Wednesday, April 29, 2009

Update

I got a chance to meet with the doctor today. She said his heart still has a small hole but that they will not do surgery at this point because he still seems well. She also said that when he was born he was at the bottom statistically for 26 weekers. But now he is at the top healthwise. He is 800 grams (1 lb 12 oz) and the doctor said that you rarely see a 800 gram baby breathing mostly on its own! Yeah for Duncan. She said we should pray that he doesn't get an infection and that he continues to tolerate feeds. So far so good. If he continues to eat more they will take out his pic line (a small line that goes through his arm up to his heart to feed him fluids while he can't eat on his own). Once the pic line comes out he will be less likely to get an infection.

Tuesday, April 28, 2009

First meal


As of today April 28th, the most exciting news is Duncan has had his first meal. It is composed of less than a teaspoon of milk every six hours. A quick word on pumping milk for your baby: the picture above shows the wonderful view I get to enjoy while retrieving milk for my baby. Notice the absence of said baby. So until yesterday when they fed him a tiny drip of my milk for the first time I was having to pump milk every three hours day and night. Just imagine if at all possible, all of the things you don't like about nursing: waking in the night, pain, frequency without any of the things you love; baby, seeing your baby be calm and satisfied, catching a brief smile as they doze off, holding your baby (bet you never thought that was a prize in and of itself), bonding. There are a lot more positive things about nursing than negative, but with a pump and no baby it is a sad affair. Luckily they started using my milk, my hard work has paid off! They also did an echo cardiogram today, tomorrow we should know more about the condition of his heart.

A birthday present




Two days before my birthday the nurses decided I could hold my baby. They said it was an early birthday present. It was scary and awesome. He was so light and so precious. He had so many wires coming from him it was hard to just enjoy the miracle of his life. But I did feel so blessed to hold my baby like a normal mother gets to. Can you tell he has a black eye? Another little gift Mommy gave him at birth.

A bumpy road



The week of the 20th-26th was full of ups and downs. At the beginning of the week we were hearing talk of heart surgery. Duncan was born with PDA a heart condition that all infants are born with. It is a like a release valve in the heart allowing the heart to bypass the lungs in the womb since the lungs don't need to work because the umbilical cord is pulling the load. Soon after birth most babies' hearts heal up in three days. But Duncan has had issues with blood pressure, grey swollen tummy, blood sugar, blood gases, blood clotting just to name a few. I personally think with all of the trauma his heart just couldn't focus on repair. His next echo later in the week showed a small improvement (thanks to your thoughts and prayers I am sure). The surgery has been delayed but will still take place if the heart shows any more signs of distress. This week he was weaned from his pain medication, and his sleeping medication. He was also weaned from his humidifier and by the end of the week he was weaned from the Oscillator to a regular Oxygen machine (can't remember what it is called). He finally was able to move from oxygen from a tube shoved down his through through his vocal cords to his lungs (no crying) to CPAP, (a breathing treatment that attaches to his nose and the tube down his throat was removed) which is supposed to be better but it bulkier and annoying. He also got off of the biliruben lights (Jaundice) and is now wrapped up in a blanket with a cover over his incubator. This makes it hard to see him and impossible to get to touch him.

Why True?



Okay so a few words on our special baby's middle name. Christian and I both came up with the name independently of one another. We were both trying to think of a name with meaning. Such a special baby surely needs a special name. We were trying to come up with an ancestor for a middle name. On a side note, the name Duncan is not only my maiden name but also in honor of our ancestor Homer Duncan (clearly his first name would be repeated). This ancestor found the gospel of Jesus Christ at the time of Joseph Smith, he traveled across the plains as a pioneer and passed on the gospel to future generations. So back to True. When we thought about this name I couldn't help thinking of a Hymn, True to the Faith. The words flowed through my mind "shall we shrink or shun the fight? NO!" I thought this was appropriate for our little one having to struggle just to stay alive. Next I thought of the chorus "To God's command, soul heart and hand, faithful and TRUE we will ever stand." It is through the faith and prayers of our family and our friends that this little miracle baby has made it into this life and has continued to get healthier. We always want our special child to remain True to the faith that made his life possible.

Brothers and Sisters meet




On Sunday, April 19th the beautiful Whitney children; Lincoln, Ruth and Jane came to the hospital to see their baby for the first time. Lincoln was quiet but agreed that Duncan looked a lot like his brother:) He asked a few questions about what the machines do, he didn't cry so that helped me to stay composed. Ruth's first comment was "what a cutie" she repeated this over and over and never seemed to notice all of the wires and machines around. Jane didn't seem to really understand but she did say "baby" and pointed at Duncan. She is going to love him when he comes home:)

Sunday, April 26, 2009

The first few days



Amy mostly cried the first few days. Hopefully you can forgive her if you tried to call and talk-- she was dealing with a lot of scary things. One of the scariest: hormones. Duncan was put on an Oscillator in the first few hours. It is a machine that blows hundreds of breaths per minute into his lungs. This keeps the lungs open full-time and gives a good deal of oxygen. The first day he was up to 60 percent oxygen that he needed. (Christian remembers 100%). By the end of the second day he was down to 30. A goal would be 21 percent, like room air, what you and I are breathing right now. Other problems that showed up in the first few days included a grey abdomen which could have indicated necrotic bowel, meaning dead bowel. This would require the dead tissue be removed from his abdomen. Not good. He was also trying to learn to breath with lungs which didn't develop well enough in the low amniotic fluid ("hypoplasia") and were "stiff". He was what the fancy doctors like to call "sick". He was on drugs to help with pain, drugs to make him sleep, drugs for blood pressure, IV fluids to "feed" him and fat, called Lipids, to help fatten him. He could not eat because of the problems with blood pressure and dead bowels. He was also Jaundiced and had to be under photo therapy. It makes for better picture-taking (without the photo therapy, his incubator would have been covered by a blanket) and he got to wear cool shades (to protect his light-sensitive eyes), so jaundice was the least of our worries.

First visit from Mommy





Christian followed the neonatologists up to the NICU where Duncan would find his home and later when the epidural wore off Amy got to go and visit as well. Does it look like that baby is in a bag? He is, it is a bag to help him to keep his moisture since his skin can't do that alone.

Tax Day






On Tax day of all days. On the 14th of April I bled all day, why bleeding you ask? Yeah, we don't know. One theory, my placenta was tearing away from the wall of my uterus. Things weren't looking good. Apparently you need blood to live and to avoid a blood transfusion. I was also having contractions and the doctors decided things weren't going to get better so we needed to prepare for the delivery. I had an epidural, pitocin and a long painful labor. One of the most painful parts was realizing that the 14th was ending and tax day had arrived. After losing a few bets, Christian picked 3:33 for his next for-sure-the-baby-will-be-born-at prediction. Eager to please, Duncan arrived at 3:33. We had a Perinatologist, a labor and deliver Nurse, a Neonatologist and 3 Neonatal nurses there just in time for his arrival. I actually literally crossed my legs for the last couple of minutes while we waited for the Neonatologist (that means specialized premature baby doctor). One breath, 3 pushes and the longest 24 hours of our lives began.

Premature Rupture

A few quick words on Premature Rupture of Membranes. Here is what Amy has learned about early water breaks. If your water breaks as early as mine did, you will either deliver soon afterward or you could go for weeks. One reason water breaks is that you have an infection, that is why you would possibly deliver within 24 hours of the initial breakage. If not, who knows why it broke and you could have many weeks. The low amniotic fluid is damaging to your baby but not fatal. Your umbilical cord is carrying most of the load. The amniotic fluid is necessary for your baby's lungs to develop however, so no fluid makes it impossible for their lungs to work outside of the womb. Luckily for me my fluids stayed at a 4 the whole time (what does 4 mean, I don't know, higher than 3?). Your baby is in danger, my OB said the prognosis is NOT GOOD. I was scared into never standing when I didn't have to use the restroom. You should keep as much fluid in as possible and gravity, although helpful when you want to stick to the earth, not so much when you are leaking amniotic fluids. Doctors will not stop labor because labor is a sign of infection, if you are infected it can be really bad for your uterus and the possibility of keeping it, and an infection can add to the problems your baby is born with. So from 19 weeks 6 days to 24 weeks we knew if we went into labor there would be no chance for our son. At 24 weeks the prognosis is not-so-good. Each weeks that passes gives your baby another chance. Our sweet baby made it inside for 26 weeks.

To The Hospital





On March 30 Amy checked into the the hospital to wait out the final weeks of her pergnancy. She was 23 weeks and 6 days. A baby cannot survive out of the womb until 24 weeks. The four weeks of bedrest were like waiting for a ticking time bomb. Once we made it to 24 weeks we knew our baby had a chance to survive. For two weeks Amy layed in her hospital bed. She had cafeteria food, visits from friends (treats and flowers too!), a birthday party for our sweet two year old Jane, Easter, cross-word puzzles, several bleeding scares, contractions and worry. Many a doctor came in and told us things we could hope for and dread. A visit to the NICU was helpful for both of us but didn't really prepare us for our future visits there. At home, life went on without Mom. The night before Amy left she layed in bed with each of her beautiful children and cried. But the heavenly Whitney children Lincoln, Ruth and Jane were well taken care of by their Great Aunt and Uncle, their adoring Grandparents, and their Aunt Angela and their special cousins.

A Long Wait

Immediately we had an ultra-sound, several visits to the emergency room, a new set of doctors (Perionatal specialists) and an outpouring of love like you have never seen. Two of Amy's special friends were there when she got home from the doctor to clean our house. Countless friends stayed with her at home so she could be with our children and they could bring her food. Other people brought dinners to our family. Amy literally wasn't required to lift a finger. Both of our parents were able to come and help for long stretches of time. Amy's brother and his family drove down from Utah with their 7 kids and we all had a blast, Amy from the couch. Prayers and thoughts from everyone we could imagine came pouring in. Many of the selfless acts by friends and family helped us make it through the four weeks of bedrest and have blessed our lives and the life of our precious little baby.

A Scary Day

On Monday morning March 1 Amy woke up and noticed she was soaked to her knees. She woke Christian and headed into the Labor and Delivery to get a confirmation to her fear. The triage nurses at the hospital said the "fern test" was negative and that she must have just had an accident in her bed. The next day she made an appointment with her OB and he confirmed our fears. She was 19 weeks and 5 days pregnant and her water had broken. Day 1 of bed rest with "bathroom priveleges".

Thursday, April 23, 2009

A new baby!

Amy and I found out in late-October that we were expecting our 4th child. We were very excited. On February 16, 2009 we went to the cardiologist because earlier children Ruth and Jane have had heart issues and some heart problems can be addressed in-utero. The heart doc was able to tell us that he was a boy (and that he didn't seem to have any heart defects).

How is Duncan doing?

"How is Duncan doing?" is the question. So, here is the blog.