WOW how this year has flown! Just a quick post to say Brandt made it with very good health through another flu season with no RSV...despite one scary visit to our local hospital in November of 2011 as a result of a 104 to 105 degree fever. He continues to grow and develop well -- running to keep up with his brothers and seeming to me to have MORE energy than they had at his age. But then again, maybe I'm just 9 years older:-) In March we shared his story with the American Heart Association to participate in the Heart Ball, and he was his usual social self. The one thing we'd like to see more of is talking and we are working to get him in to a developmental specialist to see if he will need speech therapy of any kind. He's very communicative, loves to sing and dance, and we know he hears and understands...just doesn't verbalize. He'll still say "mama, dada, nana, pa, mimi, wa wa, and most recently ba bee" but other than that not much progress. He's weighing in around 25 lbs and the cardiologist will schedule heart catheterization when he reaches 30 lbs, to determine the best time for his next and Lord willing, final surgery. So we continue to enjoy him and his happy-go-lucky ways--realizing that EVERY day, not just his birthday, is such a special gift from God!

One year ago today... Brandt's 2nd open heart surgery had just been completed. Thankful to a great God for amazing healing!!

15 months!

Heart Cake decorated by brothers

Well all you Brandt fans out there...this will most likely be my last post for a while. I so appreciate how friends and family continue to ask about and pray for this amazing little man. And the really great news is that he continues to thrive! Both his 1-yr pediatric check up and last cardiology visit show continued growth and strong heart function. We'll have another echocardiogram the end of September, but unless anything changes, there are no planned heart surgeries or procedures until he reaches around 33 lbs. Most likely between 2 and 3 years of age.

We PRAISE our great God and plan to just ENJOY every single day--and Brandt sure makes that easy to do. He continues to bring joy to so many people with his smiles and happy waves and faces. We made a quick weekend trip to Myrtle Beach with family, and he loved getting to be outside for bike rides, swimming, and some limited time in the sand. This is such a change considering we have basically kept him in through his first year of life to avoid extreme heat, cold and germs. Dr. Raunikar reassured us that at this point, he can pretty much self-regulate as far as his tolerance to temperature and fatigue. And he definitely lets us know--plays hard and then crashes hard to sleep! He took his first long trip-- to Ohio in July--and while he's still not a fan of long trips or the car seat, we were excited to get to introduce him to friends and family there. Including a close family friend who is very sick with cancer and its extensive treatment. So we were thankful that he did as well as he did for the necessary traveling. He also enjoyed a little day trip to an amusement park and loved his first carousel ride--in fact we decided he would probably jump on some coasters with the older brothers if he could--no fear here!

He LOVES electronics and can unlock pretty much any cell phone he comes in contact with as well as operate remote controls, light switches, and the dish washer... Lights and fans are long-time favorites, and this week, almost exactly a week after his 15 mos birthday he started WALKING. Just took off with over 10 steps. He had been taking some hesitant little steps that were more of a lunge, but he seems to finally have the hang of keeping his balance. We are just blessed beyond words with his continued progress and growth. So enjoy a couple more recent pictures, and know that he's doing well. I will plan to post only for any significant changes at least in the near future, but again cannot express our gratitude for all the ongoing support and prayer for him that has been communicated by so many!

Happy 1st Birthday!!!

So I love these flowers that bloomed this month, because one year ago today these flowers were blooming at home while we sat in the hospital at MUSC waiting, and waiting, and wondering, and waiting with great anticipation for little Brandt's arrival. This year, not only did the flowers bloom early, but we have survived an entire year of the treatment of a severe congenital heart defect and all that involves, as a family. And survived isn't the right word I know...the difficulties of this past year have produced a "blooming" in our hearts--gratitude, appreciation for important things in life, increased confidence in God's character, to name a few. We just started an amazing series at church on the book of James, and the first couple verses discuss viewing difficulties in life as "joy." And that doesn't mean fun...but God does promise that the end results give an endurance we wouldn't otherwise have. And so, our flowers symbolize both the lessons and joy of this difficult year to me.

As does our handsome birthday boy's smile--he is so full of life, and fun, and mischief! May has been a great month for him. He gave us a little scare with the first cold/virus of his life. After getting safely through flu season, he came down with fever, runny nose and nasty sounding cough. But he checked out fine with no secondary infections, and in the meantime has moved from crawling to almost walking with no time wasted! He loves making any kind of mess, and has even started babbling some consonant sounds at us. We were thrilled to see all this progress at once from a developmental standpoint. Everything is "baba" and "dada" right now, and he wants to share these "deep baby thoughts" with anyone and everyone who might be around. Anyone who even walks by when we're out in public is fair game for his piercing stare and the ensuing flirty smile and baby babble. But let me tell you, his brothers are his favorites. Now that he can follow them around the house, he feels they are dutybound to include him in all activities, and wails if they dare to close a door on him to keep him out of trouble! He's a little daredevil with endless energy. Several people have remarked to me that we will really be in for it after his third surgery. Well, bring it on--this kind of mischief we couldn't be happier to see. We also welcome another nephew/cousin to the family this month, Mark Judson Grover, born 5.10.2011, and look forward to the "babies" being able get into mischief together.

So happy happy birthday our sweet heart baby--we treasure every minute!

April 2011 - Matters of Life and Death

Brandt's 11th month has been a full one--in many different ways. I've started several times to post an update, but haven't--also for many different reasons. Let me begin by saying, when I created Brandt's Beacon, I wanted to keep friends and family updated on Brandt's health situation. I wanted to keep some kind of record of his story. And mostly, I wanted that story to offer HOPE. And this mischievous, sweet, loveable boy has, by the grace of God, done just that. He doesn't quit! We thought he'd feel better after his bi-directional Glenn, but he's a WILD man. One week before he turned 11 months on April 25, he got the hang of crawling. It was a hilarious half drag half squiggle at first. He figured out how to stand on his head and do a comical plank--then get stuck in that position. But once he realized he could get his legs to follow, he was GAME ON. The word "no" is now an integral part of his caretakers' vocabulary. Not that he likes to acknowledge the word, but he's learning. As my father-in-law says, "Half a heart, double trouble!" And we love it. I think we'll need body armour after his third surgery--or at least some shots of Red Bull to keep up with him.

So logically, I think, our boy is doing well beyond all imagination, life should be back to normal, right? Wrong. This month has been, I think, the culmination of many swirling emotions. Due to physical challenges for me I am completely dependent on family for Brandt's care...and amazing family it is...we are so blessed!! But I hate being a burden...and wow I sound like a whiner. Putting all this into perspective, and I hesitate to write about it, because there are no words--two of the babies I asked you to pray for unexpectedly passed away this month. Little Patterson and Baby Olivia had both faced massive struggles in their fight for recovery, but we were so thrilled when Patterson got to go home, and Olivia's parents were also anticipating that in the near future. We shared hours together in the PCICU waiting room with these dear families when Brandt was at MUSC in December. They spent MONTHS there, fighting alongside their sweet babies for any news of improvement and recovery. So we were shocked and devastated when I read that their fight was over.

Our boys also lost a schoolmate to cancer this month. I grew up with his parents, and we had spoken with them occasionally as Jona fought his battle over the past couple years. Throughout the ups and downs, he inspired so many with his persistently optimistic outlook. He insisted on being at school as many a 16-yr-old would not want to be even when healthy! He continually expressed his love for God and faith in His Savior's goodness. He was ready to meet His Savior and his family rejoices that he's in Heaven, pain free, as do Patterson and Olivia's parents.

And so, how do you address these events with 10 and 11 yr old boys? They see the grief that comes from aching for these families' losses. We talked about Jona's praise and thankfulness, even as he was dying. We talked about how as Patterson's mom mentioned, he and Olivia can be playmates in Heaven. That we don't know everything about Heaven but that we know it's more wonderful than we can ever imagine. And these families have all focused on that, and continuing to offer hope to others going through the same battles. I think it finally hit me, through the recent Easter season, that "because HE lives, we can face tomorrow." Because Christ defeated sin and death, and lives, is the only reason we don't have to live in the fear and power of death. Grief is a part of life, but true hope comes from the power of Christ, Victor over death. And we pray for His grace and peace for each of these families, and ask you to as well, because we CAN'T offer hope and comfort through human perspective. I can't tell my boys--or myself--that Brandt will make it through his next surgery, or today, or tomorrow for that matter. Or that any of us will. But I can offer the confidence that "NOTHING can separate us from the love of God, not death, or life...not things today or things tomorrow...NOTHING." And that's a beacon of hope.

Spring Break--Brandt's first "day trip"

Love my brothers!

Playing with cousin Cali

Reading with big brother Seth

Yesterday was Brandt's 10-mos birthday, and we celebrated with a trip to the zoo with the whole fam! With the older boys on spring break, we were incredibly excited to take our first "fun trip" with Brandt able to enjoy being out and about. Glenn and I both had the day off--my first since going back to work that was not connected with a dr visit! Brandt got his last RSV shot this week, and being past the official flu season and so many germs, we feel able to relax about having him around crowds. Plus the weather was gorgeous, and Glenn's parents were able to join us for a great day.

We were thrilled to learn that Brandt has surpassed the 20th % in weight...that's a lot of growin' for a tiny little fellow below the 1st % when we came back from Charleston right before the New Year. What a huge joy he is to us every single day...just loving life, loving his brothers, and reminding us how God answers prayer. He also had a follow-up cardiology visit, and his heart function continues strong as far as no additional leakage or narrowings. Next visit will be 3 months out...we will hardly know what to do with ourselves!

9 months!

Sittin up all by myself!
Sheba tolerates me, and I LOVE to pull her ears or tail.

Playtime in my saucer...happy as can be!

I started to write this update a month ago...and here I am still trying to load 9 mos pictures and we're up to 10 mos already. But for all you Brandt fans...here's a couple months worth of reasons to celebrate! He continues to thrive--he's added a full range of foods to his diet and twirls his hands to ask for more with huge "mmmmms" for his favorites. Between 8 and 9 months, he went back to sleeping through the night on a regular basis-yay me-and still shows amazing energy during the day. We knew he was supposed to have a higher energy level after the Glenn surgery, and that has certainly proven to be the case.

He also started sitting up all by himself at about 8 and 1/2 months...still not really trying to crawl yet, but every time I start to get concerned about his progress, I think how mind-boggling it is that his little chest has been completely opened 3 times and he still has come this far.

I would like to ask you to remember a couple of Brandt's heart friends in prayer, as you continue to pray for him and his healing. First baby Mason had his bi-directional Glenn in February, and is working hard to try to come home from MUSC. After some infection complications and a surgery for a trach, he's finally feeling better, but I know his family is ready to come home. We also received word that baby Xavier, who was born while Brandt was at MUSC in December, had passed away Feb 25. He fought long and hard in his battle with HLHS, and I know his mama Ashley would appreciate your thoughts and prayers through her grief. Baby Patterson is home, but still needing around the clock care with the huge amount of equipment helping him fight his fight. And baby Olivia is slowly improving from a very difficult round of lung disease, still in intensive care at MUSC...since before we first went in December for Brandt's second surgery. My heart is full of care and concern for these amazing families...they have all been a blessing in different ways, with different battles. Certainly the list goes on, but these needs come to mind, and thank you, as you can, for thinking of these little ones who have been touched by heart disease and all it entails.

8 months old today!

Well of course I have to wish our big man a happy 8-mos birthday! Hard to believe, but I just stand in awe today of how great our God is, and what amazing things He has done for Brandt to be where he is...I am happy to report that all the bloodwork came back within completely normal limits, and the infection is just a bad memory!

He also had a good pediatrician appt (despite 4 shots) and is back to his 5th percentile for weight--yippee. We are able to start weaning him off the reflux meds, and Dr. Stoeber also gave me some help to continue supplementing his calories. He has really taken off with his solid foods--doesn't care for just the cereal but gobbles it down when mixed with a little bit of fruit or sweet potatoes.

And--we all survived my return to work last week. I miss him terribly but he's doing really well with Glenn's parents and sister all doting on him and eating up his back-to-normal bubbly ways. He continues to wake up at least once through the night, so the schedule has been pretty rough to date. I'm hopeful as he continues to heal completely he can return to stomach sleeping and at least be able to get through seven to eight hours...although after everything he's been through I have no complaints about an extra feeding through the night. Just much thankfulness for the continuing miracle of his life...

One year ago today...

...we found out the sweet little baby we were expecting had a serious congenital heart defect. One year ago today began a roller-coaster of a year filled with so many emotions I can't even begin to describe. In some ways, this year has been one of the longest in my life, and in some ways, it's a complete blur. We welcomed our third little boy into this world to watch him go through one medical procedure after another...and bounce back smiling. I could not have imagined the challenges...or the blessings. God has proved Himself faithful time after time, and we trust in that continuing faithfulness in a future of continuing uncertainties.

AND, the latest of the good news...Brandt got a great report from his cardiologist, Dr. Raunikar, at his appointment yesterday! His echocardiogram looked wonderful, and we're able to stop his lasix medication. I'm really excited about that, because it means the fluid around his heart is in good shape. Not to mention that I've been able to stop double-diapering since his fluid output is greatly reduced:-). His weight is back over 15lbs, so he made it back over the 1st percentile as far as weight gain. He's also been eating better, so we were hopeful of this increase, and expect it to improve even more as I'm able to get him started on some solid foods. We should get the blood test results back this weekend or early next week. Barring anything unexpected from those results--no more cardiology appointments for 2 months!!!!

I joked with Dr. Raunikar that we were going to go into doctor withdrawal mode...not really, as it's a huge relief to be able to scale back these visits. But we truly have made friends with this wonderful medical team. From the time Brandt's condition was diagnosed and I started seeing Dr. Greig and Dr. Raunikar on a regular basis, through the communication to the cardiac team in Charleston, we have felt completely supported and cared for on so many different levels. Dr. Raunikar and one of his nurses, Cammy, even called and kept in touch through our emergency visit to Charleston. Diane is a receptionist there at Greenville Hospital System and has checked us in for visit after visit, and when I came out in tears after confirmation that Brandt had an infection and we had to head back to MUSC, she stopped right there and prayed with us...just a few examples of a team going beyond caring for this little baby's physical needs!!

Brandt sees Dr. Stoeber for his six-month pediatric visit on Wednesday of this week. We hope to get his immunizations caught up and discuss reducing reflux meds and a plan to beef up the calories in his diet. Then Thursday I am scheduled to return to work. After such intense time with this little miracle, I am sure I'll have a lot of adjustments to make in the coming weeks. But we praise God for his provision to this point, and look forward to "catching up" in many different areas that have had to be put on hold out of necessity. Brandt will have good bonding time with Glenn's parents and sister, and we thank his Mom for being willing to watch our precious gift. The boys were scheduled to return to school Friday after a LONG Christmas break due to several snow days, but Seth came down with a fever close to 103, so we hope to have them settled back into a routine as well next week. We also continue to keep Brandt in as much as possible throughout the flu season. Lots of changes, once again, and I face them with hope--that is to say--a confidence that God will continue to lead and provide.

I will try to post occasional updates and pictures here, but plan not to have much breaking news or huge developments in the near future. We again sincerely thank all of you for your messages of prayer and encouragement, and ask you to continue to pray that Brandt will remain stable and growing, and that we'll have wisdom for all upcoming decisions.

Sleep sweet Sleep

Well I am going to blog more often about the fact that Brandt isn't sleeping well...perhaps some of you thought specifically to pray about that--for him and for me. But 3 of the last four nights he has slept at least six hours, and up to eight hours one night. He also seems to be in less pain and hasn't required pain medicine for the first time since we've been home.

We were supposed to have an echo and get his blood levels checked again today, but we have SNOW here and almost everything is cancelled. This appt is rescheduled for Friday, so I continue to reserve judgment on his status until then, but we are REALLY encouraged.

Also here is an encouraging story about the oldest survivor of HLHS...I've mentioned before that we're so thankful for all the advances in treating this condition, and at the time she had her surgery, only one in 10 babies lived!

http://www.npr.org/2010/12/13/131910144/as-newborn-heart-surgery-improves-survivors-thrive

Progress?

We're trying to get settled back in at home and to some kind of routine, but Brandt is struggling all over again with both eating and sleeping. The first couple days back I thought he was going to gradually INCREASE his sleeping time at night, but instead he's gone backwards. He's still basically happy, like he's feeling better, but at times just acts really uncomfortable. He won't sleep for more than 3 to 4 hours at a time, and only 45 mins to an hour average during the day. We continue to pray this is all part of the healing process...the doctors remind me he's been through an awful lot in the past month. After all, he had a heart cath, and two major open heart surgeries all within 3 to 4 weeks.

Monday he had a follow-up cardiologist appt, and that did put my mind at ease as everything looks good with his incision. He'll finish his antibiotic course tomorrow, and we'll have another check next Monday. The doctor ordered a blood draw to check for inflammation and white blood count for infection, and everything came back normal! What a relief...and I'll feel even better if his white count stays low after he gets done with the antibiotics. His weight has taken another dip, which is probably to be expected after all the procedures and sedations, but I still hate hearing that he's now below the 1% in weight...we're trying to get all the food possible into him. Another plus is that the reflux seems to be almost completely gone--one less challenge, even though his lack of appetite is unusual for him.

Glenn and I also celebrated our 13th anniversary this week...I am so thankful for all his love and support through this journey...God has been gracious to grant us a wonderful friendship and growing love even while life presents challenges we never imagined or prepared for!

Happy New Year!

Well here's to a brand New Year--hopefully one with no surgeries or emergency trips to Charleston! Brandt is doing GREAT so far at home. He wants to thank all of you who have prayed for, and loved, and supported him in so many ways in his first eventful year!

Heading home take 2. Got sutures+PICC line out, bloodwork+chest xrays are clear, +RSV shots up to date. Praying no recurrence!

Two Weeks Post-Infection

Two weeks ago today I was driving from dr. to dr. to try to figure out what was going on with our precious little boy...today he's on the road to recovery. It's been a long two weeks, but also a time filled with blessing. If you google "mediastinitis" you'll see what I mean. Almost every reference to this condition mentions "fatal." And that's the official diagnosis for Brandt's infection. So today I am thankful, again, for the great care here at MUSC, but also nervous. I just love Cathy, one of Dr. Bradley's staff, and she spent a long while with me today discussing some of the causes of infection from surgery. Incidentally, blood transfusions also carry this risk, and Brandt did have one of those right after surgery. The infection percentages here are very low, and they constantly work to eliminate them, but again, it just does happen sometimes. She assured me that they rarely to never see a recurrence of the infection after this cleansing, wound vac, and antibiotic treatment. That being said, the plan is for Brandt to be discharged tomorrow. And I am really ready to go home...but.


Today he had a really fussy day again. He seems to have one good day, then one rough day. Hopefully this is all part of the recovery process. I know that all the antibiotics he's on must bother his stomach. He's not eating well, or sleeping well, and it just feels like he's not quite right yet. He developed a rash on his chest and belly last night, and continues to run a low-grade fever between 99 and 100. But his incision looks great, the antibiotics should be taking care of any residual bacteria, and the doctors feel strongly he's back on track. I am probably just being paranoid...


They have increased his BP meds to the maximum dose because during his time here his BP has continued to run high. Apparently this does happen for single ventricle kids, especially after the bi-directional Glenn surgery. But I also think this medicine bothers his stomach. Tomorrow before he goes home they will do blood work to check his kidney toleration for the high dose of meds and his white blood count one more time. He also has to get his sutures out, have a chest x-ray to double check the fluid that showed up earlier this week, and get his RSV shot. So barring any other developments, we will make it home in time for the New Year!!

B is much better 2day...had a rough day yesterday w/100.4 fever+some fluid on his lungs. Incision is still healing well.

Ready to Go

...that is, I am ready to go...as in, definitely ready to be done being at a hospital!! But, we still don't want him to go before HE'S ready. Dr. Bradley still feels the incision looks great, but wants him to stay until he finishes the antibiotic. He slept 5 hours last night, which is great. But, today, he's been REALLY fussy. So I honestly want to be sure he's getting back to his old self before we leave...I just hate being away from the rest of my family, and it's so frustrating when he's miserable and I don't know how to help. I talked to the drs. on rounds about his high irritability, pulling at his incision, rough time sleeping, and lack of appetite. He obliged by screaming and holding his breath and turning purple while they were here. He's running a temp between 100 and 100.4, but again, there's no outward indication that healing is not progressing well.

They did put him back on oxygen sat monitoring, and ordered a chest xray. Apparently he has some slight fluid on his lungs, not enough to be concerned about, but enough that they want to continue his lasix when he goes home. Poor kid also got a suppository prescribed...And nothing else that they can figure out would be causing his discomfort.

The positives...as I've done some research on staph infections following pediatric open heart surgeries...he's actually recovering quite quickly. I'm so thankful for the aggressive and quick treatment from Dr. Bradley and his team here. So please continue to pray for complete healing for Brandt, and for patience and trust for me!!

No more drain!

Well the snow from home made it all the way to Charleston today! I headed to the hospital early to make sure my Mom could get on the road in good time...Brandt had a good day with minimal fussing and short naps...said goodbye to my menfolk again:-(But I am so thankful for the happy Christmastime we had together, and hopeful to be headed home the end of this week as well.

Dr. Bradley came in later in the afternoon and pulled Brandt's drain. He reports that the healing in the incision still looks good. Brandt certainly didn't enjoy the procedure but I hope he has a more comfortable night with one less tube sticking out of him!

Even before he got his drain out he was back to his happy self today...I continue to marvel at how quickly these little ones heal from such major trauma. I was happy he was able to wear a little outfit on Christmas day, but the sleeves agitated his PICC line, so today we were back to just a diaper. We do NOT want to have to get that PICC line replaced. Dr. Bradley commented on how grabby he is with his incision site...he's all too happy to "help" with his bandage changes.

Merry Christmas!!

7 mos old--worn out from Christmas excitement.

With monkey Norwood Glenn Fontan III.

Thank you to our wonderful nurses for a Merry MUSC Christmas!

Merry Christmas + Happy 7 mos birthday to Brandt! Had a wonderful time with our family together...so great to celebrate our Saviour's birth and His salvation. After our traditional Christmas story and gift opening -- interspersed with non-traditional hospital life -- we tried to find a place to eat Christmas dinner. We had called a couple places we knew would be open, but didn't think to get reservations, and found "no room in the inn." So after wandering around Charleston for a while, we discovered an open Hardee's. Again, certainly not a traditional Christmas dinner, but one we will never forget!! The nurses were very understanding of the special day and let the boys show off some of their "treasures" including running little Zu Zu mice through the nurses' station.

We also stopped by the ICU to visit some friends there...One of the families had set up Christmas in a box with homemade goodies all around, and even got little gifts for each of the kids+siblings they had met there in the waiting room. They also had a carol sing right in the ICU which we missed, but it really made an impression on me to see their joyful spirits while their little one has struggled on for weeks and weeks in the PCICU with multiple challenges in addition to his heart.

What an outpouring of God's goodness...another family from very near our hometown also got to discharge and go home today--Glenn had gotten a chance to pray with them earlier in the week and we hope to keep in touch with them once we all get home. Dr. Bradley checked Brandt's incision again today and decided to leave the drain in a little longer. While there is not a huge amount of fluid, he said it doesn't hurt to let it keep draining since we're here for observation and antibiotics anyway! We are all for anything that keeps the site clean and sterile... Brandt's white blood count came back as 9, which is fantastic. He slept on and off through the night for my Mom, and seemed to be feeling somewhat better. He sure enjoyed playing with his wrapping paper and new toys!

My dear sweet mother offered to stay one more night at the hospital with Brandt, another huge Christmas blessing for me. She and Glenn and the boys have to head back home tomorrow, so I hope she'll be able to catch up on rest after helping me catch up. The boys are hoping the snow we actually got at home will still be there! It figures, the first white Christmas there in 27 years and we are out of town...I will miss all of them but feel so encouraged by the blessed family time together on this special day of the year.

Christmas Away from Home

But sleep was not to be :-( Brandt had a really rough night, waking up constantly, seeming to be in pain, wanting to be held. I felt so bad for him...knew he HAD to be exhausted. Even his pain meds weren't really helping. The nurses thought it was just because he's old enough to know he's not in his home environment, or that maybe he was teething, but he's generally still very happy even away from home. He did finally sleep 3 or 4 hours in the early morning, and seemed more comfortable as the day progressed.

The day being...Christmas Eve Day! Our older boys had done really well accepting that we had not had time to make plans for a big celebration away from home. They even seem to understand that others here have children more sick than their brother. We opportunity and blessing to let the boys use some of their Christmas money to pick out a gift for one of the very sick babies in PCICU and just include his mother in our Christmas Day plans. So imagine our overwhelming gratitude when we had strangers who had heard we were here come to carol the boys with gifts, stop by our room to pray for Brandt and bring gift cards, and then family and friends reduced me to tears by sending my Mom down with a beautiful little tree and carefully chosen gifts and goodies for us to have a Christmas away from home. Some of our church group also cleaned the house really thoroughly, which will be a huge relief--though somewhat embarrassing given the chaos of the last month--when we get home.

Dr. Bradley came to check Brandt's incision and wanted to leave the drain in...not a huge amount of fluid, but just as a precaution. The incision continues to heal well, which is great news. Since he's been so fussy, they will check his white BC again tomorrow morning just for an internal indication on what may or may not be going on. We don't expect a lot of variation on that, though, given the antibiotics he's on.

I've included a couple pictures of the cozy hospital room decorated with some of this generosity. The boys opened a couple gifts since they were so excited, and then I took my Mom up on her offer to stay with Brandt for the night so I could catch up on some sleep--Glenn had offered as well, but it was nice to be able to get some time with him and the boys together before they had to leave in a couple days. In addition, he and Seth were fighting some sinus drainage that I didn't want to turn into a full-blown cold. Looking forward to a joyful day tomorrow!!

8D

We spent the first night on recovery uneventfully...Brandt slept pretty well and continued to nurse but still refused the bottle. So Thursday morning after some sleep and getting his meds into him--he has about 10 medicines he's taking by mouth, and had started a trend of throwing them up for the nurses--I tackled the bottle with him.

One of the oral meds he's taking is Nystatin, which is supposed to help prevent thrush forming in his mouth since he's on such strong antibiotics. He's getting Gentamicin through today, which will complete a week of that IV treatment. His Vancomycin will run another week, and as long as he seems to be healing without any recurrence of the infection, Dr. Bradley is hopeful we can go home without the PICC line or anything. But the nurses and I were wondering if his mouth is sore because of these strong IV meds, and that's why he's become adverse to his other oral meds and bottles. Of course the side effects of all these drugs raise huge questions in my mind as to the long-term effects, but when I spoke briefly with some of the cardiologists about them, it seems we really don't have a choice. The pertinent problem right now is the infection, and even if the antibiotics were causing other problems, or will cause them in the long run, we need to use them...

So I gradually introduced some breastmilk in a bottle with one of his favorite nipples from home, and throughout the day, he did accept small amounts from the bottle. He's continued to have good diapers--sorry for all the gory details but it's part of the hospital world, yes they weigh every single one here--as far as urine output, but hasn't had a bowel movement since Sunday. :-( I feel if he can take some formula to supplement the milk I'm making it will help him be able to go to the bathroom. In addition, he'd lost a little weight when they weighed him for admission to the recovery floor, and he's already on the small side.

He was quite happy all day, but not wanting to sleep at ALL. By midafternoon he'd slept only about 45 mins and I thought, well, maybe that would help him have a good long night of rest. When the doctors came to his room for their daily rounds, they said they would do their best to make it as much like he was healing at home as possible. For this I am VERY thankful.. the staff here are so kind and thoughtful for the most part, but this floor is notorious for interrupted sleep at night.

Even though I explained to his night nurse that I really felt like it was important to let him sleep and that I would come get her whenever he woke up to eat, she said I had to wake him up at 11pm to give him meds. So we got vitals then, but she still felt it necessary to shake me awake at 4am after I'd already been up with him several times to remind me it was time for vitals again. I told her I would come get her--as previously discussed--when he woke up, and tried to go back to sleep myself...only to have him wake up at 4:30...grrrr. His IV machine also beeps at high volume whenever it finishes a dose of the medicine, then has to run a flush, then beeps loudly again for the nurse to change it back to the regular heparin flush that keeps his PICC line open.

When I discussed all this with the drs., they said we could do no vitals after 8pm, yay!, take him off the constant monitoring system, and just do spot checks of his BP and saturations. Great news- because trying to untangle him from all those leads and get him out of the bed every time he needs to eat is quite a production. He's still attached to the IV and the drain, but that's a breeze compared to the rest of the wires! Also they said by the time he goes home he may be able to get off all his lasix. He has been on this since birth, so I would be thrilled to reduce the number of meds he has to have on a long-term basis.

So late afternoon he started to get really fussy, then he made a dirty diaper--hooray! He fussed most of the evening, and still had not slept more than 45 mins all day. He seemed very uncomfortable and was crying whenever we moved him, pulling at his incision and grunting when he breathed. I asked the nurse to go ahead and give him some pain meds, and thought surely he would be worn out enough for us both to get a good night's sleep.