The 6 of us: First Family Picture

Last week, brother Mills in our ward asked me to take a family picture for the ward photo directory, so we thought this afternoon would be a good time to try. Amy held him, and when you do that, you can't move around much or get up. The rest of us had to wait in the family room until Jane woke up from her nap. Maybe she was still waking up, because Jane didn't want to cooperate with the picture taking, but I think it was more the case that she was scared of Duncan -- he's so intimidating. The wires are what's a bit scary to her, I bet. Ruth gave him lots of kisses. His respiratory schedule is 8 hours on the nasal cannula (good) followed by 4 hours on the CPAP (not as good). The nurses hope that tomorrow he can give up the CPAP for good. It seems like he does better on the cannula than on the CPAP. He might be ready for his first bottle feeding this week; he's using a feeding tube now. No other news on his brain, or heart. He has continued to eat well and he's still at 3 lbs, 5 oz.

First look

Well, it's official, Duncan doesn't have ROP. ROP stands for retinopathy of prematurity. In short it means eye problems because of being born premature. He is still at risk for developing ROP so he will be rechecked in two weeks, but the doctor said his eyes are mature for his age! We dodged another possible complication. Good job Duncan, keep fighting!

New look

Got to help give Duncan a bath last night. Sounds like it would be wonderful, but I have dirty bathtub water phobia which is worse when someone actually let's loose in the water. I wanted to give him another bath or a shower (much more sanitary right?). Oh boy. He sure was cute when I gave him a little head massage. I've noticed he likes to cross his feet when he is relaxed so I took a picture. Last night he weighed 3 lbs 5 oz!! Wow what a strong baby. He started on nasal cannula today and we will see how long it lasts. It sure is cute to see his little face. The nurse put his feeding tube down his nose too which is different. If he can stay on the nasal cannula the next step is feeding from a bottle and then nursing. Come on Duncan you can do it!!

Aim the other way, boy.

This morning Amy was at the hospital to witness "grand rounds". Duncan was placed on a throne and fed peeled grapes by all his caregivers in succession -- O.K. I guess that's just what I imagined "grand rounds" would be. Amy says it involved all the doctors and therapists and specialists who are involved in Duncan's care. They all gave reports to each other. Until now, we had only witnessed regular rounds, involving the doctor and the nurse practitioner. When he was born his weight (2 lbs) was at the 50th percentile for 26 week babies. Now he's at the 30th percentile. Today, during the "grand rounds", the nutritionist (between grapes) said his weight was "not very good". We think her under-informed. First of all, after he was born he got pretty sick: His bowels were not working (gray); he wasn't breathing on his own at all; and had all sorts of other problems, many of which we've blogged about. He got down to 1 pound 10 ounces at his lowest point (about 3 weeks ago?). But since then he has been consistently gaining weight. Yesterday he was 3 lbs, 1 oz. and tonight he weighed in at 3 lbs, 3 oz. This was immediately after he filled his drawers twice while I changed him. I was standing to his right trying to maneuver everything, when I looked away for a second (maybe to throw out a wipe?) and suddenly there was a stream of yellow flying through the air at me. Aim the other way, boy.
He's having his first eye exam on Friday. More on that to come.

Every breath

Our beautiful baby is a gift from God. When he was born, everthing seemed so uncertain. There was so much happening, so much to be concerned about. His every breath is still a gift. Mortal life is fragile; sometimes it feels permanent, but not for long. Eventually, we're brought to realize our own weakness. We're not ultimately in control of life. When Duncan was 4 days old (the Sunday after his birth), I drove with our Bishop down to the hospital to give him a priesthood blessing. Amy and her brother Andy and sister-in-law Angela were there. My mom and dad arrived. I can't express how grateful I am to have a knowledge of the gospel of Jesus Christ and to hold His priesthood. At that time, the knowledge that our family can be together eternally gave us hope and comfort where we might have known only angst and fear. The conviction that we lived together with Duncan before this life and that we may forever made our love for him grow. There had been crying, but there was calmness and surety. I asked our Bishop to annoint Duncan. I had worried about how to bless him, what to say, but I realized that it did not depend on me. Our baby was perfect. He must have the faith of an angel. Whatever blessings our Heavenly Father wanted him to have he would have. We blessed him and there was a sweetness. I don't recall all of the blessing, but I do recall that he was blessed to recover, that he was blessed to be an example of faith and courage to his siblings. When I spoke to him, I could sense that he understood. Well, he's doing well now and he has done remarkably well. We don't know what the future holds, but I would be remiss if I didn't acknowledge that God has been the author of his progression. Everything we have that is good He has made possible. My prayer is that we'll remember that our lives are not the result of luck or of our own work.

Face time

Duncan doesn't enjoy the CPAP machine on his head. When he gets to have it off for a few minutes you can tell he really likes it. It's got to be a relief. Until tonight, I hadn't tried to figure out how to use the video function on our little camera (video is not its main function). Just as Duncan and we were enjoying some CPAP-free face time together, it occurred to me that we don't have any video, so I thought I'd get some. Here is when the nurse was reattaching the CPAP. You can tell how much he wanted it back on.

Drowsy

You can imagine how exhausting it is having to go back and forth to the hospital all of the time. It is nice when you can just hold the baby and close your eyes. The other night Christian was coming home from a late night hospital visit and called me to let me know he was on his way. About 45 minutes later, he still wasn't home. I wasn't worried because I thought he must have gone by his office on the way home. I was getting ready for bed and I happened to open the door to the garage to throw something away. I looked out into the garage and saw the garage door was open, Christian's car was in there and the light that comes on when you open the garage had already turned off. At first I thought, well I guess he went to talk to a neighbor that was outside at 11:30 at night. It only took me a minute to realize how unlikely that was. Suddenly I realized Christian must have had a heart attack and was laying on the floor of the garage. I was shaking as I walked out into the garage to practice my CPR skills. To my great horror, Christian was still in the car with his eyes closed. I was so scared that when I knocked on the window it was hardly audible. He didn't respond. I was in full panic mode when I knocked again louder. Christian's eyes popped open. I said WHAT ARE YOU DOING!!! He said, I fell asleep. So all of my fears turned to complete hysterical laughter. Baby is doing great today. He enjoyed having his Daddy hold him yesterday and finally got a visit from his brother and sisters. Jane had a similar dislike for his CPAP as I do and shook with terror when I held her up to see him. I'll take her again once the CPAP is gone!

3 Pounds! And trying to breathe on his own.

Amy's back from the hospital. There have been a lot of developments today. This morning they took him of the CPAP: the breathing headgear with the prongs or cup that force air into his nose. They replaced it with the less intrusive, less intensive nasal cannula (pictured). He tried it for about 2 hours and then they realized he wasn't ready; he experienced bradycardia (slowed breathing and heart-rate) about every half hour. So, they put him back on the CPAP. They're going to try the cannula again in little sprints (hours at a time, gradually increasing the time). It is encouraging that he did as well as he did. Tonight he weighed in at a very impressive 3 pounds.

Beautiful Baby

Have you ever changed a newborn only to discover that they immediately filled their diaper again. Apparently that happens with preemies as well. Happened with this particular preemie three times in one changing. He is doing great. Obviously his bowels work. He will come off CPAP tomorrow and see if he can do without it. This picture is a little preview of what it will be like to see more of that beautiful face! The nurse says without setbacks he might be going home sooner than we expected. Let's pray he continues to move forward! Isn't he just the most beautiful little miracle?

First Outfit

They decided it was time to remove his pic line today. He is doing well with his feeds and up to 20 ccs so they stopped his pic IV and now he has no medications that can't be taken through the mouth. He takes a dose of caffeine every morning (do you think I should have told them we don't drink coffee?). The caffeine helps him remember to keep breathing, which isn't a natural thing for a micro-preemie to do. If it helps him breath better they may try the nasal cannula but they are continuing with a conservative approach so I don't expect it tomorrow. I am excited at least to have that site for infection gone and his arm free from tape an wires. I got to put his shirt on and I thought it looked more like a dress. I think preemie clothes are meant for 5 pounders not 2 lb 15 ouncers. One more ounce and he is 3 lbs! He's so happy about he gave me a smile while I held him (the middle picture) I think that is a smile? It's not gas, who smiles when they have gas? Now I better get some sleep.

I'm over it

I'm totally over this breathing equipment. I feel like grabbing the doctor and saying TAKE THAT THING OFF HIS FACE!! Would that be appropriate? It will all go by so quickly when it is over and I look back I'm sure, but for now not-so-much. Should I threaten to stick my fingers up the nurse's nose so she can see how it feels? He's probably just not ready like the nurse thinks so I should be grateful she is acting in his best interest. I repent. The picture is of Duncan being weighed last night. He weighed 2 lb 13 oz.

Connected

This baby sure has a lot of baggage. I was watching the nurse pull him out of bed yesterday and I thought I want a picture of all those cords. Duncan is doing great. He might get to try nasal canula tomorrow, if so I will take a picture. He is doing great with his food and is up to 17 ccs I think. At this rate he should be having milk exclusively (meaning no more IV fluids) by Thursday. After seeing another baby close by with infected small intestines I pray we will continue to have a good experience with food. I think he is getting a little rounder. It will be easier to tell when he is off the CPAP. We keep praying for no set-backs. He is a strong little baby!

Soft baby

Duncan has been doing so well. It's really encouraging. It goes without saying that we're not out of the woods yet, so I keep wondering if I should be worrying more; but then I realize that worrying never helps. Over the last week or so he has been steadily gaining weight and tolerating more milk. I think they're increasing his feeds by 1cc or something every twelve hours -- if I remember right, they're feeding him every 3 hours. I just got back from the hospital. Right when I got there the nurse let me hold him. I didn't hold him skin-to-skin, but just in my arms; last night was the first time I held him that way. I was worried that I would freak out about him being hurt in transport from the incubator (I didn't). Then when I saw the nurse getting ready to move him to my arms, I worried again that the nurses sometimes seem to pick him up (with all the wires attached) somewhat carelessly (O.K., not carelessly, but if I were doing it, I would be freaking out, so it's probably good that I don't do it.) and that the they'll trip on the wires or a wire will get caught and yank him out of their arms. All right, this is enough. I need to stop with all the panic. Holding him last night was so sweet-- I took the liberty to lift him up a bit and bend down a bit and gently kiss his head. His hair and skin are softer than anything else on this planet, but to hold and kiss him -- sublime. I hefted him in my arms several times, marveling at how light he is (2 pounds 12 ounces now). He's so much stronger now though. While laying on his back it's like he can raise his whole body on his head and feet. My mom went to see him today while he was having some "tummy time" and she said he raised his head up a few times. The nurses all remark how he gives them a hard time, which is a good sign-- he's not lethargic. Praying for good things.

Ultrasound

I guess his brain ultrasound went fine. One of the bleeds is gone and the other is "resolving". Christian made the mistake of talking to the Doctor who told him more details than he wanted to know about possible (although rare) complications of a brain bleed, I will not share those with you. I went to my nurse today (I finally chose a primary nurse who works with Duncan everytime she works) and she said not to panic that the bleed will not get worse unless he gets very ill. The doctors are talking about big changes in the next few days. He is up to 10 cc of milk every 3 hours. They will continue to increase those (1 cc every 12 hours) until he is at "full feeds" which will be around 16 or so ccs and then we will see the removal of the pic line!! It is like a really long IV that starts at your arm and goes almost all of the way to your heart. It is a site for possible infection so I say let's get rid of it! He is also going to try out nasal canula in the next few days which is even less help with breathing and less tubes all over his face. Once those two things are gone all that will be left is the monitors checking his heart rate etc. In fact he might even get to wear clothes at that point! I will take picture of these new developments. We would like all of those transitions to go smooth and no serious bumps in the road. We appreciate your continued prayers!

Growing

Duncan is doing well and progressing slowly. Slow is fine as long as he is moving forward. I got to hold him last night and he threw a temper tantrum about it. He screamed and kicked and then fell to sleep, feisty little fellow. He had a brain ultrasound sometime today and I am anxious to get over there and see if there was any news. I asked the doctor, what do we hope to see in this ultrasound. She said we would want to see his brain not worse and then they would not worry about brain bleeds anymore. I guess it takes a long time to resolve. Christian came at lunch yesterday and we happened to both be there at the same time so the nurse took a picture for us.

Blood

I went to visit my little one and ran into the Doctor and Nurse practitioner in the hall and they told me that he was looking pale so they tested his blood and it showed low something I can't spell, so they were going to transfuse him. I was glad because the nurses had told me that he will feel and do so much better with his new blood. Then I realized that transfusion means a new IV. Poor baby. Right as I walked in the nurse was gearing up for the procedure of finding a vein. So I was glad at least that I could be there to help comfort him and talk to him while she put an IV in his wrist. I actually helped the nurse with the needle and tape so I was like an assistant nurse for like one minute:) Duncan did fine. He didn't even cry. I helped him keep the pacifier in his mouth and he sucked happily away through the whole thing. I hope to go back soon and see if he is feeling better and doing well with the transfusion. Just a little plug for donating blood. I wonder if any of us ever realized that donating blood could save the life of a 2 lb baby. I never thought about it until now. One donation gives Duncan four transfusions of the same blood. The doctor listed off for me the procedures they go through screening blood for premature babies and he said it is the cream of the crop blood. Probably a person who took care of their bodies and treated them like the temples they are. I hope some of us can take some time to donate some blood in honor of my little one. If I could talk to that person who took the time to donate to my beautiful child I would be speechless, overcome with gratitude and love. Thank you all for your support and especially your prayers. In quiet moments at his bedside I feel power surrounding him. I know that power comes from the faith and prayers of so many people we love.

Daddy's turn

I was envigorated by seeing Duncan tonight. He seemed so healthy - so much healthier than before. He was stronger. When he moved his arms, I could tell they were stronger against my hand. He looked even more beautiful. My Mom and Dad called earlier in the day from the hospital. Mom reported they helped comfort him (and diaper him, if I remember correctly). Before I saw him tonight, he weighed 2 lbs, 4 oz. The nurse weighed him and the scale showed 1060. She couldn't believe he was so heavy, so she weighed him again and he was 1050, or 2 lbs 5 oz. I swear there are little miracles day by day. I'm just amazed that he stayed in the womb as long as he did with the water broken (19 weeks to 26 weeks) and that he got out just in time to beat the infection that had started in the placenta.

If we run out of diapers . . .

It is hard to portray how small he is in pictures. Here is a shot of his diaper which is so large the front flap has to be folded down and the sticky tabs cross over one another. Duncan is doing great today. Tonight when I saw him his oxygen was at 23 percent. 21 percent is what they call "room air" which means exactly the amount you and I are breathing right now. He is looking pale still and they are considering a blood transfusion tomorrow. One nurse told me once he is transfused he will need even less oxygen. We will see how he does. He is still getting 1 cc of milk every 3 hours but that might change tomorrow if he is still doing well.

Free to breathe

I held the little sweetie today and he just seemed so comfortable and so calm. Not like when they have to change his diaper and all of that. I took a picture when the nurse took off his CPAP mask so that she could give him a break and let him breathe on his own. He just does so well without it one day he won't have to wear it at all. She also weighed him tonight and he weighed 950 grams which is 2 lb 2 oz. He seems to be doing well. We can pray that he starts tolerating his feedings better and can start eating more and gaining even more weight!

Awesome

I went to the hospital expecting to hear that Duncan had an infection only to hear the news that they are going to start feeding him again. Doesn't mean he'll tolerate it this time but they are going to start slowly again. He looked great today. I got to meet with the doctor for a few minutes; she gave me some interesting information. My placenta had been collected and sent to a lab to see what information they could get from it and the results were in today. The doctor said that my placenta had started an infection and that it had not yet spread to the side of the placenta where it would have infected the baby but it would have had he not been born when he was. It was kind of a relief realizing again God's hand in Duncan's being born when he was. He was sick when he was born-- add an infection onto that and he would have been, well, worse and possibly wouldn't have made it. Later the nurse fed him 1/5 of a teaspoon of my milk and put him on my chest to kangaroo and the words to a hymn came to my mind:

Oh Lord my God, when I in awesome wonder
Consider all the worlds thy hands have made,
I see the stars, I hear the rolling thunder,
Thy pow'r thruout the universe displayed;
Then sings my soul, my Savior God, to thee,
How great thou art! How great thou art!

The miracle of my son's life definitely makes me think God has made something amazing, with so much potential for a wonderful life. I see him alive, and progressing and miraculously avoiding surgery and infections and setbacks that the doctors are expecting and I have to agree, How great and awesome are the works of God. (Trying to figure out how to make it say "posted by Amy".)

2 Pounds!!

Today was a little bit of a roller coaster. I have worried about his stomach getting an infection and they didn't mention it much today but said he looked pale. What exactly does that mean or indicate? No idea. I guess all of his labs looked good. When I visited this morning his monitors were beeping and I was stressed out. Went back this afternoon and all was quiet and he was peaceful. Tonight I went and the nurse said he looked great, despite the bright green fluid that was sitting in his stomach drainage tube. She weighed him before she gave him to me to hold and he was up to two pounds!! That was his birth weight so I am happy to here that news! Stressed out, happy, sleep deprived, sick of pumping what a week and it's only Monday. P.S. Christian went to see him today and he got to see him when he was awake and Christian says Duncan looked at him. Pretty awesome even if he can't see that well. He was awake when I got to hold him and he just stared in the direction of my face and gave a few of those content smile/possibly thinking about crying faces. I like to think they were the smiles of a healthy baby. (Posted by Amy)

No food for you

I went to see the sweetie a couple of times today. He apparently is showing some signs of trouble digesting. He had a questionable diaper last night and his feeding tube is sending up things that aren't that pretty. He will have a rest from eating until things look better. We are supposed to pray his stomach is not infected. I took a picture of his tiny pacifier that is huge compared to his little face. Everything else is looking fine and he continues to show a feisty spirit! (Posted by Amy)

Amy just got back from the hospital about 20 minutes ago and here are some pics. The nurse did something unprecedented. She took his breathing stuff off for a few minutes in order to weigh him without it on. It made for good pictures. Without the stuff on he breathed fine! When Amy got there tonight she spoke to him and he immediately moved his head in her direction! The nurse said "Oh, you recognize your mommy's voice!" The nurses work 12-hour shifts and each has another baby they're assigned to. However, we've only seen repeat nurses a couple of times. Tonight's nurse let his incubator be open more than normal, so Amy had a lot of contact with him. When we hold him we do it bare-chested, so the baby's naked skin is on ours. They call it "kangaroo care". They were going to start increasing the amount of Amy's milk they give him. They give him 1 cc every 4 hours. 1 cc is 1/5th of a teaspoon. They've not been able to increase the amount however, because he hasn't been digesting it well. They give it to him from a syringe that goes into his feeding tube. They just squeeze it right in. Then they keep the syringe closed, so the food can't come back. Later they open up the syringe so it can come back up if it needs to. Hours later they suck it out to see what he has digested. He hasn't digested much, so they haven't increased the amount. That he is having trouble digesting is not a surprise though. Amy says the nurses said tonight that a 28-week baby does not have a developed digestive system. He gained a little weigth (10 grams, I think), but not enough to push him above 1 pound, 14 ounces.

Tonight I got to hold Duncan for the 2nd time ever. I held him for about an hour and a half. He did really well except that when I started to zone out his heart slowed down. An alarm (of which there seem to be dozens) went off to indicate it, but I didn't know what it meant. 2 nurses came over and told me to rub his back. I did, but not hard enough, so a nurse joined in. They told me it's fairly common for the heart to slow down like that. Amy says it's because a preemie's body gets comfortable and it forgets to breathe, have a heart beat, or what-not. It happened again about an hour later and I knew what to do. No nurses were needed. Amy says they won't let him go home from the hospital unless he's no longer having apnea (stopping breathing). I wonder how much apnea he would experience at this stage if he didn't have the breathing assistance. Amy tells me he was off the CPAP (breathing assistance) for 3 or 4 minutes today and did well on his own, without any assistance in that span.

These are pictures from this morning when Amy went down to see him. A couple of days ago, the CPAP apparatus that was giving him oxygen was beginning to rough his nose up a bit. So, they put him on something else -- an oxygen thing that cups over his nose. Amy says she saw his upper lip for the first time today because of the change. He has been eating milk since Wednesday (2 days ago) and seems to be tolerating it well. Last night I (Christian) went and he hadn't gone to the bathroom in 48 hours, but today they told Amy he did last night. They will be slowly increasing how much he eats (through the tube). He eats milk mixed with a calorie supplement. He weighed in today at 1 pound 14 ounces, so he's been gaining about an ounce a day for the last 2 or 3 days. He's gaining a reputation in the NICU for being feisty. Last night he was kicking his legs quite a bit. The plan is still for him to be in the hospital until July.