Saturday, January 31, 2009

Day 28--It was SAD, so SAD!

According to the surgeons, the whole procedure went well. But it was so sad to see him waking up from the anesthetics--I could see that he was in pain and so agitated, but he couldn't even cry because he had that tube down his throat again. When I left this evening, they still hadn't extubated him because he needed so much pain medication to let him calm down and sleep that he wasn't quite with it enough to completely be in charge of his own breathing. It was sad for a mom to see her little helpless baby like that.

Thanks for all of your prayers!! He really is doing well and I felt so strengthened today. Every time I looked at his pitiful, pained expressions and thought I ws going to lose it I was able to keep it to a tear or two instead of a flood. THANKS!

Friday, January 30, 2009

Day 27--Poor guy

Dexter was transferred to The Children's Hospital today, which is right next door to University Hospital, but he had to be transported by ambulance, not because his condition merited it but because it's policy. And I didn't even get to be there for the big adventure. As you would expect, emergency transports come before elective transports, so he kept getting bumped back. At 1:30 the hospital called me and said he'd be moving at 2:30, so I got Elodie up from her nap and headed over to the hospital only to find that an emergency up north had called the NICU transport team away and it wouldn't be happening until 5:00 or maybe 6:00. So Aaron and I decided to go along with our original plans to have a night out while we had the chance. As we were leaving the temple around 7:00, the hospital called and said he'd be transported in 5 minutes, but we were 25 minutes away, so we again decided to go along with our original plans and we went to Chipotle (courtesy of a generous, kind-hearted friend) and a movie (courtesy of a gift certificate for Aaron being a good TCH employee).

After that, we went to Children's and visited Dexter in the new NICU. It felt weird--the University NICU had really come to feel like home. We miss all of Dexter's nurses and therapists and doctors already--they took such good care of our little guy. Hopefully Dexter won't be at Children's long enough to make it feel like home. If all goes well, he could be home Tuesday or Wednesday!! As I held Dexter so peacefully in my arms tonight, I just felt so bad sending the little guy to surgery tomorrow. Poor little guy!

Thursday, January 29, 2009

Day 26

Just a quickie because I really gotta get to bed! (FYI, my blog is an hour off where it shows the time posted. I wonder why, and I have no idea how to fix that.)

Dexter is scheduled for surgery Saturday morning at 8:30 at The Children's Hospital, which means he'll be transferred to their NICU tomorrow. We decided that it's in his best interest to get both the G-tube and the Nissen fundoplication. As far as surgeries go, they assure me that these are fairly common and routine and quick, but there are risks inherent in all surgery and anesthetics and he has to be intubated for the surgery, so please pray for Dexter extra hard Saturday morning. I'm grateful that a lot of you Relief Society sisters will be at the temple Saturday morning praying for my little guy while he's actually in surgery! I love you all--thanks SO MUCH for your support!

Wednesday, January 28, 2009

Day 25--Decisions, Decisions

Yesterday all seemed settled after the Care Conference. I felt relieved to have the G-tube decison made and to be moving forward. And then they did the upper GI today which showed obvious and significant reflux--obvious even to me and significant to the radiologist, who then recommended an additional surgical procedure to be done at the same time as the G-tube, called a Nissen fundoplication. And now we have to make another decision. I'll be talking to the attending doctor and the fellow and hopefully the surgeon tomorrow, and hopefully I'll get enough info about this procedure to feel ready to make the decision. For those of you who are wondering, the Nissen involves wrapping part of the stomach around the top of the stomach where the esophogus comes in, creating a collar that kind of tightens the opening and prevents stuff from refluxing back up the esophogus. If that doesn't really make sense it's because I don't really know what I'm talking about.

Tuesday, January 27, 2009

Day 24--The Care Conference

After talking and praying together last night, Aaron and I went into the Care Conference feeling like a G-tube would be best for Dexter. Everyone there (attending doctor, fellow, resident, primary care nurse, charge nurse, speech pathologist, speech pathologist student, and developmental therapist) agreed with that assessment, but they were so great about answering our questions and leaving the choice up to us. I felt like we all communicated really well and got on the same page about what to do next. It was definitely a positive experience. Before the G-tube surgery, he needs an upper GI, which is apparently a lot like a swallow study but it involves what happens with a full stomach. Then he'll be scheduled for surgery, recover, and come home. Sounds simple doesn't it? We are so excited to have him home, even though it's going to be a lot to juggle with pumping milk for him, trying to teach him to feed orally, and giving him G-tube feedings. Not to mention coordinating in-home physical therapist and occupational therapist visits and daily PT exercises for Dexter. Oh yeah, and maybe I should take care of my other kids somewhere in there. Hmmm. It may take me a bit to adjust, but I'm sure we'll get it all figured out and then life will feel normal again.

Monday, January 26, 2009

Day 23--The Swallow Study

I was very grateful that the timing worked out for me to be there with Dexter during the swallow study. They thought that radiology would make me sit in a waiting room, but they were nice to me and actually let me watch through a little window where I could see him, hear them, and had a great view of what was going on inside of him via a computer screen right in front of me. My prayers were answered and he did a great job sucking, swallowing, and breathing during the study. They put straight barium in his bottle and he didn't mind the taste at all, although Melayna says it's pretty nasty stuff. They gradually thinned it with water, which allowed him to get more out, but they saw a tiny dot of it go into his trachea so they didn't have him try anything thinner. It seems like he protects himself from aspirating by swallowing very tiny amounts at once. This does make it hard for him to get much, but at least he is eating safely for now and has a good basis for making progress. They also determined that he doesn't have reflux problems, which is good news. They noticed that he's swallowing a lot of air, which could be another reason that he doesn't take much milk during a feeding--his stomach is too full of gas. So they tried him on a different bottle that's supposed to reduce the amount of air the baby gets, and Dexter was actually willing to suck on it!! He was being such a cooperative boy! AND they only had him suck for about 10 minutes and he took 10 ml. Not too bad, eh? Conclusion: Dexter can get back on his eating practice thrice a day with the slightly thinner thick liquids in the gas-reducing bottle with a break in the middle of the feed for good burping. Whew.

This evening when I went to feed Dexter, he was exhausted from a crazy day (in addition to the swallow study, he had an abdominal ultrasound this afternoon, both of which got him completely off his eating schedule and in protest, I guess, he had thrown up right before I got there). I did still try the bottle, but when he fell sound asleep with it in his mouth, I felt so bad for the little guy that I didn't push it, so he only got 5 ml. I've been thinking--with how sleepy Dexter is, I just don't think it's realistic to expect him to have the energy to eat 6 or 7 times a day, even if he does master his rhythm next week. Aaron and I are thinking that a G-tube may actually be in his best interest. The Care Conference is tomorrow, so I assume we'll all make a decision about his immediate future then. Check back tomorrow for the update.

Sunday, January 25, 2009

Day 22--Three weeks old!

Dexter had his first bath today, and I didn't have my camera with me. He was not exactly a fan of it. I think new things are rough on him. He kept startling and arching his back and tensing up; we were hoping the warm water would help relax his muscles. Oh well, it was fun to see him without all of the leads and monitoring things taped to his chest and feet.

Besides that, there's nothing new to report. When he ate with the nurse this morning, he did his overexcited burst where he keeps gulping instead of breathing even after you take the bottle out of his mouth, and his heart rate dropped down to 80 ( it's generally around between 130 and 170), which is apparently pretty concerning, so the nurse stopped it at that and recommended no more bottle feeds until after the swallow study tomorrow morning. He had gotten 10 ml. I'm glad that Dexter has experienced people looking out for him--I feel like they're really helping him get off to the best start possible for him. The nurse who had him today is so great (she's one of his regulars). When we got there after church he was chilling in a baby swing with a jungle mobile for entertainment. And the bath was her suggestion. She also found a vibrating bouncer with moving spiders and music for him to try out last week. She doesn't just let him lie in the same spot in the same position all day, and I really appreciate that. I'm grateful for good nurses who are cheerful and considerate for their entire 12 hour shift. They make such a difference.

Saturday, January 24, 2009

Day 21

Xander really pays attention to the conversations that go on around here. Today he asked me, "How many mils did Dexter drink?" In case any of you have the same question, I'll give you the quick update. This morning he drank 24ml, which is pretty good, but he got overexcited way too many times and gulped himself nearly blue (meaning lots of desats). Tonight he took 12ml, with a few overexcited bursts and several minutes of good pacing. With such thick milk, it seems like good pacing doesn't neccesarily go with lots of mils. We're going for quality and quantity, which is a lot to ask of this little guy!

The nurse thinks they should do a swallow study on him before his Care Conference to check for reflux and see how well he's really swallowing. That means they put barium in his milk and watch it as it goes down. It sounds like a good idea to me--I want as much information as possible before I take this guy home!

Friday, January 23, 2009

Day 20

Poor little Dexter worked so hard this morning and only got 11 ml of milk! He sure has the feeding squad stumped as to what to try to get him to make progress again. Since Wednesday, we had been very gradually thinning his milk to try and help him get more milk per suck, but it doesn't really seem to be working. The speech pathologist suggested we go back to the full nectar consistency and just let him practice to improve his suck and pacing.

Thursday, January 22, 2009

Day 19

This morning's feed was kind of disappointing--he only took 11 ml. He was awake and calm and seemed agreeable to it, but somehow he just wasn't sucking hard enough or frequently enough to get what he needs. I was trying really hard not to feel discouraged, but it's hard when I feel like he has this deadline hanging over his head--like if he doesn't catch on by the Care Conference on Tuesday with the doctors and therapists and us, surgery looms. Then I remembered an awesome principle from Elder Andersen's recent conference talk, "Faith is not only a feeling; it is a decision. He would need to choose faith." I decided to choose faith; we are doing all we can to help Dexter learn to eat, so there's no point in doubting.

By the time I came back to Dexter, I was feeling both faith and hope. And he did really well with the bottle--for the first time, he didn't desat once, meaning he was doing a much better job remembering to breathe and pace himself. In fact, he seemed to be doing so well that I was surprised that at the end of 35 min he had only gotten 18ml. It really seemed like he'd swallowed so much more. But he did well. He'll learn to eat.

Wednesday, January 21, 2009

Day 18

The feeding squad thinned Dexter's milk just a little, and he took 20 ml this morning. I am trying very hard to be patient with baby steps of progress.

At 6:30 this evening, I got to feed him again, and he took 27ml! I was so excited.

Tuesday, January 20, 2009

Day 17--A bottle? Oh yeah!

Dexter was favorably disposed towards the Soothie bottle with the green nipple just like his pacifier. He was awake and content and latched on right away--the complete opposite of yesterday's bottle attempt. He sucked and swallowed really well, and usually even remembered to get a breath in there. After about 30 minutes of really good work, we were kind of surprised to see that he had only actually consumed about 13 ml. We didn't realize just how slow the thickened milk flowed through the slow-flow nipple. So we tried a medium-flow nipple, and he sucked well, but was definitely more startled at the quantity of milk that came at his throat, and he choked and pulled back more than with the slow-flow, but he did get a couple ml. It's pretty tricky to find the balance--we don't want him to have to work so hard to get only a few ml, but we really don't want him to choke and have an unpleasant experience with eating. So for now it's slow-flow with thick milk. Even with a total of only 15 ml this morning, we were happy with his progress--he was willing to take a real bottle and that's something! They even said we're going to move to two oral feeds a day, so when I go back after dinner this evening, I get to give him a bottle by myself; no feeding squad tonight, just me and my litle guy.

Update: When I went back in the evening, he took 10 ml for me. Overall, he sucked and swallowed pretty well, except for getting a bit eager a couple times--he sucked and swallowed so many times in a row without breathing that he desatted pretty low and wore himself out. I felt OK with that progress until the nurse came in and told me that she'd heard the doctors talking G-tube again. One of the doctors feels like you can't just keep a baby in the NICU to learn to eat, so give him the G-tube surgery and send him home. Aaron and I think that it's only fair to Dexter to give him a chance to master this eating thing before considering surgery since he's making such steady progress (slow, but steady). But apparently the doctors only look at the numbers, and he did go down from 36 ml to 15ml when he switched from the rigged-up feeding methods to a real bottle. Anyhow, I was realizing again how far Dexter has to go and how much we need a miracle to get him to his goal of getting all of his milk orally. That realization gave my prayers increased urgency despite their redundancy.

Monday, January 19, 2009

Day 16--A bottle??? I don't think so.

The feeding squad had determined that Dexter was ready to try a bottle today--the Haberman Special Needs Feeder. But Dexter determined that he will not suck on anything but fingers and green pacifiers. We tried everything we could think of to coax him into giving the bottle a suck or two so he could taste milk and use the suck-swallow skills he's been working so hard on. But he refused to give it a chance. Since they were trying to move him past the finger feed, this taxed their creativity a bit. One of them got a bright idea of an inventive intermediary step between finger feed and bottle--we'll call it the pacifier feed. They cut a tiny hole in the end of the pacifier and stuck a skinny tube in it (the kind he'd been using with the finger feed) and connected the tube to a syringe of thickened milk. They taped the tube to the pacifier and gave it a try. Dexter loved it and took 36 ml through this unconventional means of oral feeding. He's a tricky one. They're going to try a bottle that's made by the makers of his favorite pacifier tomorrow. We're hoping that'll work because the pacifier feed is definitely only a temporary arrangement!
Xander and Elodie visited Baby Dexter again today. Xander was a very concerned older brother and asked just after they arrived, "Is Dexter breathing today?" Xander and Elodie were both glad to hear that he was. Elodie thought he looked so much better that she concluded, "he's not sick anymore," and Xander asked, "Why does the doctor say we can't take this baby home?" Refer to the previous paragraph if you need an answer to that question.

Sunday, January 18, 2009

Day 15--What hard work!

Dear darling Dexter Dahle drank down 30 ml today! Thank you all for your faith, fasting, and prayers in his behalf. Those 30 ml were definitely not easy for him--it was quite a miracle when he finally settled into the feeding and got that much down. Aaron and I were both praying silently but mightily throughout the endeavor.

Saturday, January 17, 2009

Day 14--I think I can, I think I can

Dexter didn't really want to be bothered with eating today; he just wanted to sleep (a common newborn dilemma). But we persisted and he persisted, and by the end of the 10 ml syringe, he was kind of getting into it, so we refilled it, and he kept on working and got a total of 15 1/2 ml. I was so proud of him! And he took it in less time than he took the 12 ml yesterday. Hooray for Dexter!

Day 13--Keepin' up the good work

Today we were pretty excited that Dexter was awake and willing during his time with the feeding squad. He successfully swallowed 12 ml today, once again with "improved quality." We are so grateful for his progress! I'm sure learning not to take simple things for granted.

Thursday, January 15, 2009

Day 12--Every drop counts

Progress? I should say so--he voluntarily consumed, by mouth, 5 1/2 ml, ladies and gentlemen! That's 1 1/2 ml more than yesterday! Why, that's only a few drops more, you may say. But progress is progress, especially when the developmental therapist and the speech pathologist say that it was "high quality" sucking, swallowing, and tongue cupping.

Doesn't he look pleased with his progress? When I went back tonight after dinner to hold my little sweetie, he kept grinning at me in his sleep. It took about 10 tries, but I finally caught a little grin! He just melts my heart--would you want to say goodbye to a sweet little face like this? It's hard to leave him!

As I was gazing into his precious face tonight, I felt so much gratitude for the miracles the Lord has worked in his short little life. And as I thought of the huge hurdle he still has to jump--taking his full feed (currently 69 ml) by mouth--I thought of the time when Christ healed a boy that the disciples weren't able to heal, and when the disciples asked him why that was, he answered, "This kind can come forth by nothing, but by prayer and fasting." (Mark 9:29) Then I thought of the principle of uniting in prayer to increase its power. "For verily I say, as ye have assembled yourselves together according to the commandment wherewith I commanded you, and are agreed as touching this one thing, and have asked the Father in my name, even so ye shall receive." (D&C 42:3) So I would like to invite any of you to join with us in fasting and prayer this Sunday for Dexter. We are praying that he will learn to eat effectively so he can come home to us. "Ask and ye shall receive" is more than a nice idea--it's a promise. I know that the Lord keeps His promises.

Wednesday, January 14, 2009

Day 11--Baby Steps

Dexter was switched to a low-tech bed today--an "open crib" like all the healthy newborns get. He's still attached to monitors and some oxygen and a feeding tube through his nose, but comparatively, he seems so easy to pick up now!
Dexter's mini-miracle of the day was progress in eating just in time. The developmental therapist came to his 9;30 feed today to do the oral exercises she'd developed. When she stuck her finger in his mouth to stimulate his sucking reflex, she noticed "marked improvement" and decided he was ready to try sucking a little milk again. So she called the speech pathologist who came with a student in tow and the team got to work on a "finger feed." First, they thickened his milk to nectar consistency and put it in a syringe with a skinny little tube coming off of the end. The developmental therapist taped the little tube to her gloved finger and the speech pathologist got her stethoscope ready to auscultate his swallows. She stuck her finger in, and he sucked a little and swallowed a little and didn't startle or choke or desat too much. He managed to get 4 ml down before he got the hiccups. They determined that coordinating swallowing while hiccuping was too big a challenge, so when he didn't recuperate from his hiccups after a couple minutes, they called it a wrap and gavaged the rest, as they say. I thought, "whew, he did 4 ml and his full feed is 56!" But the nurse and speech pathologist and developmental therapist were all very encouraged at his progress, so I reminded myself that baby steps in the right direction are fantastic. A little later when the attending pediatrician came to talk to me, I realized just what a miracle this little step of progress was. She told me that the neurologist had looked at Monday's EEG and found essentially the same thing she saw from the other one done when he was so sedated--he looks neurologically immature. No one knows just what that means for his future, but she was very encouraged by the progress he's made since birth. She said that as they had talked about Dexter, they decided that his brain abnormality would mean he would need a G-tube surgically inserted to send him home, but that after his progress with sucking this morning, they felt they could hold off on the G-tube and give him a chance to learn to eat orally. She said it may take him a couple weeks or even a month to get to the point where he can take his full feeds orally and go home, but based on today, he's making progress in that direction and they are going to be patient with that. Aaron and I felt so relieved to hear that a G-tube is not immediately neccessary. Thank you for your prayers--I know that the Lord is answering them. Let's continue to pray that Dexter will have the energy and coordination to suck, swallow, and breathe. And that his parents will be patient with his extended stay in the NICU--we want our sweet little guy home so bad!!

And now I want to thank our heroes of the day--Aaron's classmates who came to the rescue during cranky hour. Xander actually fell asleep next to me today, but when Elodie woke up, which woke me up and then Xander, he was apparently not done napping because he was in quite a rage. Of course, I needed to pump, meaning my needy kids got far less attention than they needed, so when Aaron walked in 15 minutes later, I was putting milk in the freeezer and both kids were screaming upstairs. I warned Aaron that he might not want to be home right now, but he just said, "I have something that will help," and pulled out two giant presents all wrapped up. When I called upstairs, "Dad's home and he has presents for you, " the crying stopped. It made their day. THANKS for your thoughtfulness and generousity!!! We ALL really appreciate it. I'll let this picture speak for Xander. As for Elodie, I didn't catch a picture of it, but when it was naptime, she wanted her new baby brother doll in there with her and threw her other dolls out. "He's so soft," she crooned in her sweetest little voice. She loves it.

Tuesday, January 13, 2009

Day 10--No more IV's!

Dexter's umbilical line needs to come out soon, so the docs decided to ramp up his breastmilk intake and decrease his TPN flow so that he won't have to have a new IV put in when the umbilical one comes out. The nurse said he'll get it out tonight at midnight and then he'll be free! When I left the hospital an hour ago, he was up to 1 1/2 ounces of milk per feeding, and 2 ounces is what they estimate he needs right now, so he's just about there.

Another new thing for Dexter today is these shnazzy hand splints. He gets to wear them three hours on and three hours off all day now to help his thumbs grip instead of fold into his hands. It looked like baby weight-lifting to me as he flexed his little arms.

So it was a good day for Dexter, I'd say, but I was having a bit of a rough afternoon. I felt desperately in need of a nap, but as soon as I fell asleep, Xander was done watching his show and offering frequent reminders that I'd promised to play a game with him, despite my every attempt to remind him how much fun he could have playing blocks or SOMETHING by himself. And then when Elodie woke up, I had to pump right away, making her feel neglected, too, which meant that she insisted on being held and carried around until dinner. Ah, my poor neglected children! I was physically and emotionally exhausted by the time Aaron came home; he asked one little thing and I completely fell apart--I was so rude to him, it's embarrasing to recollect. So then I added the guilt of being a terrible wife to the feelings that I was not a good enough mom for any of my three kids. I felt horrible and I could not pull myself together and stop crying. I asked Aaron to forgive me and then went to a room by myself and prayed and cried and repented and pleaded. I felt a little better and able to feel the Spirit again, but still, I couldn't seem to control the tears as we were trying to enjoy a nice family dinner--the only time we'd spend all together all day, and I was a leaky faucet. The inspiration came that I needed a blessing, and gratefully Aaron was forgiving enough to give me one. It's hard to describe the complete shift I felt. The power of the Priesthood is real--it was so tangible. As I left to go to the hospital, I felt peace, love, competence, hope, confidence, and emotional strength. It was a miracle. I am humbled to remember how dependent I am on the repentance and forgiving made possible by the Atonement. And I am so grateful for the refreshed strength I feel.

Monday, January 12, 2009

Day 9--No more meds!

During rounds this morning the doctors and nearly-doctors decided that Dexter doesn't need his Hydrocortisone anymore. They started it last Thursday after finding that his cortisol levels were low. That's a hormone that helps regulate blood pressure. Today, they said they weren't convinced that he needs it, so they took him off of it. That means that the only thing he's still getting through an IV is some nutrition (TPN)--the pre-digested lipids, sugars, and amino acids. But he's going down on that as he's going up on his feeds, so they said in just a couple days, he'll be off of the TPN. Then he'll really be free.

He just has to master eating. Today Dexter got to work with both a physical therapist and a speech pathologist at his 9:30 and 12:30 feedings. They determined that he's really not getting the sucking thing, so they're backing off even more. For the next 2 days or so, he'll just get his milk through his NG tube, prior to which they'll do "oral stim" to help his mouth learn to suck. And then they'll try him on thickened breastmilk to slow down its flow and hopefully prevent him from startling so much at the milk when it hits his throat. Our sweet little guy just seems to need extra time to learn skills I had taken for granted.

Dexter also had his follow-up EEG this morning, giving the neurologist a chance to see Dexter's brain without all the sedating meds he was on before. I'm interested to hear her interpretation today or tomorrow. We'll keep you posted. Thanks for all of your prayers in our behalf--we need them!

Sunday, January 11, 2009

Day 8 and workin' hard

Today brought Dexter's first physical therapy session, which tuckered him right out. He's not a huge fan of being messed with, and getting him to "develop more normal tone" involves being messed with. The therapist also addressed his feeding needs and suggested that we not push Dexter too fast or too hard and try to recognize his cues better. It was a little discouraging to think of slowing down our goal of feeding since feeding means taking him home. But Dexter is such a sweet little guy and trying to take a bottle really does tucker him out, too, so I can see what she's saying. It looks like I'll have the opportunity to continue to develop the much-needed virtue of patience.

Spending so much time away from Xander and Elodie has really made me appreciate how cute and funny those two are. Just now we were reading scriptures before bed, and Elodie asked, "What's seed?" I explained to her that in that context, it means your kids and your grandkids. And she said, "Oh, my drandtids. Yeah, I know." It just struck me as so funny, as if that made perfect sense to her. And this morning, Xander was having a bit of a rough time (I think this week has worn on him too) and I asked him if he could smile. He said he might be able to if I told him a good joke. So I tried really hard to think of a Xanderish joke, and here's what I came up with, "Why did the caterpillar eat the tree?" He started laughing and said, "That was a good joke!" I hope you guys liked that joke, too. For him, they don't seem to need a punchline, just a really funny question.

Saturday, January 10, 2009

Day 7--if at first you don't succeed, try and try and try and try

Let's see, did that drinking milk thing go?
Suck, suck, suck, suck, suck, breathe, gag, choke, sputter, turn blue.
No, that wasn't it.
Maybe suck, suck, suck, suck, swallow, swallow, swallow, swallow, turn blue.
Must have forgotten something. Oh yeah--breathe!
OK, breathe, breathe, breathe, breathe, pretend the nipple's not even there, breathe.
That didn't work either. Boy, this is tough!
Suck, suck, swallow, breathe. Repeat. That's it!

Dexter sure worked hard today at his job of learning to eat! Most full-term babies are naturals at the suck, swallow, breathe rhythm, but this is another way that his "neurological immaturity" that Miss Head-Honcho Expert noticed is manifest. By the end of each 12 mL bottle today, which took around 15 minutes to get down, he was starting to get the hang of it, getting more down his stomach, less down his front, and less beeping from the machine that reported his oxygen saturation levels. But three hours later, at the next feeding, he needed quite the refresher course. It's going to take him a lot more practice, but he'll get it. We tried actual nursing today, too, but that was even more challenging. Dexter just seems to need a little extra time to adjust to Earth life.

The good news is that a day of getting a little mama milk in his system (and another day for his medications to get out of his system) seems to be doing him a world of good. When Aaron came after work today, Dexter opened his eyes (wider than before but not really wide open) and looked at Dad for 45 minutes straight!! His previous record for keeping his eyes open was a mere 5 minutes, set earlier today while I was holding him. We were going to leave a little sooner to get home to our other kids by dinnertime, but Dexter was looking at us and listening to us and mesmerizing us with his sweet expressions--we couldn't pull ourselves away.
The lighting's not the best in this picture because we figured it would be rude to blind him just when he was starting to realize what his eyes are for. As Aaron was having his little chat with his son, he told me that he had prayed this morning that Dexter would open his eyes today. Ask and ye shall receive, indeed!

A few OTHER bumps in the road

So Tuesday as we were driving home from the hospital with a breastpump instead of a baby in tow, the Excursion started to make a very loud and disturbing noise. But when you pushed on the brakes, it stopped. And when you turned on a blinker, it stopped. And then the grinding fingernails-on-the-chalkboard-but-louder sound came right back. Aaron and I just looked at each other and laughed, "This, too, shall pass!" We weren't laughing quite as much when we drove it home from the mechanic's yesterday nearly $1000 poorer, but we reassured ourselves with the knowledge that we'd done our part to boost the shrivelling economy. Boy, that feels good!

Wednesday, we decided to take advantage of what seemed the perfect opportunity. Friday before Dexter was born I broke my tooth while eating Frosty's Chex Mix of all things, and it's driving my tongue crazy. I'm not sure why that unruly tongue has to make sure it's still broken every 15 minutes. Yep, it still is. Well Aaron happened to get an email on Tuesday about a chance to get free dental work done by the dental students who are about to graduate this year. So we went and waited for over 2 hours to find that I did have 2 cavities that would qualify for the board exams, so they might be fixed for free, but that my broken tooth needs a crown which will cost around $1000 if we go to a fully certified Dentist and $500 and at least twice the length of time if I go to the student clinic. And if I put it off too long, I was assured the pleasure of a root canal. Hmmm, decisions, decisions.

"Mom, the toilet won't flush again." Oh yeah, we turned off the water to the toilet because it wouldn't stop filling the tank and we figured we've flushed enough money down the toilet lately. Maybe we should fix that so Xander can flush again. Uhhh, maybe later.

Friday, January 9, 2009

Day 6--Another day to CELEBRATE!

Now that's more like it!

When we got to the hospital this morning, the miraculous good news was that Dexter had been completely weaned from Dopamine since 3:00am and was still maintaining his blood pressure just fine! That meant that he could get his arterial line out since his blood pressure no longer needed to be monitored so accurately, and that meant that we could hold him since there wasn't the risk of bumping the arterial line and spurting blood evertywhere. And that meant that he could try breast milk. (I'm not sure what the connection is, they just said that he had to be off dopamine before he could try it.) They also informed us that the neurologist from Children's Hospital would be making it over today to examine Dexter and interpret his MRI and EEG results. (Oh yeah, he got an EEG on Wednesday--that's the one where they stick things on the head and read the brain activity; I didn't get to see it because they thought they wouldn't do it for a day or two, so I left around 12:30 and they ended up doing it at 1:00. That's kinda the way it is--i have to get pretty lucky to be there for things.) They decided to leave his art line in until she came in case she wanted some weird blood test that they hadn't hought of. It's easy to get lots of blood from an art line, as you can imagine. Upon hearing all of this, I said, oh, I don't want to leave today--that's too much to miss out on! But the other kids were at a friend's house, and I was supposed to pick them up at 11:30. Gratefully, my mom had decided last minute yesterday that she wasn't going to come in to work today, either, so she was with me at the hospital. She offered to pick up the kids and take care of them all day so I could be there for Dexter. I know she was prompted to be where I needed her--yesterday I thought I had it all covered without her, but I am so glad she made it possible for me to stay at the hospital all day!

In the morning, I enjoyed how active and responsive he was. When he cried, I could soothe him with touch, pacifier, talking, and singing. He even peeked his eyes open, just barely a crack, and kind of tried to look around. He definitely wasn't bright-eyed and bushy-tailed, but it was the first time I'd seen him try to open his eyes at all, so it was pretty momentous to me!

The head-honcho expert neurologist came just after lunch bringing a very positive outlook, I thought, if not answers to all our questions. She gave him a thorough physical exam, and was concerned about his hypertension (overly tight, tense muscles), his posture (he tends to arch his back and tip his head back when he's lying down), his tendency to startle so readily, and his reluctance to open his eyes. Her concern from his EEG was that his sleep patterns looked somewhat developmentally immature, as if they were from a baby who wasn't full-term. And from the MRI, the concern was of course the abnormally large and septated ventricles. However, she said she saw no evidence of seizure activity, and she instructed the other docs to take him off of Phenobarb immediately. She also said very definitively that she saw no evidence of a bleed or stroke. So that theory was out, because as I said, she was obviously the head-honcho expert. The resident and lead pediatrician were just like, "yeah, oh, okay, of course I thought so too, whatever you say." She also ruled out the infection in-utero theory, because she said that the septation in the ventricles was too symmetric to have been caused by an infection. She suggested that it was just developmental--his brain just formed those ventricles slightly abnormally. And then, get this, she compared it to a brown freckle. She said just like you might have a brown freckle and someone else doesn't, it amkes no real difference. His ventricles are mildly, she said mildly, enlarged and they have membranes in them instead of being hollow. She suggested that this may not impact Dexter at all. She said that she saw no evidence that the membranes were obstructing the plumbing in the spinal fluid system, and that their enlargement dind't seem to be putting any pressure on the brain or infringing on the white matter around it. She didn't know why Dexter has had such a rocky start to life, but simply suggested a follow-up examination with her including another EEG after he has been off medications for a little longer and has had a calmer life for a bit. She wanted to know if she should schedule to follow-up with him at home or in the NICU, so she asked the resident what the plans for discharge were. We have NEVER heard a mention of discharge. They always make it sound like he'll just be hanging out in the NICU forever. The resident said as much, saying they hadn't considered discharge. The neurologist pressed, and asked what needed to happen before discharge. The resident said that Dexter had not tried feeding and needed to master that. Again, Miss Head-Honcho pressed and said "So, what? About 3-5 days?" And of course, the resident had to agree that that sounded like a reasonable goal for discharge. Now that was exciting to hear!! I like this neurologist--she gets things done!! And she seemed very reasonable about it all--she wants to follow-up so that she can compare Dexter to Dexter, instead of to some ideal of normal. She sees some concerns, but nothing extrememly disturbing from his imaging, so she's taking a we'll-see-what-he-can-do approach.. It defintiely didn't answer all of our questions, but it was comforting and encouraging to hear her take on Dexter.

Before Miss Neurologist left, she assured them that she didn't need any weird blood tests, so the resident and the nurse set to work removing Dexter's art line. Before I knew it, he was tasting breast milk for the first time!
Unfortuneately, for a guy who just learned to breathe yesterday, the breathe while I such and swallow thing was a bit tricky. So he gagged and sputtered and went down on his oxygen saturation and had to increase the oxygen in his cannula to a bit more than a whiff before he was ready to try again. And he spit it out and gagged and cried again. And again. So he had to get a gavage tube--a tiny tube stuck down his nose and into his stomach--to get some breast milk into his system. One step at a time. He really is doing great today.
I thinks he likes this being cuddled thing. It was just what Dad needed after a long stressful day of trying to go to class when his mind was definitely elsewhere. I can't describe how good and normal it felt to hold my little Dexter. I got to snuggle him for over an hour and a half and I still didn't want to put him down. I am so thankful for this little addition to our family and I'm overjoyed that his rocky start is smoothing out a bit!

Day 5--I'm free!

Notice anything about me? That's right--there's no tube down my throat!

Thursday was a GREAT day. The sedatives from Tuesday night's MRI had finally worn off, and he was more active again, lower on his dopamine again, and breathing over the ventilator again. He was also urinating around his catheter, so they took that out. Another tube down! They took him off of his pain medication, because that was mostly for the chest tube which they removed Tuesday. Another medication out! He'd had no more seizure-like episodes, either. He was so much more responsive--I could tell how badly he wanted to scream when the respiratory therapist (who happens to be in our ward, cool, huh?) was sucking the secretions from his lungs. The ventilator screen flashed "high minute expiratory volume" and sounded an alarm, which was his only way of expressing himself with that tube in the way. He was reaching his free hand up (apparently he had been moving around so much before we arrived that he had messed up his IV and they had to remove it) and trying to pull on the tube in his mouth. He was effectively communicating that it was time for the tube to go.

During morning rounds, the residents, fellows, and doctors were discussing how they were planning on extubating, and the lead pediatrician asked the resident what they were waiting for. She suggested clamping the tube and giving him a trial without it, but the pediatrician said, "Look at him, he's ready, I say take it out now." So the respiratory therapist jumped right in and did it--right then!! Aaron and I were so happy that we got to be there for that moment of hearing his first cry. He was SO hoarse from the irritation of the tube, but it sounded like music to our ears to hear Dexter cry.

It was pretty intense watching him try to breathe right when the tube was removed. His respiratory rate was still fine, but his oxygen saturation kept going down and down to about 49%, so they were giving him blow-by oxygen and I stood there and prayed silently but mightily that he would just learn to breathe effectively so that they would not have to stick another tube down his poor little throat. The therapist assured me that it just takes them a while to get used to taking deep breaths on their own since the ventilator has been doing that for him, and gave him a nasal cannula (one of those little oxygen thingies up his nose) to give him a little boost during his transition. His oxygen saturation went back up and Dexter settled down. He looked so free and so much more content without the aggravation of the tube. Aaron and I were ecstatic!! He had been making baby steps of progress, but this felt like a leap--he can breathe on his own!! I hurried down to where my mom was waiting with Xander and Elodie to pick me up so I could get lunch and a nap before going back. When I told them the news, Xander started clapping right away and said, "Yaaaay!! Dexter can breathe!!" and Elodie joined in the clapping. It was so sweet! Xander really does seem to understand what's going on. And Elodie follows his lead. With that reaction, we all had to go back in the hospital so they could see their brother without a tube in his mouth. The nurse had flipped him over onto his stomach for the first time, so Xander and Elodie actually got to touch his back where there were no tubes or IVs. Eldoie love dit and kept asking in her sweetest voice, "Tan I touch baby Dexter's back adain?"

Thursday morning, when Aaron and I were praying together, he specifically prayed that Dexter's tube would be removed today. What a prayer of gratitude we said and felt this afternoon! I know the Lord hears us. Thank you all for your prayers and support in our behalf. We feel it and need it!

Day 4--Whew!

Wednesday morning Aaron and I went together to see Dexter, and then Aaron had to go because he really had to get back to school that day. So I was by myself with Dexter and he was not looking very good. He was so sedated. He wasn't breathing over the ventilator, meaning extubation was not happening today. And his blood pressure kept dropping, meaning they had to increase his dopamine again and again. It was so discouraging and as I sat there, watching his numbers on the screen, I just cried and cried. I understood just how overwhelming it was for Aaron to be right there with him when everything was so critical on Sunday. It was a rough morning for me.

I went to wash my face and pull myself together a bit, and I looked in the mirror with my puffy eyes and tear-stricken face and laughed as I asked myself a question from the scripture that's become our theme during this trial--"Does this look like the face of someone who is 'cheerfully submitting to all the will of the Lord?" Mirien had paraphrased these verses from Mosiah 23 and 24 when she called us with encouragement on Monday.

21 Nevertheless the Lord seeth fit to chasten his people; yea, he trieth their patience and their faith. 22 Nevertheless—whosoever putteth his trust in him the same shall be lifted up at the last day. Yea, and thus it was with this people. 13 And it came to pass that the voice of the Lord came to them in their afflictions, saying: Lift up your heads and be of good comfort, for I know of the covenant which ye have made unto me; and I will covenant with my people and deliver them out of bondage. 14 And I will also ease the burdens which are put upon your shoulders, that even you cannot feel them upon your backs, even while you are in bondage; and this will I do that ye may stand as witnesses for me hereafter, and that ye may know of a surety that I, the Lord God, do visit my people in their afflictions. 15 And now it came to pass that the burdens which were laid upon Alma and his brethren were made light; yea, the Lord did strengthen them that they could bear up their burdens with ease, and they did submit cheerfully and with patience to all the will of the Lord.

And believe it or not, right there as I talked to myself and laughed at myself in the mirror and prayed again for emotional strength, I felt strong again. I felt peace and reassurance. And it stayed with me as I went back to Dexter. Even though he was still so sedated and dependent on medicine and machines, I felt faith and gratitude and a reassurance that the Lord's will was being and will be done. And that was my miracle for the day.

Day 3 for Dexter

Tuesday brought good news and a lot of hope. When I checked out of the hospital after lunch, we were spending time with Dexter and he was doing so well at breathing over the ventilator and his ventilator settings were so low that they said he was ready for extubation--removing that bothersome tube down his throat! And then the nurse said he'd be ready to try eating breast milk! After his chest tube had been clamped overnight, they took an X-ray of his chest to see if the pneumothorax had returned without. He looked good, so they removed the chest tube!! He was also successfully going down on his dopamine dose, meaning he was getting a little less dependent on it for keeping his blood pressure up. Since he was more stable, they also decided that he was ready for his MRI and they scheduled him in for the late evening. Unfortunately, they had to keep the trachea tube in for the procedure because he had to be completely sedated, and that was safer when there was a machine to breathe for him. But we were so encouraged--the day before, they had made it sound like it would probably be a week before he was stable enough for the MRI. We feel so grateful for answers to the MANY prayers that are being said for little Dexter.

Thursday, January 8, 2009

Day 2 for Dexter Joseph Dahle

Early Monday morning, say around 2:30 as I was pumping milk for our little boy, I was thinking of how hard it was to be pumping instead of nursing and snuggling my sweet baby. and then I thought of him, and how much harder this was on him than me. I thought of all of the afflictions he'd endured since birth, and I thought about people in the scriptures who had endured afflictions. Joseph, son of Lehi and Sariah, who was born into so much affliction. And then I thought of Joseph who was sold into Egypt and all that he endured, and then the afflictions Joseph Smith endured even as a boy. "Dexter Joseph Dahle would be a good name for him," thought I. Aaron and I talked it over throughout the day, and by evening, we had agreed and we wrote it on his birth certificate forms just to make it official. It's just right for our little guy.

Late Sunday evening, the specialist had read the ultrasound of Dexter's brain and hypothesized that some "event" in utero had caused a bleed in his brain, a sort of baby stroke, he called it. He ranked the severity at a 3 on a scale of 1-4. Of course, the cause was unknown, ranging from an infection to twisting the wrong way. The brain had healed from this event to some degree, leaving its print on the brain. The ventricles that store spinal fluid were enlarged. He gave no suggestion as to what this might mean for current or future brain function. The ultrasound didn't really answer the question as to why Dexter won't breathe on his own or regulate his own blood pressure, so they decided to do an MRI, but they can't do it until he is more stable, because he has to be moved to a different floor for an MRI. They make it sound like it won't be for a while--a few days at least.

Dexter had a couple of "seizure-like" behaviors, so they decided to give him seizure medication, Phenobarb, too. Just like with the infection thing--they don't know if he has one, but they've been giving him 2 different kinds of antibiotics, just in case he does. Plus he's on pain medication for the chest tube discomfort. And he's dopamine dependent to keep his blood pressure at a safe level. The poor little guy!

Xander and Elodie got to meet their brother for the first time, too. Xander seemed a little overwhelmed by the whole environment and was pretty quiet. He just said, "He looks sad." Elodie is too young to be as sensitive to that, and just said, "ohhh, tiny baby."

It's a Boy!

January 4, 2009

On Sunday morning, contractions started to increase in intensity, but after the embarrassment of leaving the hospital still pregnant last week, I wanted to be really sure. So we went to 9am sacrament meeting. And after about 5 minutes of squirming in the pew, I realized that these type of contractions were better had in a hospital than at Church. So we took the sacrament and headed right over to Melayna's house, where she grabbed the kids curbside and we made it to the hospital a little after 10:00. But let me tell you, with contractions get increasingly more intense, that was a worrisome ride, even for a third-time Hippobirther like myself. They called me a 6-7 and admitted me to Labor and Delivery, where I was so GRATEFUL for the tender mercy of the Lord--my absolute favorite midwife was on duty again! Susan is definitely the best! All went well and at 1:19, our sweet little boy was born!! The Neonatal team was available because of the brain abnormality they'd seen in ultrasound (see last post), and even after they sucked the junk from nose and mouth, the little guy wouldn't breathe. He tried a couple feeble gasps as they puffed air at him and tried all their tricks, but he wasn't catching on to the new art of living in air. They resuscitated him successfully and gave him some oxygen, and he pinked up perfectly. They brought him over to me and let me touch his perfect little face and when I talked to him, he actually made his first attempt at a weak little cry! It was so sweet. He looked so perfect and pink and healthy, it was hard to believe that he was being rushed down to the NICU, except for the tears streaming down my tender husband's face. I wish we would have had our camera out and ready to catch that brief moment that I remember when our little guy looked so perfect without any tubes or IVs.

But you can still tell how sweet he is, can't you? After several attempts (apparently the little guy was a fighter), they got a tube down his trachea so the ventilator could breathe for him. It was so hard for Aaron to stand there and watch, especially since he had a Neonatology class last semester and knew just how critical the situation was. They proceeded to put an IV in his umbilical cord and after many attempts, got an arterial line in his hand to more accurately monitor the low blood pressure issues he was having. Soon, he was having more trouble, and they found that the resuscitation had punctured a small hole, which they call a pneumothorax, in his flexible little lungs and they had to release the air in his chest cavity with a chest tube. Just in case, they put a needle in his other hand to be ready for any other medication he might need. They also did an ultrasound of his brain, right here at his bedside, to check the concerns they had from his prenatal ultrasounds. Needless to say, he had a pretty rough start to life!!

We called my parents and before I even got to see the little guy again that night, Grandpa and Dad had given him a blessing. Then Aaron got a blessing from my Dad, and when he came back into my room, the change was visible. His countenance exuded strength and faith, whereas before he was tender and tearful and somewhat overwhelmed.

As I sat in the room while they whisked Dexter off to the NICU, Aaron's PA classmates (we invited as many as wanted to witness the birth--5 were there) stayed with me and kept me company. In a situation like this, those little things are really nice. It was strange and sad to sit there, having just given birth, without my baby. But I felt a peace and a strength far beyond my own. I felt the assurance that no matter what happens, all will be well. Again the theme of Elder Wirthlin's "Come What May and Love It" talk came to mind.,5232,23-1-947-9,00.html Throughout the evening, I pondered on the 4 principles he highlighted--Learn to Laugh, Seek for the Eternal, Remember the Principle of Compensation, and Trust in God. It was just what I needed. As I went to sleep that night, I thought how grateful I was for the Lord's help in maintaining composure that day despite emotions being so close to the surface--a crying headache was the very last thing I needed as my body was recuperating from delivery.

Aaron and I were really a good team that day--when one was weak, the other was strong, and it really helped! Seeing our brand new little boy with tubes and IVs poking out everywhere was a hard moment for me that day, but that was after Aaron had been given a blessing and he was just the strength I needed. Once again, I am SO grateful for God's omniscience and omnipotence, and even more for His LOVE. I know He loves us. He is taking such good care of us in this time of trial. I know that we are all in His capable hands and that everything will work out. And even though I'd love to know how and when things will work out, it's even more important to know that they will work out.