Five Years Ago

Five years ago on July 8th we were heading to the International Barbershop Festival that was being held in SLC that year. We were both excited. I'd been introduced to barbershop through Kyle in high school and had so inducted Michael into a love of the general stuff. The extra excitement came from his opportunity to perform that night with the BYU Men's Choir at the Festival itself. We had told his director that the only way we were missing it was if I was in labor. I was due the next day, but we'd had no indications that the baby was coming so we were on our way! We had a great time that night and arrived back home very late to find that a work crew had come, done some renovations, and left a mess of cinderblock dust all over the baby room.

We woke the next morning to contractions, but continued through the day to clean up the baby room as we had no idea of how long to expect things to take before Bekah was here. Hannah was in town and was helping me do my laundry as we timed contractions. By lunch time they were much more intense. Joseph and Eli dropped by to say "hi" only to find me arching my back in a cat-like way on all fours in our living room to try to relieve the labor pains. We had been in touch with my parents throughout the morning. At about 4 p.m. my dad advised us to head to the hospital to be checked. He would start heading down from Star Valley where he was with his brothers and my grandpa. My mom was already on her way with the two younger girls.

They admitted us to the hospital and I was already dialated to a 5. The next few hours are a mesh. Michael ran home to get a bag together and Hannah stayed with me in the hospital. She kept me laughing - that's what she does best - relieve stress with humor. But there's nothing quite like having your husband at your side during labor so I was glad when he got back. My mom had gotten in town and all of us were huddled in my delivery room for a time wondering what the next few hours would bring.
I got my epidural and was much happier after a few minutes. :) I began pushing but it was evident after a few pushes that Rebekah was in a lot of stress for some reason. Each time I'd have a contraction her heart rate would drop down to the 30's. That's incredibly low for an ADULT. The doctor was worried and decided to use forceps to try to get her out faster. Thankfully, I'd kicked everyone out but Hannah, my mom and Michael. So the delivery began. All I remember was Bekah crowning and the doctor saying, "You need to wait out the next contraction. She's under a lot of stress." I looked at him like he was crazy!! He allowed me to go ahead and push under the circumstance that I pushed her out. YES SIR!!! I did. I also tore quite a bit so I was in shock as they were cleaning her up. My mom went hysterical with the camera and nearly got herself kicked out by the doctor. Luckily, Michael told her to wait outside just before the doctor got to her. :) Bekah was very pale after they cleaned her up so after a brief time holding her, they whisked her away to run some tests and get her some oxygen.

About three hours later my dad had arrived and we were discussing the whole process when the attending pediatrician came in to tell me that the x-ray tech was pretty sure that Rebekah had Tetrology of Fallot. It wasn't verified, but they felt strongly that she needed to be taken immediately 50 minutes north to Primary Childrens Medical Center (PCMC) for tests. I think I held it together just long enough for the doctor to exit then fell apart as I held Michael's hand and looked to my dad for answers. He told me that Tetrology was very rare and that it was unlikely Rebekah had it, but that we would have to wait for a specialists opinion and test results. I was beside myself with confusion. I just had my fist baby. Wasn't this supposed to be the most wonderful experience of my life next to my marriage? Yet I was in a ton of pain, stuck in a hospital and my baby was being taken from me. They wheeled me up to the NICU to hold her one more time before they life-flighted her up to PCMC. I could hardly see through all of my tears. What did all this mean and what would it lead to?

Besides not being able to see my baby for the next two days, they were pretty uneventful. We did find out the next day that Rebekah did have Tetrology of Fallot. This was a condition in which the bottom chambers of the heart did not have a wall to separate them. The oxygenated and un-oxygenated blood were mixing and sending only partially oxygenated blood through the body. We also found out she had Pulmonary Atresia. This meant that somehow the pulmonary artery failed to make a full connection from the heart to the lungs. In Rebekah's case, her artery was very small and unable to perform it's function and a small portion of it never formed so that her heart was missing the connection to the lungs. She wasn't getting sufficient oxygen in her blood in the first place and then it was mixing in her heart to dilute it further. My bishop came by to see me after he heard something was wrong and the ward was asked to pray for us. My grandpa had traveled back shortly after my dad and came to see me. That was the last time I saw him alive. He died less that two weeks later.

After what seemed like an age, I was released from the hospital. I went home to change and immediately went up to PCMC to see my little girl.

I was so humbled to enter that NICU. Bekah looked miserable to say the least, but when I looked around at all the other little patients, I began to count my blessings. I could hold my baby. Though she had open-heart surgery looming over her, she was full term and everything else was functioning properly. Besides being pale and pasty, she looked perfect. Because of her full term status, the doctors could perform her surgery. I cried a lot. I prayed a lot. I counted my blessings a lot and felt pretty confident that she would make it through this surgery alright. The only time I ever doubted was the night before her surgery. We were checking into our hotel for the night and I panicked. What if she didn't make it tomorrow? Would I hold her for the last time? What had caused this malformation in my child's body?! Why MY child, Lord? What was I supposed to learn? and was there some crash course that I could do within 24 hrs and get my girl a free pass through or around this surgery? The form I have to sign for consent to perform the surgery involves a possibility of "death" - how possible is that?

Michael held her for the first time when she was 5 days old and was just about to go into surgery.

I felt horrible when I finally realized that. Very selfish of me. And I couldn't get over how selfless he'd been by always letting me hold her - I married a wonderful man. That's love for ya. We checked into the waiting room and waited, and waited, and waited. Our day began about 6 a.m. and she was finally out around 3 p.m. They told us that they'd left her chest open to account for swelling of the heart and that they would close it the next day if things looked good. I felt fortunate that they were able to do just that. The surgeon talked to us afterward and showed us what her artificial tube looked like and how small it was. I was truly humbled and amazed.
Her recovery time in the hospital was about a week and a half. We took her out of the hospital only to attend my grandfather's funeral the next day. Well....we didn't sleep very well that night. She kept us up with a fever most of the night. After the funeral we went to the doctor to get her checked out and ended up back in the PCMC emergency room and were checked back into the hospital. She stayed there another 3-4 days. I remember getting an email the day after she was checked back in about a friend who'd also had their baby. He was healthy, he went right home and I cried. Why did our little girl have to be in the hospital AGAIN?! Why couldn't she be healthy? But deep down I knew there was a reason that God had in mind and I needed to find out what that was.

We never did find the reason for the fever. They discharged her again and she grew in health, mind and body for the next 8 months.
On final discharge day. They gave her an NG tube because she'd lost so much weight. She wore it for about 3 weeks until she pulled it out one night. Fortunately for us, she'd gained enough weight that we didn't have to put it back it. For those who have never had to put one in, count yourselves fortunate. I'd put it up there with top forms of torture for infants. You feel like a TERRIBLE parent...

Eight months later. (She looks so much like Andrew to me.) It was the eve of her second surgery. They had her in for a cath lab procedure that afternoon as part of pre-op and decided to keep her in the hospital overnight since she was the first patient the next morning for surgery. This time I actually had to give her up to the surgical team and that was harder. But the waiting itself was easier. I think the Lord gave me the confidence to know that she was going to be alright through this one. This time they were going to fix her heart - not just her arteries. That meant stopping the heart for a time and there is always a risk when doing that that it won't start up again. I was nervous for that part. Through the cath lab they found that she had grown another artery out to her left upper lung and they were set to redirect that so that all of the "plumbing" was correct. By doing so, her upper left lobe collapsed a few days later and caused complications. She was oxygen for quite a while after this surgery. I felt like we didn't ever really get rid of it for a full year. Again her recovery took two weeks in total. She got the weird fever at the end again that kept us a few days. It was during this time that I had the distinct impression that we needed to have Patrick sooner than later for her sake. It took some convincing for Michael, but he believed me in the end.
I know this is a little numbing and scary to look at. But we felt it was important to document so that we might "remember" as the scriptures are always telling us to do. "Remember" all that the Lord God hath done for you and your fathers - kind of thing. Seeing all of these pictures again fills me with gratitude for what we've been through, the blessings we've received as a result, and for where we are now.
During her stay, they started having a therapist come to work on her lung. They would thump her back in a certain fashion that was supposed to help the upper lobe open back up and allow her to cough all the gunk out. I'm now an expert at thumping to help with bad coughs.

Slowly and surely she began to fail. The tests month after month came back dismal and although she'd grown to a good 18 lbs. by eight months, she didn't gain any more until she was 22 months.
This is the first birthday picture with cake around the mouth. You can tell that though she's grown, the weight she had has simply stretched with her and she hasn't gained anything.

At her 18 mo. mark. She is paler than usual - I can see that now and so very skinny. Bless her dear little heart. It was just working so hard to keep her alive! We struggled and fought to keep her around 18 lbs. We laugh about it now, but her cardiologist put her on a Haagen Dazs ice cream diet. "One bite for Bekah, two bites for me!" :) It's scarier to look back on it now than it was to go through it. She was seeing her cardiologist, a speech therapist because she wasn't eating hardly anything (too many bad experiences with her mouth = "I don't want to eat anything. I just want my bottle".), and going to the FUN clinic - a nutrition clinic at PCMC for children failing to thrive for whatever reason. (The FUN stands for something but I can't remember what. It's not really supposed to be irony.) I got really good at remembering doctor's appointments. I think I would have been more worried if she had not been my first child. I had no other experiences to compare to.

The artificial wall they had installed between her ventricals was tearing apart and her body was rejecting the human artery that they put in to replace the tiny artificial one. The doctors knew she wasn't doing well and needed another surgery so they scheduled one for March 1st. Then she caught RSV and was admitted on January 31st of 2007. She was 18 months old and I was 5 months pregnant. I cried a lot for the first few nights. We didn't want to be apart, but the hospital only allows room for one parent to sleep in the room unless someone wants to sleep in the rocking chair. (!!!) So we fooled the system with some advice from some friends of ours - we stuck an air mattress in the bathroom. Technically they couldn't keep us from doing that. Most of the nurses decided to look the other way and though it proved to be a long 10 days, we were together. She failed to really "get better" but they eventually let her go on the pretense that she would do just as well at home and it would save us the money.
Bekah got a hold of Michael's tie one night and decided that SHE was going off to work this time. :) She got the NG tube again for night feedings of Pediasure to help her gain weight. I believe that she went up to 22 lbs. on that stuff, but we sure had a lot of messes when she pulled it out in the middle of the night!!! I did have to put this one back in a few times and I'm now an expert. As soon as you get the thing in take out the wire or they gag!! :) I was optimistic, but I think a lot of that came from feeling like things couldn't get any worse.

They pushed her surgery back to March 23rd and we were back to square one. When we went in for pre-op stuff on the 22nd they took one look at her and said, "She's not going in for surgery tomorrow" and then checked her into the hospital again. This time it was just bronchilitis. That's basically RSV without the actual virus. Same symptoms. I was much more prepared this time around. I was much happier. I knew the drill. I remember praying for the other kids in Rebekah's hall who didn't have their mommy's there to hold them or stay with them. Praying for the kids who didn't want to stop crying for whatever reason. I was filled with much more gratitude. I think that's why the Lord saw fit to cut this hospital visit short. We only did 5 days time and her surgery was rescheduled again to be April 19th.

Third time's the charm! She was finally able to have her surgery! This time around they were going to repair her heart again (hoping it would take)The hardest part about her surgeries for me was seeing her when she was still intubated but starting to come off of the extreme pain killers. They would tie her arms to the side of her crib so that when she was awake she wouldn't start pulling tubes and wires out. She would look at me with pure panic in her eyes and start to cry but nothing would come out because the tube in her throat that was helping her breathe was preventing her vocal cords from working. I would cry for her and try to be as reassuring as possible. I felt horrible! I'm sure she thought I was a traitor. I'm realizing that she didn't smile tons for the camera through all of this. It's a little depressing to see that.

Just after losing the ventilator. I would guess that she was relieved to get her binki. It's amazing what a sense of familiarity does for little ones. They are so resilient, but they are very comforted by any sense of routine and happiness that they get in times like this. She would light up any time we'd come and the nurses would do their best to keep her own items near her.
Checking her bear's heart rate with the doctor's stethoscope. It was one of the few funny moments amidst all of the trauma. I'm still humbled by the fact that through all of this she is a happy little girl. There have been social side-effects, but she's not scared of doctors. She doesn't like shots just like any other kid. But she is positive, upbeat, curious, brave, innocent, loving, and courageous. Heavenly Father blessed her with a very special spirit. I think He blesses all His children that have to go through similar things with an extra dose of love and courage. They/she is a truly remarkable miracle to me! I feel blessed beyond measure that God has entrusted such a special spirit to my care. She has taught me so much in patience, love, kindness, and endurance.

These were taken about a month out of surgery and only a week after Patrick was born. She's looking so much better to me and so happy. She's always liked being outside.

Four months later they found that the artificial wall in her heart was tearing again. I was flabbergasted. What more would she need? They told us they could do another open-heart, but that there was another option. It was on the experimental side, but they were pretty positive it would work. So in August the doctors met with Bekah for a cath lab. They would enter through the veins in her groin, use cameras to get up to her heart and put a "plug" into the tearing wall.

(a) the wires holding her rib cage together until the bones fuse together.
(b) her heart
(c) the device itself. technical name: Amplatzer device.
(d) the tube squirting dye into her system

The device was normally used for holes between atriums but they felt it would work the same between her ventricals. In effect it was a special metal equivilant of a foam ear plug that you twist, put in your ear and it then expands to fill the space. The Lord knew our hearts. Although He knew we were willing to go to any length for our daughter, he knew we needed a break. The device worked. The leaking between the ventricals of her heart has become minimal. Her oxygen levels now normally sit in the lower 90's. That is nothing short of a miracle to me. She began her life sitting in the upper 70's if she was having a good day. That meant that her blood only had 70% of the oxygen needed for her body.

She's been surgery-free for three years now. That is a miracle. I remember looking forward to the day when she wouldn't have a procedure for a full year - now it's been three. She is a blessed little girl and we are so blessed to have her as part of our family. She starts kindergarten in less than a month and I'm humbled that we're already here. She's been through so much and we've been right there with her through most of it. I hope that I can live up to the wonder/reputation that being the mother of such an awesome little girl demands. Looking at her makes me KNOW that there is something greater in me. The Lord has entrusted so much to me with her. I love her. She is my daughter and a lovely, blessed, beautiful daughter of our Heavenly Father.