Saturday, January 31, 2009
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
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
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
Tuesday, January 27, 2009
Monday, January 26, 2009
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
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
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
Thursday, January 22, 2009
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
Tuesday, January 20, 2009
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
Sunday, January 18, 2009
Saturday, January 17, 2009
Thursday, January 15, 2009
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
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!!
Tuesday, January 13, 2009
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.
Monday, January 12, 2009
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
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
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!
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
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!
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!
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!
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.
Thursday, January 8, 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. http://lds.org/conference/talk/display/0,5232,23-1-947-9,00.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.