited to see her baby sis, she can't help herself. :) 

 

So, praises...

• Our family is together again for a couple more days. 
• Forward progress with getting lines and tubes out one at a time. 
• Brooke rests calmly and peacefully for the most part at this point. 
• Brooke's last few nurses have been outstanding. So much easier to leave her bedside occasionally knowing she is in such good care. 

Prayer requests...

• Doctors determine whether or not Brooke has some sort of infection or collapsed lung and why her temp and blood pressure were elevated.
• For John and I to balance time with our big girls and time with Brooke. Right now we're sitting with Brooke in shifts while the other spends time with our big girls                                                                                                                                                                                                                                                              

some fun in the hospital garden

 

and a gorgeous sunset while we were up there...what an amazing Creator we have!

 

no ventilator...now we can see her face (or at least more of it)!

 

two smitten sisters :)

morning update

12:00 pm...

Brooke had another great night. They removed her ventilator tube this morning at 8:00. She has been breathing wonderfully on her own since that time! Praise God! She has also been very agitated  as well, unfortunately. To remove the tube, they had to stop feeds early this morning as well as come down on her sedative dose so that she would be more awake and breath better on her own. That had an obvious effect on her comfort level, so they slightly increased her sedative dose as well as started morphine to help her calm down. She has had brief periods of time when she relaxes and rests but a lot of agitation as well. So hard to watch. We can hear cry now, but she's very hoarse from the tube, so it's a faint cry. Nonetheless, it's hard to watch and listen to. Also, the doctors want very low stimulation, so we can't touch her or talk to her right now. We've stood by her to help her keep her pacifier in, but that's the extent of contact at this point.

 

Please pray that Brooke's little body calms down and that they can determine what's causing the agitation and address it. Please pray that she continues to breath well on her own and just rests, rests, rests. The attending doctor just came in a few minutes ago (while she was resting well) and said she looks wonderful. Five minutes later she's agitated and crying (really hard). :(

 

 

7:45 am...

Quick prayer request... They are pulling the breathing tube this morning in just a bit. Please pray that she handles this well and her little lungs continue to show such strength. Thank you!

evening update

WARNING (especially for your kiddos): There are a couple of somewhat graphic images on this post.

Brooke has tolerated her ventilator weans like a champ today. Based on her agitation (sad little cries) this afternoon, it was obvious to me that she is ready to have this tube out of her throat. They are continuing the weaning process throughout the night and hope to have the vent out by tomorrow morning around 8:00.

Also, the echo that was done this morning indicated no concerns or issues. Her heart looks great. The attending CICU doc assessed that her heart is just going to need a little time to adjust to the repairs, and, with time, her heart rate should come down into normal range. And it has! It's hanging around the lower 150s now! Woohoo! Thank you for being faithful to pray for our sweet babe. God is answering, and we are SO, SO, SO thrilled with her progress. The remainder of her numbers continue to look great as well. In addition to all the prayer support she's had, I'm sure the Kari Jobe music I've been playing for her is helping. :)

 

This girl. This. girl. She's a fighter. A heart warrior for sure. She's been through more in her nine days than most people will go through in a lifetime.

 

This was quite hard to take when we first saw her after her surgery on Monday, especially with her chest still open...

 

 

...but, it's getting easier as we get to spend some sweet moments like these with her awake and alert and responding to our voice and our touch. She's holding Daddy's finger with her left hand. Just cannot wait to snuggle her again.

 

 

afternoon update

Brooke had another great night. We started the evening concerned about her elevated heart rate. By this morning it had come down around 8-9 points. Right now, it's holding steady in the low 170s. Much better than in the upper 180s. Yay God! :) The cardiologist wanted to go ahead and have the echo done this morning just to take a closer look at Brooke's heart since they hadn't done that yet post-op. We should receive the results of those later this afternoon during rounds.

 

Also, they are starting to wean Brooke off of the ventilator in hopes that can extubate (remove the breathing tube) tomorrow. She is currently handling the weans very well, breathing close to 3/4 on her own at this point. She also started feeds this morning. Nine days old, and she is finally getting food (other than the vitamins and fats she was getting through IV). Her diet now includes breast milk through her NG tube. Yay! The amount is minimal right now as they have to be sure her tummy tolerates it well, but this is an exciting step forward!

 

Brooke had about an hour-long alert period this morning. She responded really well to our voice and touch, looking at us bright-eyed when we talked. So fun! So great to see her eyes open and not so sleepy and out of it. The only downside is that since the paralytic has worn off, it is evident when she is agitated and/or crying. She doesn't have an audible cry as she's on the ventilator, but she makes the same  very sad/upset face and gets red just like she does when you can hear her cry. SO hard to watch that and only be able to hold the top of her head or her little hand to console her. :(

 

I will hopefully have another update this evening. Moving forward I plan to try and get two updates per day on here, once after each set of rounds (mid-morning and early evening).

 

Keep praying, you guys! We SO appreciate it. God continues to lift us up, and His hand is SO evident in Brooke's recovery. :) :)

update

9:00 pm...
During late afternoon rounds the team discussed Brooke's elevated heart rate. All other numbers look good, and Brooke looks pretty good herself. Huge praise! However, they are trying to determine why her heart rate is remaining elevated into the 180's. An EKG was done but showed no signs of abnormal arrhythmia. They will reassess at rounds in the morning. If her heart rate hasn't come down into the 150's/160's, they will do an ECHO to gain more information.

Please pray for a significant decrease in heart rate and for it to remain steady in the range the doctors want it. Also, please pray that the team quickly determines why her heart rate is elevated and the best approach to getting it to come down. They are basically looking for answers at this point.

A praise...Brooke is awake enough that she is responding to our touch and voice. She grips our finger and doesn't want to let go. So sweet. She has opened her eyes just a bit but is still heavily sedated. Helps to know she can hear and sense that Mommy and Daddy are near her. We just have to be careful that the stimulation doesn't increase her heart rate.

1:50 pm...

Doc just came in to assess Brooke. Still doing well. Numbers look good. They just cut her sedative dose in half to get her to wake up a little more. The next big goal is to wean her from the ventilator and get her breathing on her own. Waking up will help in working toward this goal. It will be a gradual process as her sweet little heart must tolerate the change. Once she is breathing on her own and her heart is stable with this adjustment, they will start gradually working her off the other medications and removing tubes and IVs and such...and there are a lot of them. Hour-by-hour. Another step forward! Keep praying!

chest closure this morning

12:45 pm...

Thank you for the continued prayer, everyone. All went very well with the chest closure. Praise God! Her heart and rest of her body seems to be tolerating the closure well. Numbers look good. Heart rate is a bit high but seems to be steadily improving. They just stopped the paralytic medication so once she starts coming out of that, she will start moving a bit and opening her eyes. She is still heavily sedated to keep her relaxed and pain-free, which reduces heart stimulation. As usual, she will continue being closely monitored as the next several hours are critical in observing how her repaired heart is functioning. So, we wait and watch...and praise God for another step in the right direction!

8:00 am...

Brooke had another great night. Doctors decided this morning that her swelling has improved so much that she is ready for chest closure. That is happening at 8:30 this morning. Please pray for the surgeon and his team and that Brooke's body, especially her heart responds well to the closure. We will likely not see her again until lunch time. Will update when I have info. Thank you!

surgery day results & recovery

Okay, apparently I was SO exhausted last night when I sat down to post to the blog that I didn't even remember the empty post I put up entitled "so far so good." :) John mentioned it this morning. I have no recollection of hitting "publish." I was also in the middle of texting/posting a Facebook update at 11:30 last night when I fell asleep, only to realize this morning that I never sent it. :) Kinda funny, but that gives you some perspective on how exhausted we are. So, for the actual update...

 

First, THANK YOU for caring, loving, supporting, encouraging and praying! We appreciate you so much. We literally felt lifted up as so many of you prayed for and encouraged us yesterday. The work of God's hand has been obvious to us! Praise Him!

 

Yesterday was hands-down the most difficult day of our entire lives, and without a doubt, God sustained us through your prayer support and encouragement throughout the day. We enjoyed some precious time Sunday night (a few pics in the last post) snuggling, holding, kissing, talking to, singing to, reading to Brooke. I even got to give Brooke her pre-op wipe-down bath. After several hours with her, we finally went back to our apartment for two hours of sleep. We came back to the hospital yesterday morning at 5:30 for more snuggling and holding before they took her down to surgery at 7:30. I've never felt the kind of emotion that I felt in those two hours. The only way I know to describe it...absolutely gut-wrenching and so, so sweet and intimate at the same time.

 

After we kissed Brooke one last time, they took her to surgery...and we waited. We received updates from the OR nurse every hour or so, as evident by the Facebook updates and texts I sent yesterday. THANK YOU again for praying for Brooke and for us as she underwent the Norwood procedure--the first of her three open heart surgeries. As I indicated yesterday with my updates, the surgeon said it couldn't have gone any better. Huge praise! This was a major hurdle for Brooke. But, as we well know, it was the first hurdle, and the next couple of days are critical to her recovery. We've been by Brooke's bedside off and on consistently since about 4:30 yesterday afternoon when she came back from surgery. I've never seen so many wires, tubes, monitors. It's quite an overwhelming sight. One I will eventually show a picture of to give you perspective (if you've never seen a little one after a major operation). For now, I'll just leave you with the image above...Brooke on her way in to the OR. At this point, we are able to touch her feet, hands and top of her head. We love talking to her, singing to her, reading to her and rubbing her little foot. She is completely paralyzed through medication so that her heart is not stimulated anymore than it needs to be to allow it to heal and grow stronger. She will have an open chest for another day or so until the extra fluid drains off.

Another praise, she had a great night! Overall, her numbers look good. The first several hours post-op for her are all about keeping her comfortable and closely monitoring heart function and many other fine details about how her body is responding to the heart operation. She is doing well overall, and we are thrilled. However, we know that recovery is day-by-day and really hour-by-hour at this point. The two main concerns right now are the elevated lactate in her body as well as the amount of urine output. They are currently administering a drug to help her pee, which may very well also help her lactate come down into a normal range.

 

Praises

• God's mighty hand is at work and evident!
• Surgery went very well.
• Brooke is doing well so far in recovery.
• We have excellent care here at St. Louis Children's. Phenomenal doctors and staff!
• We have excellent family and friend support, and that has made this journey easier.
• Our big girls are doing well back home.
• God is drawing John and me closer to Him and closer together through this journey.

Prayer requests

• Brooke's lactate will come down and urine output will increase.
• Medical team will find the right balance of medication to help Brooke in recovery.
• Brooke's heart will continue to tolerate the shunt that was inserted and continue to function amazingly well.
• Brooke's little body will tolerate all of the medication she is on (6-8 different meds at this point).
• Brooke will continue to receive excellent care, including the best-of-the-best nurses. We have one day and one night nurse assigned to Brooke each 24 hours. They have all been wonderful, but we have our favorites already. :)  
• John and I work in some rest here and there this week as a majority of our days and nights will be spent at Brooke's bedside. 
• God's power will continue to be evident to all involved and that HE would be glorified!

Thank you again for lifting us up!

a quick update & prayer requests for surgery day

First, let me apologize for the lack of updates on the blog. I know so many of you have been praying for us and waiting for updates on how Brooke's doing. We have just been quite overwhelmed with the demands on our time and attention...and trying to enjoy our sweet bundle in the meantime. Actually, overwhelmed is putting it lightly.

 

How's Brooke? As one of the doctors put it during rounds this morning, she's "doing very well clinically." All things considered, she really is doing well. In fact, she's doing as well as she could be at this point heading into surgery tomorrow. We had a great meeting with the surgeon two days ago. He explained the Norwood procedure again in even more detail. In short, she will be put on a bypass machine while her heart is stopped for the surgery to be done. After the 5- to 6-hour surgery, her chest will be left open for a couple of days while she is closely monitored. If all looks good, they will close her chest on Wednesday or Thursday. She will then be remain in the Cardiac ICU for a few weeks of recovery time. There's a lot more detail, but I'll spare you (and I can't begin to explain it all anyway). :)

 

How are we? Hanging in there. I can't even begin to explain the emotions we've felt this week. God is sustaining us as only He can, and your prayer support has A LOT to do with that. Brooke's big sisters enjoyed their time with her while they were here. Abby couldn't get enough of rubbing her sweet little head. So precious. And, Emily, well, she thinks Brooke is hilarious, and she is fascinated with all of the monitors and such in the room.

 

Prayer requests...

• Rest, focus and guidance for the doctors and staff tending to Brooke tomorrow.
• Rest and peace for John and me as we try to sleep tonight, as we spend time with Brooke in the morning before she goes in and as we wait the 5-6 hours during surgery. We plan to be here with Brooke by 5:00 a.m. so we can spend some time with her in the morning before they come to get her for surgery around 7:30 (or before).
• That our girls continue to do well this week, and Ab transitions back to school, as they are cared for by our sweet family...and maybe for the family caring for them. :)
• Obviously, for Brooke, that she continues to be a fighter! That she tolerates surgery remarkably well. As the recovery nurse mentioned today, two of the most important things in Brooke's recovery, especially immediately, are rest for her body and heart and that her urine output is good.

There are probably many more specific things for which you can pray, but those are the things I can process at this point. We appreciate your continued care, concern and support for our sweet Brooklyn Hope and our family. We "know that in ALL things God works for the good of those who love Him and are called according to His purpose." Romans 8:28

Pray on, prayer warriors!!!

 

By the way, I do plan to update the blog with a few photos from the last couple of days. For now, the most critical things were a quick update and prayer requests especially as they relate to Brooke's surgery starting at 7:30 a.m. or possibly earlier tomorrow (Monday) morning.

Until then, we're spending some precious family time together...
 

 

  

 

After a full day of rest, our sweet babe decided to finally open her eyes this evening and check out Mom and Dad. God is OH SO good...

 

update coming

Just a quick note to let you know that I'm working on an update, including a list of specific prayer requests. Surgery is scheduled for tomorrow morning at 7:30 a.m. Will try to include a few more pictures, too, but those may come in later posts. I will back-date those, so keep checking back. :) In the mean time, John and I are savoring some wonderful time with Brooke tonight before she goes in tomorrow.