California McMillans

Inch by inch, Tyler is progressing. He had his post-op MRI which revealed no changes as compared to the preoperative hematoma (a collection of blood beneath Tyler's skull). That being said, it appears the surgery didn't affect his brain circulation and that the formation of the hematoma was due to child birth. Tyler has been learning to feed from a bottle and his bowels are working, so when he gets really fussy, we suspect he has left some treasures in his diaper. His skin looks great and when he wakes up, he looks all around. Today, they'll teach us how to insert the nasogastric feeding tube in case Tyler pulls it out. He is still having some drug withdrawal issues. Scott is gearing up for Tyler's arrival by pushing around a doll in the stroller, making sure the doll has his binky. If things continue to go well, Tyler could come home on Wednesday. Thanks for all your comments, prayers, cards, and support! Tyler has been a positive influence on many.

Tyler moved from the PCICU to the transitional ICU yesterday. His heart is doing well and his irritability is getting better. He is trying to learn how to feed from a bottle which is a little difficult. Starting to feed at 3 1/2 weeks results in mass confusion with swallowing, breathing and sucking all at once. He spit up most of the food yesterday, but I am sure he will get it little by little. We are so proud of our little fighter. He is doing so great and his oxygen is in the 80's where they want it to be. Grammy has been taking good care of Tyler, which has allowed me to spend some time with Scott who I really missed when I was at the hospital so much. They will be doing the brain MRI tomorrow, which will be really informative to see the differences from his post-operative MRI. We are keeping our fingers crossed it comes back normal. He appears to be very responsive and alert which is great. The doctors are hoping he will be able to come home early next week. Keep us in your p

Tyler is rocking the PCICU (pediatric cardiology ICU) and rockin away in Grammy McMillan's arms. It is so great that Danny's mom could come out this week. It has given me some time to be with Scott who has missed and needed his mom and dad after a 2 week absence and get the house in order before Tyler comes home. We now have clean carpets and now in my closet I have clothes that fit me instead of maternity clothes. Tyler does great when he is rocked and held and as soon as you put him down gets fussy. Scott, Danny, I and especially Tyler are so grateful to have Grammy's help!! He is off his methadone even though they think he might still have some drug withdrawal, up to 12 cc/hr of milk, on room air oxygen levels and doing great! They are planning on moving him to the transitional ICU soon and if all goes well will probably be home in about 1 week. We will be celebrating having him here for 1 month. He has been such a joy to us and such a little hero to so many. It is am

My mom is in town from Utah. She spent the night at the hospital last night and has been holding Tyler quite a bit. He really enjoys being held, so he's less fussy and has responded well to the weaning of the oxygen. He's on regular air, but I guess it's still the high-flow to keep his lungs inflated. He's up to 9 cc's of food per hour, an improvement over yesterday's 2 cc's. The picture is of Betty and Bob Maddox (Heather's in-laws), Jacquie Lietz (Heidi's mom), Heather Maddox (Heidi's sister), and Walt Lietz, Heidi's dad. They did a 5K walk to raise money for the American Heart Association. Thanks to all who donated on behalf of Heather and Tyler!

Tyler is continuing to do well. He got out 2 more chest tubes and they will probably take out the last tube tomorrow. They removed the line going directly to his heart which allowed us to hold him today. Yeah!! It was so wonderful holding him and he loves being rocked. His lungs started to collapse which is common for inactive babies who have been on a respirator for long periods of time. The doctors placed him on high flow oxygen again and started respiratory physical therapy that usually helps the lungs expand. His lungs looked better on an x-ray in the afternoon which is great. They stopped feedings when they took out his tubes and lines and will hopefully start them up again in a day or so. Overall he is doing well. The major concern is getting his lungs and breathing more normal. Thanks for your prayers and love. He looks so good without all of his tubes. Nothing compares to being able to hold him again. All our love.

Onward and upward for Tyler. Today we visited him in the afternoon and he was on regular oxygen at one liter/minute. He began taking Heidi's milk at one cc/hour through a nasogastric tube, which is about the volume of game dice. Three of his thoracic drains were removed and his breathing appears normal. He looks great! And he looks really long. He has lost most of his fluid which makes him look very skinny compared to before. Hopefully he'll be able to start eating a little more each day and gain some weight. We enjoy hearing all of your comments on the blog. Thank you, thank you, thank you!

A big word for taking out the breathing tube. It's an even bigger step, though, because Tyler looks much better. Now he's on high-flow oxygen at 35% (air is 21%), and the high-flow is to pump up the alveoli. He's breathing at a normal rate, so today, they'll wean him from the high-flow oxygen to a regular oxygen machine. One of his thoracic drains was removed, and the others aren't filling up as much, so they'll remove those soon too. Apparently, he's been in some drug withdrawal since morphine and fentanyl were stopped, so they'll give him methadone to help him cope. I think they give heroin addicts methadone. In medicine, you never know anything for sure, but it looks like we may be in the home stretch of the pediatric cardiology intensive care unit. Yeah! Ah, and they mentioned that he might not be able to cry because of the breathing tube. I asked if his larynx was damaged, and the nurse acted like it may or may not be permanent. I thought, "Gre

While Heidi was with Tyler at UCSF, Scott and I went with Walt and Jacquie to Tilden Park where we rode the merry-go-round, the train, and fed the animals. You'll see all of those pictures on pics from the didge at the end of the month, but here's a little preview.

They closed his chest Monday from around 5:30-6:30. The surgery went well. Danny and I got to the hospital around 9 and he didn't look too good. He was very blue/grey and there was a lot going on to try to stabilize him. Everyone seemed very concerned, as were we, since his heart was having a hard time pumping to his body. His oxygen saturation was in the low 70s. We weren't sure if he was going to make it, but hopeful that he would fight through this. I saw him around 3 AM and he looked sooo much better. The nurse said that she felt he was on the fence earlier, but was much more stable now. It is a hard surgery to recover from and hard for his heart to get used to pumping against his chest instead of it being open. They said that the surgery begins the recuperation all over again. One step at a time. He is precious. Looks just like Scott through all the tubes when he was a newborn which is fun to see. Scott is doing well. We are SOOOO grateful for everyone that has helped and

Tyler is a fighter. We visited him today and he perked right up at the sounds of our voices. We took some pictures, then let him be, because he likes to squirm when we're there and that's not too good for all of his tubes. He's urinating, and they're optimistic about that because they want him to lose fluid so the chest can be closed tomorrow. Dr. Azakie has another Norwood procedure tomorrow, and then he'll close Tyler's chest. We feel very blessed to have him in our life. Thanks for your continued support and prayers.

First night off the circuit went well. No major updates which is a good thing. His heart made it through the night without major assistance, so that's great! They will probably start weaning him off the heart meds. We will see. Thanks for your prayers and love.

Tyler is doing well.  They started bridging him off the circuit at 9 and took him fully off about 4 hours later.  He has done well and his labs look good.  They are keeping him paralyzed to relax and not move much with his chest.  His heart meds are pretty high and they are going to leave everything how it is through the night.  If he has a good night and everything looks good, they will start to wean him tomorrow from some meds and allow him to wake up a little.  If everything continues to go well, they hope to close his chest Sunday or Monday.  It depends on the swelling.  Hopefully shortly thereafter they will be able to wean him from the ventilator.  All the nurses and doctors are telling me how sorry they were for the other night.  Tyler gave everyone in the ICU quite a scare.  Hopefully no more of that.  We are optimistic that things will go well.  He is hooked up to a lot of sensors on his brain that a neurologist will look at to see how his brain function is doing from the ot

The surgeon and team have been optimistic about Tyler coming off the heart/lung machine. They wanted his heart on the machine to get the rest it needed, however, not too long that it became a crutch. The staff started a bridging process from the machine, such that the blood still cycles through the machine, but the heart does all the work. Tyler has been maintaining his heart function for the past hour and the bridging process will last for a few more hours. In case his heart does fail they have the ability to quickly have the circuit take over. The staff will be taking blood gases and labs to see how his body is responding, so hopefully his heart will show that it is stable enough to work on its own by the end of the day. Once he has been weaned from the machine is a little scary because there is always the chance that his heart could stop again. We are optimistic that it just needed a rest and he will be on the road to recovery. We are grateful to realize that it is out of our hand

Tyler was doing great. Danny and I went to visit with my mom and sister after work. They said his heart meds were down which means his heart was doing most of the work. Everyone was so impressed with how strong his heart was and how well he was doing. I stayed with him and everyone went to eat and he flat lined around 7pm. It was really scary to see the baby have no pulse and no blood pressure. Chaos broke out in the ICU yelling for surgeons and meds that I didn't even know what were for. It was so scary and I felt so helpless to see my child go into cardiac arrest and be able to do nothing for him. I got Danny and we just stood there realizing it probably wasn't good for us to go through this, so we left to wait in the waiting room. For the first time, I thought what would I do if he flat lined when I was home....I don't know if I can do this. Danny and I didn't know if Tyler was going to make it and this might be it. We wanted more than anything for him to just be

Tyler's surgery went well. I brought him down to pre -op with the nurses and he was looking so good and so cute. The anesthesiologist went over everything with me again. All the risks and complications. With that being said he also said that Tyler was in his opinion with the top surgeon in the world for Norwood procedures. He was in surgery until 4:00. The surgeon called and he said that everything went well. His heart rhythm and function was looking good after surgery. They reconstructed the aorta through donor tissue since it was too small. They placed a synthetic conduit from a hole that they made in his heart to I believe the PA. He was excited that there weren't heart fibroid in the way that allowed him to make the tube go directly into the heart which isn't always possible. He felt really optimistic. Surgery went well.

Danny gave Tyler a blessing this morning with two of his dental students from UOP . It was quite touching and I know will help him so much. He blessed him with a fast recovery, adequate monitoring of his hematoma before, during and after surgery, that his bowels would resist hunger, his limbs would stay warm, he would be still during recovery, understand that the pains he goes through are in his best interest for a good long term prognosis and that he will be a beacon of faith and hope to all. We are so grateful that the Lord is able to bless Tyler through the priesthood. He has been doing really well today.

Tyler is almost 1 week old. He has become cuter and cuter each day and is looking so much like Scott as a baby. He is precious and we feel so blessed that he is at such a great hospital with the opportunity to have surgery. I was talking to a cardiologist visiting from Turkey yesterday who said that almost anywhere else in the world wouldn't have surgery options. In Turkey they don't even have PGE let alone pediatricians qualified to care for them after surgery. It sure makes you count your blessings of where you live. Tyler is doing well and we are excited for his surgery which will be tomorrow morning around 9. The doctor has 2 surgeries today that he won't postpone because Tyler is very stable. He wants him to have 1 more day for his lungs to strengthen and his subdural hematoma to be monitored. They are a little concerned about the hematoma . The neurosurgeon said that although it is very common from childbirth it is the largest he has seen which is a conc

Tyler is doing well! Yeah. He loves being held and we love holding him. He is a little uncomfortable from the pge and not being able to eat but calms down quickly. The most important thing is that his heart and lungs seem to be doing well. We accepted to participate in a study that tracks neurological effects from infant cardiac surgery. Since cardiac surgery is so successful UCSF is starting to look at other effects of surgery. Tyler qualified due to a level 1 hematoma and the doctors were most likely going to do an MRI today to see the location, size and implication of his hemotoma prior to surgery. In this study they will do a pre -operative and post-operative MRI as well as developmental tracking at 1 year and possibly sooner if needed. I didn't have my camera but they have an infant mri incubator that was quite a futuristic looking large bed. The neurologist will be able to give us a good sense of how, if any, the surgery affected his brain as well as how he is doing in th

Thank you to all who have supported us through prayer, thought, and kind words. It's Danny talking now--I have been humbled by all of your goodness. Heidi, Scott and I went with Heidi's parents to UCSF today to spend some time with Tyler. He's doing well, and they don't have too many updates. When I came home, I read your emails and your comments on the blog and it made me feel good. True, this is a tough time, but we feel so blessed to be surrounded by so many caring people. I know that Tyler is a bringer (is that even a word?) of hope. We feel so lucky to have him in our lives. Danny

Danny and I left the hospital Thursday afternoon not being able to do much for Tyler who was having a hard time which was so hard. We just needed a break and needed to spend some time with Scott. We came home and Scott lit up our day. He and Danny washed the motorcycle , which was the cutest site! Scott would take towels and scrub every little part of the bike. He loves doing whatever Danny does. I see the future ahead of me with boys (Danny included) doing all the boy things that were non-existent in a girls home growing up. We went back to the hospital Friday afternoon and were welcomed with a peaceful, happy little guy awaiting us. Tyler was taken off his breathing tube and not struggling with his breathing. He loves being swaddled and it was so great to see him resting. The nurse commented on these little noises he makes when he is sleeping which was exactly what Scott did. They are so cute. We were able to hold him which was the best feeling. I just treasure having him in my arms

We met with a cardiologist who showed us some of the 150 pictures they had from his echo. He said that from his viewpoint he thinks that the left side of the heart would not be able to sustain life and trying to close the AV canal could mean inadequate oxygen to the brain and other major organs. The surgeon who specializes in hypoplastic hearts is on vacation until Monday and has a similar surgery Monday and possibly Tuesday. If Tyler does fine through the weekend, he will most likely have a modified norwood procedure on Tuesday or Wednesday. They like to do these surgeries when the child is 7-10 days which allows the body to get rid of some fluid they have, strengthening the lungs and a being stronger than right after birth. Dr. Anthony Azakie is one of the top surgeons for hypoplastic hearts and we have heard so many great things about him. We feel so blessed to be at UCSF. We asked about down syndrome and the doctor said that AV canals are common with downs but disproportionate

Danny tried bringing Scott into seeing Tyler and he did much better and just kept waving to him. Scott just wanted to touch his new baby brother which was very cute! We know Scott is going to be a great big brother. Tyler looked great in the evening, even though he was connected to a lot of things. That night, Danny and I stayed at the hospital in a room they have for parents. UCSF has great play rooms for siblings and patients as well as so many great ammenities for parents. The staff has been so great and suppportive. We feel so blessed to live so close to some of the top surgeons and facilities in the world to take care of hypoplastic children. Tyler had a rough night and morning with heavy breathing and some convulsions due to Prostaglandin (pge), a drug he is given to keep his ductus areteriousus open allowing his body to receive oxygenated blood. They had a really hard time putting in a PICC line to replace the lines in his belly button. These lines will stay in for a month, allo

Tyler did great in the NICU. They put some lines through his belly button and he was pink and breathing on his own. He looked so great. The cardiologist came and talked to us about 8:30 PM after his echo and said that his left ventricle looked larger than they expected. He said that discussions and decisions at UCSF will be very interesting in the next week as we plan what the best surgery option is for Tyler. He confirmed that he had a hypoplastic left ventricle and aorta as well as other smaller issues including an AV canal and valve problems. There was some discussion that the 3 stage Norwood procedure might not be needed if the left side of the heart can sustain life, which was hopeful but by no means the prognosis. It was great to see him peaceful and resting. The next morning, he was still doing great and they decided to intubate him for the ambulance ride to UCSF in case the medication he was on caused him to stop breathing which is common. He looked great and Danny and I got

5 PM...The very best part to the day was being able to hold Tyler Anthony for about 10 minutes after he was born. I didn't know if I would be able to hold him and it was the greatest blessing!! I look so forward to being able to hold him again and those few moments make me realize what a miracle he is. I just felt so blessed. I thought about so many parents who chose not to give these little guys a chance and it made me so grateful to have him in our lives. He was perfect. 7 lb 12 oz. 21 1/2". Brown Hair. Calm. It was the best 10 minutes of my life to have my son in my arms so peaceful and doing so well.

I was expecting contractions to begin in about 10 minutes, but they were pretty small and insignificant for an hour. Gave me and Danny time to nap and watch a little Dirty Jobs and America's Funniest Videos. By about 4 the videos weren't so funny to me as the contractions became more steady and painful. I opted not to have an IV of pain meds , since they said it could be hard on the baby, who was already going to have enough health issues. Although I don't use labor drugs, I really don't recommend it to anyone. It was quite painful, but only lasted about an hour. The worst part of the entire labor was when I asked for the doctor to come in because I knew the baby was going to come out and I needed to push and the nurse thought I was kidding. She measured me and told me I was a 7, which I really didn't believe. She tried to tell me the doctor was coming, which I knew she was just telling me, so after being a little more serious and quite demanding, the doctor

I went in for my weekly NST (non stress test) and doctors appt and came out with soo much more. My stress test for the baby, weekly monitoring of his heart rate, ultrasound and my contractions looked fine. The doctor checked me and I was dialated to a 2-3, but no sign of the baby. My doctor was concerned that my blood pressure would not go down from the 140-150/ 110 range, so they sent me up to labor and delivery to be monitored. I called Heather Oyler, my saint for the day, who was watching Scott to tell her and she said they sometimes deliver you if it that high. I just felt so lucky that Scott was in such great hands and with a buddy. The blood pressure wasn't going down and the doctor decided to induce me since the baby was 40 weeks, had a heart condition, I have fast deliveries, and was at risk with my blood pressure. She called into UCSF to check on the plan for the baby and when they said that it would be fine to transfer him in the morning. The doctor broke my bag a

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Both me and the baby. As much as we are excited to meet Tyler and welcome him into the world, we are grateful that he is gaining weight before his first surgery. I weigh the same as I did with Scott at this point. By body has carried both babies about the same. The doctors were really concerned that I was so small with Scott, but aren't worried with number two because of my past pregnancy history with Scott. Yesterday I had a Dr. appt. and was asked what my beginning weight was which I had no idea. He said, "Well, we will just keep it at your 11 week weight so it doesn't seem like you have gained too much. What is another 10 pounds I thought?? Start weight: 110. Now: 144. Still down 15 from my mission. I enjoy being pregnant and think it is fun to have a little guy kicking inside. Even though I have gotten uncomfortable in the past 2 weeks or so. Nothing to complain about.