Heartbeats

Chuga-chuga-chuga-chuga. As a pregnant mom-to-be, the sound of a baby's heartbeat becomes familiar and reassuring with every doctor’s appointment. The first time you hear it, its sounds so odd – too fast to be a heartbeat. But with each appointment, you get to the point where that little chuga-chuga is the most beautiful sound in the world. Heartbeats, both big and small, have been on my mind all week this week.

My heart broke this week as we learned news about our friends, Brad and Lisa. They welcomed little Field into the world on June 14. Soon after his arrival, they learned that Field has a congenital heart defect and will undergo a series of three surgeries - the first at 4 weeks, the second at 6 months and the third at three years of age – to reposition the arteries in his heart. Field has been in the NICU at Methodist Hospital all week but was welcomed home late yesterday afternoon. He is a beautiful little boy and the faith, determination and strength that his parents have shown have been an incredible lesson to me. What a special friends for our family to have! The Nugget and Field are sure to be friends and will know what a miracle their lives are by the scars they will bare. I ask that you keep the Johnson's in your prayers as they prepare for Field’s first surgery.

On the Nugget front, I am now seeing the perinatologist once a week to monitor her progress. We had a growth measurement test on Monday and she’s still measuring small – now in the 13th percentile. As I’ve said before, these measurements are based on her abdominal size so aren’t necessarily true to her actual size. During the ultrasound, Dr. Higby (Dr. Gordon’s partner) seemed to focus an abnormal amount of time on her heart, checking and rechecking. Chuga-chuga-chuga-chuga. As we’ve now confirmed, Nug’s heart is growing in size and is about 60% of the size of her abdomen (remember, this is a small abdomen). Since the blood flow to her liver and other organs is abnormal, her heart is pumping extra hard to get blood to the necessary areas. This extra work is causing her heart to enlarge. If the heart continues to grow and continues to pump excessively, this could lead to heart failure. We will continue to monitor her heart closely and, should they detect heart failure, will need to deliver early. Each doctor keeps telling me, the main goal is to get me as far along in this pregnancy as possible. With an omphalocele this large, early delivery could be harmful as we’d add extra problems to the Nugget’s list. My heart is hoping that we make it to August 4 and that this little baby stays tucked in my belly until she is as cooked as she’s going to get. Please pray for that sweet, little chuga-chuga and that God develops her heart to be strong and viable.

Now Nuggalicious and I had a little discussion before the ultrasound started. We talked about her stage presence as the cameras begin to roll and, low and behold, I think our little mother-daughter chat worked. I’ve included a few of the pictures from her time on camera, one of her profile and the other of her foot. Can you make out those precious little details? I must say, I think she’s beautiful…but maybe I’m a little biased.

We were happy to have Dad and Julia and my little brothers, Parke and Nathan, come for a visit this last weekend. I can’t believe Parke and Nathan are getting so big! As a four and five year old, they are full of energy and are looking forward to the arrival of their niece.

We head to Lake LBJ today to spend time with the entire Boswell clan. Summer lake trips have been a constant in my life and one of my favorite parts of summer. We look forward to this weekend each year and will relax, laugh and have fun with all of the extended family. Its hard to believe we’ll be adding another body to the growing family this time next year! But rest assured, I will take it easy - no boating or jet skiing for me. Once again, the pregnant lady will continue to float.

We continue to be comforted by your emails, calls, texts, prayers and positive thoughts. We are constantly amazed by the strength of our support system out there and are thankful for each and every one of you. I hope you are all having a wonderful summer!

Love to you all,

Brooke

2 Showers, 2 Appointments and a Nursery

The house is finally feeling settled and I feel like I can rest. Unfortunately, I think I’ve pull a back muscle with my crazed obsession to get it all done (I do believe that would be “nesting” I’ve heard so much about) so you can imagine the last few days have been spent lying down on a heating pad. I’m feeling better today but, rest assured, I will be taking it easy for a little while.

On Sunday, June 6, the Ha-Ha’s threw a baby shower but, this time, it was a grandparent’s shower with Mom and Steve and our dear friends, Cindy and Dennis Knocke, as the guests of honor. They are the last two Ha-Ha’s to have grand babies so it was a fun afternoon with a Dr. Seuss theme. Amanda and her husband, Patrick, were able to come in so we had both grand babies-to-be in attendance. Amanda is due just two weeks before we are so “Little Spice” and “Nugget” are sure to be fast friends…just like their sweet grandmothers.

This past Saturday, it was Nugget’s turn to be honored again with a San Antonio baby shower. I had family members drive in from Houston, Midland, Granger and Georgetown to celebrate the Nug, along with our friends here in San Antonio. Thank you to everyone who came to celebrate her upcoming arrival and to our fabulous hostesses for making it such a fun party!

Yesterday, Jared and I had a morning full of doctors’ appointments, starting with the perinatologist, Dr. Gordon. It was a quick appointment with an ultrasound of the Nugget, followed by monitoring her heart. Her heart was strong and doing exactly what it should be and Dr. Gordon said all looked good and stable. I’ve determined she’s a little camera shy (unlike her mother) since she had her head buried in my hip bone. Not ideal for a cameo - we’ll have to work on that one! She was completely stretched out from her head in my hip bone to her feet in my rib cage. This sleeping position is clearly inherited from her father who loves to stretch out and take up as much space as possible. No wonder I’m feeling a little like Sigourney Weaver in Alien – this kid loves to stretch!

After meeting with Dr. Gordon, we headed over to Methodist Hospital to meet with Dr. Alex Kenton, the head of the NICU at Methodist Children’s Hospital. We were able to discuss what our time in the NICU will look like, as well as tour the facility. I think you have to be a special person to work in a NICU because every staff member we came in contact with was compassionate, caring and eager to help. We also met Susan Caster, Director and Head Nurse of the NICU. Both Dr. Kenton and Susan gave us their personal cell phone numbers to reach with any questions or concerns we might have. While it was sad to see that we’ll be spending so much time there as opposed to home with our sweet little girl, it was comforting to meet the amazing people that I’m sure we’ll get to know so well. Again, we were happy to know that we’ll all be in such good hands after August 4.

The main purpose and goal of Nugget’s stay in the NICU will be to have skin grow over the omphalocele and hopefully reduce the size of the omphalocele, as well as increase her abdominal size for her final surgery. Infection, both of the omphalocele and at the IV entry points, tends to be the leading cause of problems. Dry surfaces are ideal but many of the skin growth stimulants keep a wet surface on the area and wet surfaces harbor both bacterial and fungal infections. You can see where there has to be a close eye on the process and why there isn’t necessarily a “best method” to fix an omphalocele. By the time she comes home, the omphalocele will have a strong covering on it so we won’t need to worry about being too delicate with her prior to surgery but this also accounts for the expected 6 month stay in the NICU. Dr. Kenton, again, stressed that this will be a long process and that we’ll have our ups and downs but we were happy to know that we’ll be surrounded by such a great staff.

And as requested and promised, I will now show off my inner-Martha and introduce you to El Cuarto de la Nuggita. I got a little teary last night thinking that it will be some time before she can sleep in her own room but I’m so happy that she’ll have such a cute little room to come home to when its time.

On another note, I just got off the phone with Mom and Steve and Steve just had another clear brain scan! Praise the Lord! This is his first since being completely off chemo so I’m just filled with joy at the fact that “Grandy” will be part of Nugget’s life where as two years ago, we didn’t think this was a possibility.

I also want to wish a very happy birthday to Field Johnson who made his debut yesterday afternoon. Congratulations to our friends Lisa and Brad! We look forward to future play dates.

As the summer heat starts to take its toll, our new neighborhood has a pool so the large, pregnant lady will spend her time sprawled out on a floating raft. I’m off to float.

Love to you all!

Brooke

Updates galore!

We have a date! A delivery date that is. I met with our OB, Dr. Cox, today and have officially scheduled our c-section for Wednesday, August 4 at 7:30am. Its hard to believe that our nugget will be here in 8 weeks and life will be completely different for Jared and me. We're both excited, anxious and a little scared all at the same time.

I'm sorry its been so long since my last update but life here in San Antonio has continued to be a little hectic over the last few weeks. First and foremost, the moving truck arrived on Memorial Day! I was convinced we wouldn't see our belongings ever again but Jared remained hopeful. I think he was just trying to balance out the crazy pregnant lady he had sleeping on an air mattress! After being told on Wednesday, Thursday, Friday, Saturday and Sunday, "the truck will arrive tomorrow", it finally made its debut on Monday. On arrival, they tried to charge us even more money before unloading the truck but that crazy pregnant lady came out of her shell and we were able to avoid that little swindle. Jared helped the two movers unload the truck and after 5 hours and working twice as hard as either of the movers, he was exhausted but we had our earthly possessions back in sight. So much for a holiday! We had some minimal damage but everything was accounted for so we were happy to see that truck leave.

The house is starting to feel like a home and a HUGE thank you to Mom and Steve, Cindy Knocke and my aunt Bonnie for all of their help. We could not have done it without them! If you know me, you'll know that I'm not one for playing the pregnancy card, almost to a fault. Our helpers and my husband have kept an eagle eye on me since I keep thinking its nothing to try to move a 200 lb piece of furniture on my own. The baby's room was the first room almost complete since her furniture was the only thing we owned not traversing the Southern US via moving truck. The glider arrives tomorrow and then her room is complete! I'll post house/nursery pictures this week. Rooney and Kitty are feeling very comfortable in their new digs. Rooney is really loving his new back yard and has even been caught frolicking in the grass when he thinks no one is watching.

Besides moving, we've had our fair share of doctors appointments and they'll only get more frequent from here. I've already reported on our appointment with the new OB, Dr. Cox. On Friday, May 28, we met with the new perinatologist, Dr. Gordon. Dr. Gordon is very knowledgeable and we feel comfortable in his hands. We got a long look at the nuggster during his ultrasound exam. Her omphalocele has now been classified as large to giant and is a little larger than 1/3 the size of her abdomen. It still includes her entire liver and most of her intestines. Dr. Gordon said its not the largest he's ever seen but it ranks up there...awesome. He's dealt with a number of omphaloceles and is currently handling 5 so we're confident with his knowledge. Dr. Gordon referred us to Dr. Robertson, the pediatric surgeon, and set us up with Dr. Kenton, head of the NICU at Methodist Children's Hospital.

On Wednesday, I met with Dr. Roberston to discuss surgery and the upcoming outlook where that's concerned. Needless to say, it was pretty deflating. The road outlined for us was alot longer that what we were originally anticipating but also serves as a reminder that we have to keep up our hope and faith and know the Lord is in control. Dr. Robertson said that there are a number of ways to treat omphaloceles, which means there's not a proven best method of treatment. Due to the size of her omphalocele, the surgery won't be immediate to avoid crowding her other organs and causing respiratory problems. The nugg's body size is still measuring small since it's developing without those organs inside of it. We can anticipate about 6 months in the NICU where a membrane will develop over the omphalocele sac. After that we'll bring her home. The omphalocele will remain herniated until surgery which could be anywhere from 1 - 3 years of age. Dr. Robertson said to expect alot of abdominal scarring and a very long and rocky road ahead. Can you see the deflation from where you're sitting? All of this being said, there's a blog network of omphoalocele moms with some truly amazing and inspiring stories so I'm going to keep reading these and keep my spirits up.

After a long talk and some tears, Jared and I are going to continue on the path we've started on - planning for the worst and hoping and praying for the best. I am reminded every day that the Lord has put us in San Antonio and with an amazing support system of family and friends. Our new home is 7 miles from Methodist Hospital and we have no doubt we are exactly where we are suppose to be. I've said it before and I'll say it again, our nugget will be perfect for us and has already made us better people and our relationship stronger. I could not do this without such an amazing man in my life and I'm so excited to see what a great father Jared will be.

Thank you to everyone for your phone calls, emails, thoughts and prayers over the last few hectic weeks. Our next appointment with Dr. Gordon is on Monday, followed immediately that day with Dr. Kenton and a tour of the Neonatal Intensive Care Unit (NICU) at Methodist Hospital. Now that we have internet up and running in the house, I will be more diligent about my updates and promise to post house/nursery pictures soon.

Love to you all!

Brooke