My name is Sherri. My husband Matt and I are so proud of our 2 great kids who joined our family through the blessing of adoption.

Micayla is our oldest and she has DiGeorge Syndrome. She was diagnosed before birth. She had her first heart surgery at 9 days old. It's been rough at times but she is doing great!!

I created this blog as a place where families dealing with VCFS can link together to share our trials, triumphs, fears and dreams.

Along the left hand side here you will see a list of families/kids that are dealing with VCFS, if you would like to be linked there please comment with your link or email sherriwj@msn.com If there is something that you would like to post please let me know.

Wednesday, August 20, 2008

What to ask for at your child's well-check appointments.

We all know that our VCFS kids are pretty special people!! This is especially true when you are visiting the doctor. Did you know that there are some specific lab tests that we should be making sure are done every year?

This link has a great chart that you could print out and take to your doctor at your next appointment.

Tuesday, August 12, 2008

This looks like a great site with tons of information!!


ABC's Private Practice to discuss DiGeorge

I was doing some online research and discovered that the show Private Practice will be addressing DiGeorge Syndrome in what looks like the 6th episode of the 2nd season. Here is a brief synopsis

Monday, August 11, 2008

A little about Micayla

Born: November 30, 2002

1st heart surgery at 9 days old to correct an interrupted aorta, ASD, and VSD.

Perforated colon at 19 days old

Home from the hospital at 10 weeks

2nd heart surgery May 13 2005 to repair sub-aortic stenosis

Starting kindergarten now in 2 weeks!!!!

Micayla's Story

This is the story of how Micayla joined our family. Certain names have been changed. We are LDS. There are parts of this story that are religious. Some of you may have already read this story on my other blog Kaysville Momma

Matt and I got married in 1995, I was 20 and he was 21. We had no specific plan as to when we wanted to start having children - other than the fact that I wanted 4 kids. Because my parents had fertility issues, I was hoping to have them before I turned 30 - because I kind of figured that if I was anything like my mom I would have to have a hysterectomy at some point.

In May 1996 we decided that it was time to stop using birth control and to "just get pregnant". Sounds simple enough right? We started hoping and planning for a baby. We even bought a crib.

Month after month after month went on with no pregnancy. There were several times "we were sure" but the stupid tests were always negative. I was always so upset about it. I literally felt my heart break whenever we had a friend or a family member announce they were pregnant. We kept on just trying. Every time I went to the doctor they would have no answers for me as to why I was not pregnant.

In 2001 we decided to get an appointment with the Fertility Clinic at the University of Utah, the wait time for an appointment was 7 months. In the mean time we decided to go to LDS Family Services and apply for adoption.

In October 2001 we started the application process. There was quite a bit involved. We had to have background checks, interviews alone and as a couple, Bishop's recommendation, health exams, take classes, reference letters from friends, have a home inspection, answer about 100 essay questions individually, write a letter to birth families, and do a scrapbook collage of ourselves....

We were finished with all of our paperwork and home study on December 21st 2001. Yes I remember the day well. That is the day that our caseworker came to our house and made sure it was a clean, healthy, and safe environment for a child. Then after this we had to wait for about 3 months before we were approved. Several caseworkers have to go over the file and then they meet together to approve couples to adopt.

In February we had our appointment with the Fertility Dr. at the U. After going over tests from both of us we were told that there was pretty much no way that we were going to get pregnant. We were given a couple of choices... 1) Use donor sperm combined with invitro...expensive...chance of me getting pregnant 25% - chance of carrying a baby 30% 2) Proceed with our adoption plan 3) Buy a boat. As much as we loved to water ski and fish, we chose to continue with our adoption plan.

In March 2002 we received a phone call telling us that our adoptive file had been approved. Now our letter and collage would be sent to the 12 agency offices in Utah. The offices all have a giant book full of the hundreds of families waiting to adopt. When a Birth Mom is ready to choose a family their caseworker goes through the book and selects families for her to look at based upon likenesses. Some Birth Mom's look at 2 families others may look at 20 or how ever many it takes until they feel that they have made the right choice. Of course there are no guarantees but we were told the average wait time was 6-18 months.

Over next few months I busied myself by being part of Families Supporting Adoptions. This is a way for families to help each other through this trying process. We had BBQ's and get togethers. I also volunteered a few times at the Agency.

Another thing that happened over the next few months is we received several phone calls about possible babies. Our caseworker called us about a few in other states. He also asked if we would be willing to have our file shown in Chicago, Georgia, and Michigan. He told us that there was a great need for families to adopt African American babies. This is something that we were very open to. After this conversation we were fully expecting to be adopting an African American infant or sibling group. We also received phone calls from friends that, "knew someone whose cousins friends mom" or whatever needed to place a baby. We tried to not get our hopes up.

It was also during this time that we learned the unfortunate truth about how some adoption agencies are basically selling babies. I spoke with an agency, I don't even remember from where that went over pricing of different babies with me. It was so sad to hear that white babies and bi-racial babies were so "expensive" while black babies "cost less". I told them that I wanted to adopt a baby -- not buy a car.

Even though we had not been waiting very long the stress of waiting was really taking its toll. At times we questioned whether or not it was worth it. We discussed the boat...

A hot sunny August day we were on our way down to the Utah Fire Academy. We were stopped for fuel when my cell phone rang. It was the Birth Parent Caseworker from our Agency. I got in the car to talk to her. She told me that there was a baby that she wanted to talk to us about. She told me of a little girl that was due in December. The Birth Mother was divorced and had two little boys, one of which was severely handicapped. She told us about the genetic condition that the Birth Mother, her son, and the unborn baby girl had. She told us that she wanted us to research the disorder, talk to our doctor, and pray about whether or not we wanted to be considered for this baby.

It took me about 20 miles of freeway time before I was able to even talk to Matt about it - I was speechless. I had a strong feeling that this was our baby and that if this was the child that our Heavenly Father had planned for us - there was no way I was going to turn my back on her. Before we even made it home I called the Agency back and told our caseworker that we wanted the Birth Mother to consider us.

When we got home we started researching VelcoCardioFacial Syndrome. Initially we learned that there were 3 main issues that could be attributed to VCFS; heart, palate, and some facial abnormalities. When we dove deeper we found that 1 in every 2,000 people has the chromosomal abnormality of VCFS and that there are actually 180 different issues that could be resulted from VCFS. We still were not afraid....

But, the weeks started going by and we hadn't heard anything. I started trying to get back to normal - not thinking about this baby every second of every day. Until one day I just couldn't take it anymore. I called our caseworker and left him a message. I told him that I just wondered how Susan was doing, that she was on my mind a lot and I wondered if she had made her decision. I didn't hear back from him, so we just assumed that he had no good news for us.

One evening in October I was co-hosting a Families Supporting Adoption event at our case workers house. Matt was at work. We had made our introductions and every one just started snacking and chatting. Our case worker came and sat by me. Jokingly I told him that I was mad at him because he was avoiding my phone calls. He apologized and told me that in fact he was avoiding me. Susan had made her decision and they were just waiting for her to bring in an announcement letter to give to the family she picked - he said this in a straight mellow tone. Then he told me that she had picked us.

“What did you just say?” Tears filled my eyes. He told me that we should expect to get the actual announcement letter/package from Susan this week. Oh my gosh!! My next question, “Can I use your phone?” I had to call Matt. “Oh please oh please let him be at the station and not out on a call.” Trying to contain my tears of joy and the sounds crying I told Matt that he was going to be a daddy. He told that I needed to come to the fire station so we could be together. I went and told our caseworker that I needed to leave. He was surprised that I was still there. Without saying goodbye to anyone else I left the party and drove (probably a little to fast) to the fire station.

That night we made some phone calls to share our good news with our family and close friends. Then we anxiously waited until Friday when we received a call that we had a package at the agency. Matt was again at work but my mom was back in town, we were out shopping and quickly went to the agency where I was given a box. I opened the box and found some baby shoes, a pink bear, a rattle, and a beautiful card announcing that our baby was due in about 10 weeks. There was also something in there that I never expected to have – ultrasound pictures of my baby.

The next week we had our first of two face-to-face meetings with Susan and her parents. Oh my gosh! I have never so nervous before in my life. I was shaking and my hands were sweating. We walked in the room and there she was. A beautiful woman with a round pregnant belly, pregnant with a baby that was going to be ours. Almost immediately my fears were calmed. We talked to her and her parents for almost 2 hours – although it seems like it was only a few minutes. She told us about her family and her boys. She told us how it was breaking her heart to give this baby up. She had always wanted a girl. She told us about her oldest son and his disabilities. We told her about our family, our traditions, our goals, and how extremely excited we were at the opportunity to be parents. We talked a little bit about VCFS and we felt good about it. They told us that the baby’s heart looked good and that they could tell that she did not have a cleft palate. We still understood that is was still likely that there would be some issues that we would be dealing with.

You know it was bittersweet. It was hard to be so happy while at the same time knowing that she was sad. She was in a way preparing her-self for a loss. Her parents were dealing with the emotions of giving up a grandchild. Here we were these strange people that they were trusting.

I should point out that this was a “closed adoption” we only knew each others first names. We did not exchange last names nor did we know where the others lived. They knew that Matt was a firefighter – but they did not know where.

We decided at the first meeting that we should meet again, but this time we should also meet her sons. So 2 weeks later we met again. Her sons were great! We took them some toy fire trucks and we played with them on the floor. Her oldest son was severely handicapped – but what was so amazing to me was his spirit. We played and visited for a couple of hours.

At the end of the meeting they left and the caseworkers asked us to stay for a few minutes. They wanted to make sure that we were prepared for whatever health issues that Micayla might have. We still felt strongly that whatever was to happen was the way it was supposed to be, putting all of our faith in the Lord and his plan. To us this was no different than if I were pregnant, there is always the chance that something could go wrong.

For the next few weeks we wrote letters back and forth. It was a great opportunity to share with her the things that we were doing to prepare for this little person soon to come.

Her caseworker called us 2 days before Thanksgiving and told us that Susan was being induced on Saturday. The plan was that she would be discharged from the hospital on Monday night and they were going to take Micayla home with them and then bring her to the agency for placement on Tuesday. Sounded good enough to us. We were told that someone would call us when she was born.

As you can imagine the next few days were full of excitement and anxiety. We did our best to busy ourselves and try and rest up before the baby came home. Thanksgiving was full of well wishes from family members. Although I have one person in my family, when I was talking to her about the baby and the possible health issues she asked, “If she is sick are you obligated to keep her?” What the HELL? I wanted to say, “You kept your kids didn’t you.”

Saturday November 30, 2002 was one the longest days ever. Matt had to work. I spent the day cleaning and making sure all of the laundry was caught up, I didn’t dare leave my house. At just before 7pm the phone rang. It was our caseworker. Micayla was born at 6:19 pm. She was 6 lbs 4 oz and 19 inches long. Everything went well and she appeared to be healthy. Yeah!!! Micayla was here and in just a couple of days we would have her home with us!

Sunday was an exciting day to go to church. We were able to tell our friends about the baby and share our excitement. Matt and I both bore our Testimonies in Sacrament Meeting. After church we went home for dinner and starting watching a couple of movies we had rented. Then the phone call came. It was our caseworker. He told us that the baby had been moved to the ICU. She was having a problem swallowing, she couldn’t keep anything down. He also said that she had a heart murmur. He told us not to plan on bringing her home on Tuesday. He promised that they would keep us posted on what was going on. I fell apart. We went to Matt’s parent’s house. His sister and her husband were there. We knelt together in their living room and Matt’s dad offered a family prayer on Micayla’s behalf. It was a sleepless night.

The next day was Matt’s last shift at work before he would have almost 3 weeks off, planning to be home with the baby. I stayed close to the phone expecting a phone call at anytime, praying for the best. At 5 pm Susan’s case worker called me. She told that Micayla’s condition was very serious. She had major heart problems. She was going to be transferred to Primary Children’s Medical Center at 7 pm. The doctor at LDS hospital wanted to talk to us before they transferred her. Robin told me to get to LDS hospital with Matt as soon as possible. Matt got permission to leave work and we got there at about 6 pm. When we walked in Robin told us that they had already flown her. She told us that Susan wanted us to come up to her room, she was about to be discharged and she wanted us to go with her to Primary Children’s to see Micayla. On the way up in the elevator Robin told us that this was now an open adoption. We would now know Susan’s last name and she would know ours. That was a bit freaky to us, but it was truly the only way the next few days would be bearable. When we got up to her room we were thrown another curve ball….. My aunt was her nurse.

We chatted with Susan and her mom for a while and they gave us tons of gifts for Micayla. Lots of clothes that people had brought and an afghan that someone had made. My sweet aunt came in with the discharge papers and we left one hospital for the other.

We made our way through the maze of streets in Salt Lake. When we got to the hospital Matt and I had to wait in the NICU waiting room while Susan, her mom and caseworker went to work out the logistics of how this all was going to work. You see the NICU rules are such that only family can visit the baby and until Susan signed the adoption papers we were just friends of the family. Only 2 people could be at the bedside at a time and one of them had to a parent, grandparents were also allowed to visit. After a little while they came to get us so that we could talk to one of the doctors – we still didn’t really know what was going on.

The doctor sat with us and explained 4 heart defects that they thought that she had. Thankfully Matt understood a lot more of this than I did. I just wanted to see her. I just wanted to hold her. After the meeting with the doctor they bent the rules for a few minutes and they let 3 of us visit the bedside, Susan, Matt and me.

She was beautiful!! Soft porcelain skin. Pale. Full of wires.

They only allowed us to stay for about 20 minutes. There were a couple of doctors and nurses working on her. They were getting her settled, doing lab work and monitoring her breathing. This was very overwhelming.

Before we left the hospital we planned what time to meet there again on Tuesday morning. Everything was so up in the air and we wanted to be there to hear what the plan would be for Micayla’s care. We gave Susan our home and both cell phone numbers because even though she had made sure to give the hospital permission to talk to us about Micayla although if they had any questions or needed approval for anything they would have to call her. This was hard for her. She wanted us to Micayla’s parents but until a few things were ironed out the Agency would not allow her to relinquish her rights.

We got home at about midnight. We were met at home by our parents. We filled them in as best we could. Then there was another sleepless night. No phone calls.

The next morning we met Susan and her mom at about 10am at Primary Children’s. My mom came with us. That was a long day. We had to meet with a social worker so that we could try to work out the situational details. We traded off spending time with Micayla and Susan at the bedside. We waited for someone to tell us more…. With all the tests and such that they were doing there was really nothing they could tell us.

Susan was tired. It was hard to put ourselves in her shoes. She had given birth to a sweet little baby that she wanted us to raise. There were issues involving the agency that at this point we were not even aware of. Susan wanted to go home to take care of her boys, for some reason at this point I didn’t even see that --- I am sure we were selfish, we wanted to be with our baby.

That evening her family came to visit the hospital. This was hard for them too. I know they were there to support her but they didn’t want to get attached to Micayla. We spent a lot of time with her family. We talked, they talked. This was definitely an open adoption. Matt’s parents and my dad also came that night. Again we got permission to break the rules a little bit, Matt and his dad gave Micayla a blessing.

On Wednesday morning we met again. This time Susan’s dad and sister came with her. We spent time with Micayla and we also met at length with someone from genetics. They talked to us in depth about VCFS it was at this time that we found out that in addition to VCFS Susan’s son had another disorder that was more of the cause of his major disabilities. They had checked Micayla’s brain and found no evidence of the other disorder. Is it bad for me to say that that was a relief?

Then early in the afternoon Susan’s caseworker came. She basically laid it out for us – Susan was tired she needed to go home. She was signing the relinquishment papers that afternoon.

We went home. Somewhere along the way something got lost in translation, no one from the Agency called us. We thought everything was done. So on Thursday morning Matt and I went to the hospital. We were not allowed in the NICU the case worker came out and told us that Susan hadn’t signed the papers. She told us that she couldn’t tell us anything other than we needed to talk to our caseworker. We had to leave the hospital – all we knew that day was that Micayla was still alive.

Matt called our caseworker – he yelled at him. I talked to the caseworker – this is where I lost total respect for him – he told me that this baby was going to break us. He said we didn’t know what we were getting ourselves into….. Uh yeah we did! What is the difference between this and if I would have delivered Micayla? – she was ours!! Why didn’t people get this? WE WANTED HER NO MATTER WHAT!!!

We then talked to Susan’s caseworker. She told us that we had to put it in writing and sign that we were taking full financial responsibility for Micayla’s care and that we knew that she might die. We went home, wrote, signed and called our insurance company to get proof that they would put her on our insurance. We went to the agency and presented it to both caseworkers. This is when we found out that Susan had wanted to sign the papers on Wednesday but our caseworker wouldn’t let her because he didn’t know if we could afford Micayla….. I am sure to some that might seem reasonable but to us it was crazy!!! Because Micayla’s outcome was so unknown – Susan’s caseworker had us work out a visitation plan for Susan and her mom.

On Friday morning, Susan was allowed to sign the papers. After she left the Agency they called us and we went in to sign papers and pay the remainder of our fee. Because of the medical bills the agency director substantially lowered the fee that we had to pay.

Friday afternoon – placement papers in had, we went to the hospital. It had been 48 hours since we had seen Micayla or heard anything about how she was doing or what they were planning. First we had to talk to the social worker and then we finally got to go and see our sweet beautiful baby girl. We were officially her parents.

When we got to Micayla’s bedside we asked to speak with the doctor. We wanted details, details, details. Since it had been 2 days since we had seen her or heard anything we wanted to know what they had been doing and what they were planning on doing. One of the Residents came and talked to us. She told us that they had completed the necessary tests that day and that she would be having open heart surgery on Monday. Oh my gosh! Can you imagine? Open heart surgery on a 9 day old baby.

That night our parents came again to see Micayla. My mom and I were at her side when she stopped breathing. They had to keep waking her up to get her to breathe. When they had done the MRI earlier that day they had to intubate her and sedate her. She was just having a hard time breathing on her own after that. They intubated her again that night. I was afraid to see her with the tube down her throat. Matt went and saw her first so he could prepare for what was going on. It actually didn’t look to bad – not like how they make it look on TV, plus tiny mouth = tiny tube.

Saturday we spent all day with her. I got to change her diapers and sing to her. They had to give her a medication to keep her “PDA” open. The PDA is the part of the heart that bypasses the lungs when the baby is in the womb then it closes soon after the baby is born. Her’s needed to stay open to help her blood flow and have oxygen. The medication they told us makes you feel achy all over – they likened it to the feeling of a sunburn and how it hurts to have anything rub against the skin. It was so hard to not rub her soft skin. She was still intubated and they planned on keeping her that way until sometime after heart surgery, her body needed the rest.

Saturday we met with the Cardiologist. He explained in pretty good detail the defects in her heart. She had an ASD (hole between the two atriums), a VSD (hole between the two ventricles), her aorta (the main vessel that transports blood to the lower half of the body) was interrupted (basically not attached at a point up near her neck), the Aorta came out of her heart and went right instead of left, and they needed to close the PDA. He told us her chance of survival was 60-80% --those are good odds right? But not when you consider that there is a 20-40% chance of death.

Sunday we had several family members and friends visit. Matt and I took turns escorting them back to meet our sweet girl. It was an emotional day, how do you prepare for what is coming? Matt and talked a few weeks later about the fact that we were both in our minds planning her funeral – we didn’t talk about out loud.

My dad brought their trailer down and parked it in an area of the parking lot set aside for RV’s. This became my home away from home for a while.

Sunday night the nurses and respiratory therapist decided that I should get to hold Micayla before her surgery. This was a daunting task for them. It took them about 45 minutes to get her ready and the whole time I held her the RT was right there just in case there was a problem.

We kissed her goodnight and went home knowing that we would be back early in the morning to see her off to surgery.

Monday morning we had to be at the hospital by 7:00 am. We were told that they would take her to surgery whether we were there or not. We barely made it. It was one of those terrible Utah Inversion Fogs!! We could barely see 2 car lengths ahead of us.

We got to the NICU just as they were getting ready to move take her for the walk to the O.R. We accompanied her as far as they would allow us to go. When they took her I fell apart. I could not and still cannot fathom how they can do open heart surgery on a heart the size of a walnut.

We went to the waiting room where we were assured that they would keep us posted. The surgical nurse practitioner came out several times to update us. At about 1:30 Dr. Hawkins came through the door. He sat down by us and told us that everything went great. He handed me a small square of fabric with a hold cut out of the middle. The missing piece is now a patch in her heart. He told us that they needed about an hour to get her stabilized in her new home – the PICU (Pediatric Intensive Care).

After many phone calls and lunch we went to see sweet Micayla. She was full of more wires and tubes than before. We counted 15 IV drug pumps. She was swollen. It was hard to see her that swollen. It seemed like she had 10 doctors and nurses that day, everyone looking out for her best interest.

Through that day and the next several it was watch and wait. I spent between 12-18 hours a day right next to Micayla. We had friends and family come to visit. The day after her surgery was Utah Jazz day. John Stockton and his son came and talked to me and took a picture with Micayla. Since it was the holiday season Micayla was blessed to receive many gifts, blankets and afghans from people that we didn’t even know.

On December 15th, the night before my birthday, I got a great gift. I got to hold Micayla for the first time since the night before surgery. I was so excited! She was breathing on her own, with just the oxygen tube in her nose. The gift that Matt and I wanted for Christmas was to be able to get Micayla well and out of the hospital before Christmas.

On December 17th she was moved out of the ICU and into the “Infant Unit” this was supposed to be the stop before we were able to take her home. She pretty much just needed to eat. We were prepared that she might be going home with oxygen and medications.

The infant unit was supposed to be so freeing after spending time in the NICU and PICU – but it was terrifying to me. First of all the roommate that we had had just been realized from isolation because she ahs whooping cough – yes that is right, although they tried to convince me that she was not longer contagious. Another worry of mine was that in both previous units we had a nurse right by the bed at all times! In the infant unit the nurses were not there very often. Because of the surgery and being intubated Micayla had no voice – so when she cried there was no sound – I was afraid to leave her side.

On the morning of the 18th they took out her feeding tube. Every time we fed her she would throw up. This was not just cute little baby spit up it was projectile baby formula across the room. After she would throw up she was always in distress. At first they said that she was just throwing up because eating was new to her – that seemed rational enough. But it wasn’t getting any better. They took her for x-rays and couldn’t see anything wrong.

By the time evening came – I was exhausted and I went out to the trailer to sleep for a few hours. When I came back inside in the morning (19th) they told me that she had had a bad night. She had pulled out her PIC line IV – these are pretty big strong IV’s that last a long time so that they don’t have to keep poking them. They really aren’t that easy to remove – have you met my daughter? They decided that they needed to put another one in – this time it was done surgically and stitched in so she couldn’t take it out. She also had a fever that day and she was still throwing up. After more tests and x-rays they decided that she had something wrong in her intestines that they needed to keep an eye on. They stopped feeding her with a bottle and put the tube back in.

Late that afternoon Matt came in and my dad also came in. Things started going down hill really fast. Micayla was clearly in distress. Her breathing was such that with every breath her chest was retracting. Her oxygen levels were dropping. Her color was really bad!! The cardio thoracic nurse practitioner was there, doctors and nurses things were CRAZY! The general surgery resident came in and told us that they thought her colon had perforated and that she was septic. She needed emergency surgery. Several times we heard from different people in the room “We are going to lose her.” I have never been so scared in my life!! The good Mormon girl in me knew that she needed a priesthood blessing. The nurse practitioner said that she could have a blessing but that it had to be quick and that they couldn’t get in the way. My dad and Matt snuck their hands in and Matt gave her what I imagine to be a beautiful blessing – I was crying so hard and in the arms of the social worker. I know that the Lord hears our prayers! Almost immediately after Matt said “Amen” the spirit in the room changed. Micayla calmed down her breathing improved and even the doctors and nurses calmed down. She was rushed to surgery.

Matt parents came and my mom was on her way home from her office in St. George. My dad had called her when things we found out she needed surgery – she drove from St. George to Salt Lake in 3 hours. We waited for what seemed like forever in the waiting room. I don’t really know how long that surgery took – at least 2 hours.

Once again Primary Children’s saved her life.

Dr. Downey came in and told us that she was heading back to the NICU and that he had removed almost a 1/3 of her intestine. Now the remaining intestines had to rest. He gave her an ileostomy which is basically a colostomy - they brought part of her intestine (about 1 inch) outside of her body. He said that in a few months they would be able to go and reattach everything. I really had no idea what he was talking about – but I soon learned that the ileostomy is where her poop would now come out. There was a plastic bag attached to her that would catch the poop.

We waited about an hour before they would let us see her in the NICU. It was very late. We kissed her goodnight and then Matt took me home – not the trailer – home.

This time Micayla only had the breathing tube for 3 days.

We resolved ourselves to spending Christmas in the NICU. Matt and I were talking about this just recently – although it was hard it was probably the best Christmas ever. We missed out on a lot of the bustle and focused ourselves more on the meaning of Christmas and the precious gift that Heavenly Father had entrusted us with. Santa visited the NICU on the 23rd and he held a weak little girl. She had now dropped more than a pound below her birth weight.

Christmas morning we went to Matt’s parent’s house for our traditional Christmas breakfast. We then went to the hospital. Matt’s parents and grandma came to the hospital for lunch. On Christmas the hospital provided complementary Chicken Cordon Bleu or Prime Rib for the families and their guests. That night we left and went to my parent’s house for dinner and then my parents went to see Micayla Christmas night.

The next week of recovery was hard. Part of the recovery included nothing in Micayla’s stomach for 10 days. She received all nourishment through her PIC line. She was getting a little stronger but she was so hungry. I was learning how to bathe her, clean her ostomy site and change her bag.

On January 3rd another problem was found in her intestines. This would require another surgery. The surgeons decided it could wait a couple more weeks and they were hopeful that they could repair her ostomy at the same time. But she would not be allowed to leave the hospital until after the next surgery. Also on the 3rd I was surprised when I got to the hospital to see her for the 1st time without any oxygen. She ended up going off and on it for the next couple of weeks.

Her next surgery was on January 21st. Less than 24 hours later she was off the breathing tube.

Our next battle was just getting her to eat and keep it down. This was a lesson in being an advocate for your child. In order to bring her home she had to eat all of her food by mouth and not through the feeding tube in her nose. We had to get mad at the nurses for not waking her up or taking the time to feed her. We also had to go through more tests and medications and they decided that she had reflux.

On February 7th I decided to take matters into my own hands to prove to the doctors that she could eat. I asked them if I they could move us into a room and let me stay with her for 24 hours to take care of her by myself. They agreed. That night we did her car seat check – she had to sit in her car seat for 30 minutes and not have any oxygen problems.

Then they moved us into a room just off the NICU. I slept (yeah right) on the couch and fed her and took care of her through the night. Everything went great and in the morning the nurse sent me home to get some sleep and the doctor told me to come back at 3PM to take her home.

It was a great day!!

Micayla was 2 ½ months old. She weighed 7 pounds 4 oz. She was tiny and she still is.

The last week of March we went to the adoption agency to meet with Susan. We had decided that since she didn’t really get to hold her and tell her goodbye nor place her in ours arms we wanted her to be able to have that opportunity. It was a great experience for us all.

In June 2003 we were able to finalize her adoption and take her to the temple to be sealed to us. These were beautiful experiences etched in our minds forever.

Micayla’s health has been great. She did have to have another open heart surgery in May 2005. Amazingly enough she was home from the hospital in just 2 days.

We are blessed to still be in contact with Susan. We exchange letters and pictures with her through LDS Family Services each year on Micayla’s birthday. We are so grateful for Susan and the wonderful gift that she delivered to us.