PCICU Day 1 Continued

Sorry for lagging updates ... didn't expect the activity level to be so non-stop the first couple days, but I've been trying to jot notes to bring everyone up-to-date as I can. I will try to organize the posts by date for some cohesion. Today is actually my first morning not in the hospital after discharge yesterday afternoon and I am missing my boy terribly. But we will be off to the hospital to see him as soon as the boys get up and about.

So to continue from our first opportunity to see Brandt, the ICU staff let us know that there was a bed available in the PCICU (Pediatric Cardiac Intensive Care Unit). I was thrilled to hear this, as all the ped cardiac team "hang out" there -- always at least one cardiologist on duty along with nurses trained and experienced specifically with heart defects. After an hour or so Glenn and my mom were able to go see him there . . . my legs still weren't working or I would have been right there with them, but I was so happy they could check on his status for me!

Whenever the unit admits a new patient or one coming from surgery they clear the entire unit of all visitors with a loud call of "we're rolling." This allows them to focus on the incoming patient to get his/her "nest" set up with all the necessary medication drips while maintaining the stabilization of all the stats they monitor. In Brandt's case, the ICU doctors had stabilized him with 2 catheters in his umbilical cord: the arterial line (UAC) which allows blood draws and the venous line (UVC) through which they administer meds. These lines are extremely sensitive, but a huge help in reducing multiple "sticks" to poor baby. Brandt's prostoglandins (meds to keep his ductus arteriosis open--which enables blood flow to the lungs after delivery) were already started through the catheters by the time he was in PCICU. Glenn and Mom let me know after their first visit that he was stable but with low BP and high oxygen saturation, which is typical due to the fact that nothing regulates the flow of the blood to the lungs once since he duct can't close. While they were there the cardiologists were performing a second set of echocardiogram tests to help determine more complete diagnosis and treatment/surgery plans. Glenn reported that Brandt did NOT like the echo, but he DID like to be swaddled and have his head rubbed. :-)

As SOON as my OB released me via wheelchair down to PCICU I was there! Contrary to our expectations, the "nest" was open with complete access to the baby, so we were able to touch and love on him as much as we wanted to, just no holding. The cardiologist on duty that evening approved us to hold him as long as he was stable, but almost immediately he started having scary breathing "episodes" where he turned blue right in front of us. His body just "forgot" to breath due to the prostoglandins, and his blood pressure numbers kept reading "soft" which we were told meant his chest line and cuff readings did not match. As a result they put off the "holding" time again. The nurse also told us almost all HLHS babies end up being intubated pre-surgery because of these exact problems--very typical of the medication side effects and mixture of blood flow in the "open duct" heart. We said goodnight to him with the nurse's reassurance that we could call anytime during the night, and that they would call if there were problems, but that unless the "episodes" decreased, he would likely be intubated by morning.

Brandt's Birth

Brandt's actual delivery was very smooth. Although the doctors moved my c-section earlier in hopes of not getting "bumped" for an emergency, we still had to wait through an emergency delivery and then a problem for the NICU staff. I was amazed at the coordinating to get the operating, anesthesiology, and NICU teams all available at the same time. But once they told us to "roll" I left for anesthesiology a little before 11:30 and they had him out by 11:49! I was the most awake for this surgery out of all 3 of my c-sections, and they held him up for me to see before they handed him away to the NICU staff. As a patient, I really appreciated the OBs talking to us throughout the process and letting us know how everything was going, plus they let me keep my glasses so I wasn't legally blind throughout!!

The stabilization room here is connected to the OR, and we could hearhis screaming a good part of the time. The doctors assured us that was a good sign for lung development, so it did our hearts good to hear that music . . . since he got to intensive care all of his nurses have already told us he has quite the temper and loudest set of lungs currently in the unit, but they are all happy to hear it as well. They said it will help any heart baby to have such a fighting spirit :-)

So they whisked him away, finished stitching me up, and then sent myself, Daddy and my Mom all back to recovery, where they brought him to us in an incubator. We could all touch, but not hold. He is gorgeous--sorry can't be objective. Even the pictures don't do justice to how soft and perfect and pink his skin was. We are all goners . . . they told us he had scored 9s on his Apgar and was breathing on his own. Had he not been diagnosed in utero, there would not have been much if any indication of the heart defect . . . absolutely mind boggling.

Brandt Ethan Markevich arrived 11:49am screaming his head off w/gr8 color no oxygen needed yet PTL. 6lbs 15oz!

Charleston

Last Family Pic with 4 Members!

We made it safely here and got all settled with an amazing welcome committee from Cross Bridge Ministries and Light House Church. The Altmans met us at the apartment armed with groceries and prayers, and we were able to meet other members of the Cross Bridge team at church and lunch on Sunday.

What precious time we had with the boys over the weekend before they headed back 'home' with the grandparents. My mom arrived tonight, and we check in bright and early -- well at least early -- for the scheduled c-section tomorrow morning. Barring any complications or reschedules at the hospital, we should have a new baby soon after 9am!

On the way . . .

We're on the way to Charleston this morning, ready or not! We'll get settled in and spend some time with the boys, plus meet some of our new friends at Cross Bridge Ministry on Sunday. Then Brandt's delivery / c-section has been moved up to 9am Tuesday morning the 25th. Please pray for wisdom for the doctors as they stabilize and observe him to best schedule his Norwood surgery.

On a VERY happy note, we got an "unofficial" weight estimate on Thursday, his last appointment. 3 times my sweet ultrasound technician weighed him at 7lbs 7oz yippee! That's for all the doubters out there :-) Or maybe from my friend's weight gain shakes!?! Anyway, the doctor assured me Brandt could not have gained 2.5 lbs in two weeks, and one of those measurements has to be skewed, yeah yeah. We're counting on the 7lb one!! Go Brandt . . .

Here's a couple pics of his nursery. It's not finished, but in good shape for him to make a quick recovery and come home with us! The bassinet was his Daddy's when he was a baby, and the quilt was handmade by friends of his aunt's in New Hampshire who do this for special needs babies. In fact the knitted blanket was specially made for him too -- lots of love for this little guy already . . . we love you Brandt!

Our Shepherding Group

We had ANOTHER amazing day yesterday thanks to our small group at church -- you guys rock!! And we will love to see any of you who can make it in Charleston...all of this PARTYING for Brandt's birthday --not even here yet --is building our excitement for and celebration of this very special gift from God. By the way, yes, I ate cake for breakfast this morning . . . along with my high iron high fiber cereal. Is that ok with everyone?!?

Lists...

As I've worked to complete endless lists this week -- certainly enough to drive my poor husband, if not myself crazy -- I have found my mind unwillingly going to many "What ifs?" So I decided to start a "definitely true" list instead.

FIRST of all -- God has abundantly provided. He's given me a wonderful loving supportive hard-working husband I just adore. My mother to come over and help me check things off my never-ending lists :-), and who would take all the unknowns and uncertainties of the coming weeks far away if she could. My sister to attend long doctor visits and answer analytical medical questions for me -- in the middle of launching a permanent medical missions transfer to Africa over the next couple months, no less. Amazing in-laws willing and able to watch the boys during doctor appointments and surgeries as needed, or get them back and forth to Charleston. Two employers willing to work with us through a severe physical hardship. Brother and talented writer sis-in-law sharing, ordering parts for, and ASSEMBLING crib so I can see baby nursery put together before I leave. Dear family and friends offering to come for surgeries, make meals, share baby equipment as needed, mow our lawn, help with the boys, watch our dog, you name it. Church family gathering for send-off prayer for Brandt. Co-workers texting encouragement and offers of help. Neighbors and school families bringing send-off gifts and baskets for baby and our family. STRANGERS, but family in Christ, providing extended housing, a church home away from home, meals, groceries . . . um COUNTLESS cards, e-mails, texts with spiritual strength and wisdom that is most important of all through this trial.

To share a few of these truths I've read or encouragements I've been sent over the past few months since we found out about Brandt's condition and SECOND in my "definitely true" list: God doesn't have to provide . . . He already IS everything. We attended a timely class at our church discussing how to teach your children about suffering. As usual, we parents needed the lessons more than the kids at this time, most likely! But the instructor shared a quote from Oswald Chambers:

"The things we try to avoid and fight against - tribulation, suffering and persecution - are the very things that produce abundant JOY in us. Huge waves that would frighten the ordinary swimmer produce a tremendous thrill for the surfer who has ridden them. 'We are more than conquerors through Him.' In all these things - not in spite of them, but in the midst of them. A saint doesn't know the joy of the Lord in spite of tribulation, but because of it."

From Fearless by Max Lucado:

"The Canaanite mother. The father of the epileptic boy. Jairus. These three parents form an unwitting New Testament society: struggling parents of stricken children. They held the end of their rope in one hand and reached toward Christ with the other. In each case Jesus responded. He never turned one away.

His consistent kindness issues a welcome announcement: Jesus heeds the concern in the parent's heart. After all, our kids were his kids first. 'Don't you see that children are GOD'S best gift? the fruit of the womb his generous legacy?' (Ps. 127:3 MSG). Before they were ours, they were his. Even as they are ours, they are still his.

We tend to forget this fact, regarding our children as 'our' children, as though we have the final say in their health and welfare. We don't. All people are God's people, including the small people who sit at our tables. Wise are the parents who regularly give their children back to God."

And another friend challenging me regarding Scripture memory as it applies to our everyday life mentioned Psalm 121 (NIV). So the boys and I have been working on that chapter, and what inspiring thoughts!

"I will lift up my eyes to the hills-- where does my help come from? My help comes from the LORD, the Maker of heaven and earth. He will not let your foot slip -- he who watches over you will not slumber; indeed, he who watches over Israel will neither slumber nor sleep. The LORD watches over you -- the LORD is your shade at your right hand; the sun will not harm you by day, nor the moon by night. The LORD will keep you from all harm -- he will watch over your life; the LORD will watch over your coming and going both now and forevermore."

Oops, I've written another book today . . . more later, but these TRUTHS fill me with hope and confidence . . . that's what a beacon's for, right? Thank you if you've taken the time to read this long record -- I know a printout of today's post will serve as a wonderful reminder to me to trust during long periods of waiting or uncertainty through the coming months.

Feisty Little Fire-Breathing Dragon

This is what the ultrasound technician called Brandt today for his check-up! He was happy as a lark in his pre-natal home, moving all over the place and making the most hilarious faces at us. One way they monitor his "practice" breathing is with a color-coded chart of blue for "breathing" inflow and red for "outflow". He had his best practice breathing day yet with strong flow both ways -- hence the fire-breathing nickname. So he's apparently content to grow, batter my insides, and prep for the real challenge yet to come as he enters this world to meet us next week.

Last Week before Charleston

"Cuddles" for Brandt in ICU

So my test blog from my phone worked -- Brandt passed his tests yesterday very quickly and I was able to confirm again with the specialist that we could do our last couple "checks" at his office and not leave early for Charleston.

I also got to meet another heart mom from the area -- how awesome is that? Her little man also has HLHS, but after both the Norwood and Glenn surgeries, just celebrated his 6-month birthday and is doing great . . . and what a cutie! It was really good just to talk with her and get some direct input on what to expect at the Children's Hospital and following surgery, and even some good tips on places to eat and take the boys there in Charleston.

Speaking of my two older scholars -- they completed 3rd and 4rth grades, respectively, this week! Looking forward to a week of fun with them. We had to change their school enrollment for next year until we can figure out what's what these coming months. So my sentimental self was teary about saying "goodbye" at least for now to a school where the boys have had excellent training. BUT we will all adjust to the changes, and God will grow us! Everyone has been extremely supportive there at school and we thank the faculty, staff, and other parents with sincere appreciation for their kindness.

Test from phone... brandt passed his bpp Thursday w/flying colors. No slow heart rates or decelerations!

Monitoring...

Long day today . . . @ the doctor's office (OB)for almost 3 hours again. Brandt's heart was showing accelerations today during his non stress tests -- like THREE of them -- but it was also showing decelerations and a slower-than-normal heart rate. It was in the 110s instead of his normal 130s to 150s. So finally they just did another ultrasound, and everything appears to be fine. But they FIRMLY told me they really felt I should be in Charleston already, as they are concerned about my going into labor here, and not wanting to have to airlift Brandt to Charleston. After due consideration and a call to the cardiologist office, we still feel we should hold off going early, based on the fact I'm not showing signs of pre-term labor, the boys are still in school, and the cardiologist on call is not concerned about stabilization if I would deliver here. So, we are STAYING PUT . . . with all due respect to my wonderful OB doctors!

Laughter the Best Medicine

So since laughter is the best medicine -- my husband is the greatest thing ever for both Brandt's and my health, right? For those of you who know him, he certainly keeps me smiling. You can only imagine the ways. This week it's been a pension for singing to me, well-known songs, but he changes the words, and I mean, I had to draw the line last night. True, my ankles and toes swelled up horribly this week, but I still don't think that warrants his comment to Brandt, "Son, did you know you are 'Bloatzart's Third Concerto'?" And then his rendition of Josh Groban's "You Raise me Up" last night when I was attempting to get my swollen feet and belly off the couch and he came over to offer "assistance":

"I'll raise you up, so you can get to be-ed,

I'll raise you up, to walk on swollen feet.

I am strong, but even with my muscle,

to raise you up is really quite a feat."

My only comfort is that he also regularly tells me I don't look almost 9 months pregnant, and that I need to eat more! Why do I have to hear this from everyone right now?

New Measurements

Brandt measured in today at an (estimated) 5.0 lbs! So he's gaining ground . . . we'd still like to see him make at least 7lbs by birth, but we're happy for the progress . . . he was also VERY active and completed all his breathing exercises quickly. Go Brandt!

Charleston Appointments and a Huge Surprise

My wonderful husband and I had a good trip to Charleston yesterday, for an understatement of the year. I dreaded the 7 hours of driving, and just didn't want to be in Charleston since I'm enjoying my time at home and with the boys so much, and was feeling so unsettled about our housing arrangements. Not to mention my directionally-challenged self trying to find my way around if at any time my "Mr. Atlas" happens not to be there when I attempt to navigate Charleston on my own. But wow did God turn all that apprehension around yesterday. . .

We met with an OB for a "pre-op" check for my c-section. Seems I've hardly thought about that part of the process of getting Brandt here, in light of what will happen AFTER he's here. But they pronounced him officially "full term" during this visit. He also passed his non stress test very quickly. (He has had twice weekly testing for the last couple weeks to check heart response, movement, breathing motions etc.) That made Mom VERY happy as he hasn't always been so cooperative, and I've gotten stuck at several appointments for hours on end.

The fact that he's now full term relieves a little pressure in case I would go into labor early--not likely given my past history however. Now all he has to do is GROW GROW GROW. Dr. Greig, the maternal fetal specialist here has me on restricted activity and tells me to eat eat eat. Any other time I would probably "dig in" with zest, but at the moment I find myself with litle appetite due to the scrunched quarters in my stomach region. Just saying, human nature is so contrary. But we really do want Brandt to get all the "chub" possible on him to help sustain him through the procedures after birth, so eat I will!

Next we met with a neonatologist from the NICU unit at MUSC. May I say I did not even know so many doctor titles existed before we began this journey? Please forgive any medical incorrectness in this summary -- it's not intentional! Anyway, apparently the NICU staff handles the stabilization of the babies directly after birth, even if they transfer from the stabilization room to the Pediatric Cardiac ICU (PCICU). That is what will happen for Brandt if the PCICU has a bed available after stabilization procedures, otherwise he will go to the regular NICU unit until his first surgery. But the neonatologist explained in detail how they will perform the normal apgar testing for newborns, and then get both an umbilical venus catheter (UVC) and umbilical arterial catheter (UAC) started. These catheters will allow blood draws for testing and immediate infusion of prostaglandin (PGEs) medication to prevent closure of Brandt's ductus arteriosus so that he can breathe after birth and until his first surgery. This will take about an hour -- Daddy will get to be present except during insertion of the catheters-- and then they will bring my sweet Brandt in his incubator to see me before settling him into the NICU or PCICU.

Once he's settled there, we can visit him in ICU -- the cardiologists will be working with him to get echocardiogram info for surgery and monitor his blood and oxygen saturation levels to help them determine when the Norwood surgery should be scheduled -- hopefully within a few days. We will meet with Dr. Scott Bradley, the cardiothoracic surgeon, once surgery is actually scheduled. The neonatologist we met with should be on duty the day Brandt is born, so it's likely she'll work with his stabilization. How comforting to know of the full staff of attendant and fellow doctors as well as nurse practicioners on duty 24 hours a day, and have a treatment plan laid out for him when he makes his first little mad cries in this world!

THEN, I got a phone call from an amazing contact at CrossBridge Ministries in Charleston, asking us to take a look at an apartment complex while we were there. Now please keep in mind I had only been given her contact information and e-mailed her one day earlier, and I mostly wanted to see if she might be able to help us find inexpensive housing. We have been blessed with offers of Ronald McDonald housing, a personal family's home opened to us through a contact at our church, and discounted hotel rates through services at MUSC.

But none of these would work for long-term or when we have the boys in Charleston. We were just going to do our best to juggle whatever worked from week to week based on availability/visitors/child help we had in town at the time. So, we decided we should at least CHECK into a rental. But no, Melissa at CrossBridge Ministries found and offered to us--within 24 hours of my e-mail to her-- a 3-bedroom furnished apartment for up to two months. I was still very confused and thought this was just an "affordable option", but this church ministry actually provides the housing free of charge for families facing long-term relocations/stays there at MUSC. She went on to say they would be "adopting" us in prayer and helping with food and child care and things I had not even thought of during our time there in Charleston. I was literally crying at how our God provides beyond all that we ever ask or think!!!!!

3 weeks to D-Day!

ANOTHER thumbs up from Brandt 35 weeks!

Mom with Baby Bump @ 36 weeks

Brandt's Thumbs Up at 20-week Ultrasound

Well, I am launching my first ever blog to keep friends and family posted on our little guy's status. Since little Brandt Ethan is due to make his grand entrance exactly 3 weeks from today, let me start by giving a brief history of his diagnosis and our experience with hypoplastic left heart syndrome to this point.

My husband, two older boys, and I were EAGERLY anticipating the 20-week ultrasound for baby #3 on Jan. 15 of this year. Mostly to find out if this was a girl or boy, of course, but also just for the older siblings to see the new life growing inside Mom. The technician did a great job including the boys in the original scan and sharing in the loud exclamations one way or the other when she announced this would be Boy #3 as well as Baby #3. But amid her description, she started asking odd questions regarding our family's history of heart disease, and we knew something was "off" when she asked if my husband could take the two boys back to the waiting room. She let me know right away she was pretty sure something was wrong with his heart, but that we would of course consult with the doctor as soon as she could look at the scans. Our doctor confirmed that while there was a possibility the pictures were just "blurry" at this stage, they strongly suspected a heart defect, specifically mentioning hypoplastic left heart syndrome (HLHS), with the possibility of "markers" for other abnormalities including down syndrome. Brandt, however, seemed determined to let us know things would be "ok." He gave us a very clear "thumbs up" at this original ultrasound.

Of course, our emotions were pretty much in shock, trying to process all the unfamiliar medical terms and implications of what they had let us know from what we thought was just a routine ultrasound. They got us in to see Dr. Grieg, a maternal fetal specialist here in our area, and he confirmed the congenital heart defect as well as discussing further options for testing to confirm or rule out additional defects. We decided at that point -- since terminating the pregnancy would NOT be an option, and that further testing would most likely not affect treatment options at this time, to decline further testing. Dr. Grieg's office also coordinated follow-up visits with a pediatric cardiologist who could offer additional diagnosis and treatment options based on echocardiogram information with detailed scans of baby's heart.

Following Dr. Rauniker's diagnosis of the HLHS with additional heart complications, we faced many decisions. This defect is fatal if untreated, as the specialists let us know right away. However, much progress has been made in the past 20 years to offer surgical alternatives to heart transplant. I began to research the program his office coordinates with at the Medical University of South Carolina in Charleston. The highly-specialized surgical and follow-up care teams there are among the best in the country. Combined with the follow-up of a specialized pediatric team here locally, the success rates for a structured surgical reconstruction of at least 3 surgeries have been very high. Dr. Rauniker, his team, and the MUSC team recommend this rather than transplant if possible due to a variety of factors. I have attached a link here to a series of videos done by the Children's Hospital of Philadelphia regarding HLHS -- I found them on another "heart mom's" blog, and they are very helpful.

http://www.youtube.com/watch?v=4zeKC7O8QpU

Overall, we have had a deep sense of God's plan in all of this, and peace that each step of the way He already knows. We chose Brandt's name in part because we both liked it, and in part because of its meaning "fiery beacon or torch." His middle name Ethan means "firm" or "steadfast" and we pray that this little guy will be just that -- a beacon of hope and firm confidence in God's goodness. Family and friends both have come around us with amazing support. I cannot even begin to enumerate the offers of help and kindness that have come flooding in, and he is not even here yet! Most importantly, PRAYER. Many around the globe have let us know that they and their church groups are holding us up in prayer. We understand the risks and challenges involved in both the surgeries Brandt will face and his follow-up care. And yes, they are mind boggling, still! But we know we are "more than conquerors through Him that loves us" -- how can we lose with a team like this?!?

Our first visit to MUSC March 10 confirmed our decision to go forward with Dr. Raunikar's treatment recommendations. The surgeons and doctors we met with there were amazing and thorough -- they confirmed the HLHS and "named" the additional defect as an unbalanced A/V Canal. This defect along with a microscopic aorta will pose additional risk with the first of the three scheduled surgeries. It is called the "Norwood" operation. The follow description of the surgery comes from an informational site sponsored by the Children's Heart Center at Johns Hopkins University.

In the Norwood Procedure, a major blood vessel to the body (aorta) is constructed from the base of the pulmonary artery and the narrowed aorta, indicated by the presence of the pink patch in the animation.In addition, a small tube made of Gore-Tex (known as a Modified Blalock-Taussig Shunt), is inserted between the branches of the pulmonary artery (PA) and a branch of the aorta to ensure blood flow to the lungs after the PDA closes.

Specifically to Brandt's situation, I will plan to deliver him in Charleston so we can stay with him after my required c-section until his first surgery is scheduled. I am not showing any signs of pre-term labor for which we are thankful, and the c-section is scheduled May 25. We do ask for your prayers that he will grow as much as possible between now and then . . . I have twice a week monitoring of his activity and growth. The last measurements estimate him to be just shy of 4 lbs, and we would love to see him go full-term and gain an extra 4 lbs before birth to help sustain him through all the testing and surgeries to take place his first week of life. The following is an excerpt of an e-mail update I sent out after we knew a little more what to expect from the surgeons in Charleston:

Before the c-section is even complete, the PCICU staff will stabilize him and start extensive tests including catheters placed in the umbilical cord. Within two hours of birth they will medicate to keep his arterial duct open and get a direct echocardiogram. The surgeons feel by two days they’ll ensure his condition is operable and finalize surgery plans, for no later than 4 to 6 days after birth. He won’t be able to eat at all before the surgery, and may have to be on a ventilator. We can hold him the morning of surgery only. During surgery, he’ll be on heart and lung bypass (life support) machines, and possibly afterward, depending how it goes. Dr. Scott Bradley (with amazing credentials and experience to his record according to my research and everyone's testimonials) will perform the surgery. Brandt’s chest will be open 24 to 48 hours after to watch the extreme swelling, fluids and possible infection. Then, they can gradually introduce feeding tube breast milk to activate his gastro system. Most hypoplastic babies struggle to eat. The heart team there want him able to go home as soon as possible, but the rehab from surgery and medications still requires a minimum of four to six weeks. Some babies have to go home with a feeding peg (inserted into the stomach). And quite honestly some can’t go home between the first and second surgeries at all. The second surgery would be scheduled around 4 to 6 months of age. So we earnestly pray for miraculous healing!!

OK, enough already of my first post. Hopefully this blog will be a great way to keep everyone who is interested up-to-date without writing a whole book on a regular basis!