Tuesday, April 29, 2008

Tuesday

Mikan is in about 65% oxygen. He is on the jet vent but is breathing substantially on his own. His weight is around 4 pounds and 8 ounces (approximately 1/4 of a J.T.). Mikan is doing his part to grow before the next round of steroids while Jenna is doing her part to provide adequate nutrition and I am doing my part to help remind us all that we should enjoy Mikan not being a middle schooler.



Great Grandma Swinford and Aunt Cindy visited for dinner tonight. We are continually thankful for the support we are receiving from all locations.

Monday, April 28, 2008

Monday

Mikan is back on the jet vent now. His oxygen requirements went up to 75% last night and remained this morning. He is now in 80% oxygen and holding steady. They altered the jet vent settings a couple of times today in efforts to improve his carbon dioxide levels which had modest effects. Mikan has the doctors experimenting. Mikan may get a second round of steroids earlier than originally planned if his status continues to decline much further.

Does anyone know what the March of Dimes does? So far, I've seen that they offer support groups online, fund research, and provide information online. It seems like they do a lot of advertising also. They also have pictures of "premature" babies without any tubes or cords attached to their bodies. Maybe just a feeding tube. Realistic.

Mikan is cute. If you have not seen him in person, he is remarkable. He does this thing where he does a mute cry for about 3 seconds and then doesn't hear himself so he stops while transitioning into a yawn. He also does this thing where he arches his back in pain looking like he could roll over, but he is just bearing down on his ventilator tube. He also does this thing where when you hold him it feels like the ventilator has popped out of his body as he farts. I enjoy blaming any odors on my son.

Sunday, April 27, 2008

Sunday

Things remain pretty much the same. Mikan's carbon dioxide levels remain high, therefore his vent pressure was increased a little. He looks good, but blood gases continue to show a deficiency in his respiratory system. He has continued to gain weight. Last night he was 4 lbs. 2 ounces. He is starting to look more like a baby and less like a fetus.

Yesterday, the weekend doctor described a child who no one thought was ready to be extubated, but pulled his tube out accidently. They decided to put that child on a c-pap instead of a ventilator and ended up never having to be on a ventilator again. Personally, I think Mikan would survive extubation. Just get the tube out of his throat and let's see.

One thing Jenna and I have noticed as a positive is the baby care knowledge that we are amassing during this period. Being first time parents, we are enjoying our "extended internship" with professional child care providers to learn from. Also, handling a 1, 2, 3, and now 4 pound baby gives Jenna and I confidence and no fear of the small. No one can say "You really shouldn't handle an infant like that." If they do, we can shoot back with a "Really? You've handled a premature baby that's been on a vent for 2 months? Oh, wait, you haven't. That's right."

The weekend doctor gave Jenna a heart to heart about spending more time out and taking care of herself for her own sanity. First of all, he isn't our regular doctor. Second, staying at the hospital has allowed me to see Mikan much more than otherwise. Third, if Jenna were at home what would see be doing? His point was that it will still be awhile. All indications point to mid-June to early July. However, as long as I am in school, we will try to stay at the hospital. I like seeing him in the mornings and not having to drive home late and get up extra early.

Saturday, April 26, 2008

Mikan's First Bath Day





Mikan is really missing the roids, although he won't admit it. His oxygen is back up to 60% and his vent rate is 25 breaths per minute. He had bad blood gases this morning and afternoon. The doctors don't know how to fix him. One doctor this morning referred to Mikan as a "puzzle" after staring at his vent and making several changes that weren't very effective. That was comforting. He remained pretty steady for the remainder of the day.

Yesterday Lindsey and David were in town from Atlanta and came to visit us. The mobile they brought is in Mikan's bed. I think he likes it. He hasn't complained yet.

Today was Mikan's first tub bath (as opposed to a wipe down with a rag). The nurse spilled water all over the floor, herself, and his bed in the process of bringing the tub to the crib, but overall (despite the crazed look from the pictures) we think he enjoyed it. He didn't cry, he just appeared shell shocked.

Friday, April 25, 2008

Friday Night

He is still on the ventilator. His carbon dioxide levels continued to be too high for extubation to take place. His steroids have been discontinued to give him some more natural time to grow new strength and lung cells (alveoli).

Mikan is currently on about 45% oxygen. His PEEP is 6 and his SIMV pressure is 45. The tendency is too need an increase in support once the steroids have been discontinued. We'll see.

Mikan told me that steroids were not fair. He did not want an asterisk by the date that he got off the vent. Therefore, he plans on making lots of progress without the steroids to prove how much of a man he is. If not, he is going to be a Cal Ripken Jr. in terms of time on the vent.

Wednesday, April 23, 2008




Mikan is in about 35% oxygen and at 15 breathes per minute provided by the ventilator. The carbon dioxide levels in his blood were too high to try and extubate him today. If his gases are good tomorrow morning, they may try and extubate him tomorrow. Otherwise, he would be taken off the steroids and we would wait awhile before trying to get him off the ventilator again.

Our hopes are for extubation tomorrow. So we're praying for good gases and a good lung x-ray. After that, we're hoping for a strong showing for his lungs once the tube is out. I think he'll feel better once the tube is out of his throat.

Tuesday, April 22, 2008

Tuesday

Mikan is now around 35% oxygen and a rate of 15 breaths per minute. The doctor wants to take him off the vent either tomorrow or thursday. He is currently weaning him off of his pressures. He had a few good blood gases, so his pressures have been reduced. We remain hopeful that everything will work out well although we know it is possibility he will need to be back on it. Mikan was also switched to 30 calorie breast milk. Lately Mikan has been gripping his tubes and trying to yank them out of his mouth. Hopefully this is a sign that he is ready to do some breathing on his own.

Tomorrow I am being interviewed about how much we appreciate the Ronald McDonald house. I'm not sure if it's for the news or a video. I feel like being in the NICU has made us celebrities. First a video, then a brochure, now the news. What's next? A movie deal? Does someone want to buy the rights to our story? Let us know if you do.

Monday, April 21, 2008

Steroids: Day Three

Mikan looks really good lately. He is breathing a lot on his own. his vent rate was reduced to 15 breaths per minute and his oxygen is at 40% this evening. He is alert more often and doesn't get as irritated when he is touched. Despite his progress, the doctors still seem to think he may fail the first time they try to take him off the vent, which will most likely be this week if he continues to do well. If he fails, then we will most likely be in for an even longer haul. This will mean we wait a few weeks for him to grow, then he will be on a continual dose of steroids. Unfortunately, this might also mean that he doesn't go home till the end of June since he can't even begin to try eating until he is off the C-Pap (which the doctor estimates he could be on for a month), which is one step down from the vent. But we're hoping for once Mikan will surprise the doctors with positive instead of negative progress.

Sunday, April 20, 2008

Sunday

Mikan got another round of dexamethasone today. We are wondering if it will show up in his urine test of the Pie Olympics (Strawberry, Black Raspberry, Blueberry, Peach, and Apple) this summer. He is just under 17 inches long and right around 4 lbs. Both of these numbers are between the 10th and 25th percentiles. His rate on the vent was dropped from 25 bpm to 20 bpm and his oxygen requirements are in the upper 40's. These are signs of improvement.

One nurse thinks that Mikan's slow progress is the result of the ND jersey over his crib. I agree. If getting off the vent were the equivalent of winning a bowl game, then we're gonna be here awhile (please be offended, Jimmie Clausen and Charlie Weis). The nurses recommended a Bears or a Colts jersey.

Saturday: Day One of Steroids

Well after receiving dose #1 of steroids, Mikan has already shown a little improvement. Nurse George weaned him down to 40% oxygen today. He started at 65% this morning. Nice job George...or maybe it was the 1/2 cc of roids. So far no visible signs of "roid rage"; however, we've been warned that it may come soon. Mikan finally has his own crib now. it is a new one and less scary looking than the chrome one. After sharing his room with a term baby with gestational diabetes this morning, he is back to living solo. He likes it better that way. Those crying babies without vents get irritating sometimes.

The Kartje's came to New Carlisle to help us get our house together. Their work was greatly appreciated. We painted two rooms and organized Mikan's nursery. He now has a crib and changing table. We're ready for him when he's ready for us.

Friday, April 18, 2008

Look Everyone, I Do Have an Upper Lip.






Well, Mikan received his final dose of antibiotic today. Tomorrow is the big day for steroids. We hope they work quickly. The baby next to Mikan is a 25 1/2 weeker, born 2 weeks after him. She is getting off the vent tomorrow. It's extremely discouraging to see this happen around us even though we are happy for the parents and the babies. It just reminds us that Mikan is not following the average track, although everything he experiences is "common." George the nurse seemed to think that Mikan would be ready to be off the vent early next week. But he also predicted he would be off 3 weeks ago.

John commented today that Mikan's favorite song is "International Harvester" since he is "chugga lugga luggin' 5 miles an hour." Mikan was 4 lbs exactly yesterday. He's quite the porker compared to his earlier 1lb 12oz pictures. It's still hard to tell what weight is fluid and what weight is JT style.

Thursday, April 17, 2008

Thursday

Mikan has remained consistently in about 60% oxygen and on antibiotics. Steroids are the plan for Saturday. Jenna had her last spring class at IUSB tonight. The weather was nice and she went for a run before class. Here is structure of the antibiotic gentamicin.



It works by stopping proteins from being made by the germ. One of the germ's ribosome subunits gets bound up by the antibiotic. Saturday we'll have a synopsis of the steroid, dexamethasone.

Wednesday, April 16, 2008

6 weeks, -6 weeks, or 34 weeks


Currently, Mikan is in 66% oxygen and still on antibiotics. He will remain on antibiotics for two more days and then possibly start steroids on Saturday.

Jenna had her 6 week check up today. She is cleared for normal physical activity. However, because of the vertical uterine incision, there is a 10% chance of uterine rupture with a future pregnancy. We are working on processing this information.

Tuesday, April 15, 2008

Monday and Tuesday

On Monday morning Mikan required around 80% oxygen. In mid morning the doctor adjusted some of the pressure settings and he finished the day at around 55% oxygen. He has been more consistent over the past 48 hours in terms of his oxygen saturation. However, he looks pretty puffy after the last blood transfusion. His total output is being measured for this reason. The NICU has a special isolation room for babies with infectious diseases. Because this room is not being used by any infectious babies right now, Mikan gets to use this room. This limits the noises and light which sometimes irritate him and me.

Mikan will be on antibiotics until the end of this week. He may or may not need steroids once the antibiotics have run their course. We'll see. The doctor is leaning toward the fact we'll have to use them.
Thanks for your continued thoughts and prayers.

Sunday, April 13, 2008

Sunday



I don't know how to pronounce much less spell the bug found in Mikan's trachea today. The doctor said it is a bug not usually found in the trachea, but the antibiotics he has been taking are known to take care of it. So right now Mikan will be on the antibiotic for at least another 5 days, being watched closely. The doctor was concerned because both the nurse and I noticed Mikan looked a little more lethargic today than usual, but his vitals appear normal. He is also a little worried about Mikan's urine output, which is low. He is still retaining fluid. This may be due to hyperexpanded lungs. Because his lungs are hyperexpanded, the blood flow to and from his heart may be less than normal. This lessened blood flow is thought to decrease the kidney flow and thus the urine output. Got it?
His vent settings were slightly altered again today and he will be closely monitored throughout the evening.

Mikan was once again placed in a crib today. However, one of the wheels broke and he had to be moved out of it soon afterwards. The hospital didn't have any extra cribs, so he was put back in a warmer (not an isolette). I got a few pictures before this happened though. Yeah, the NICU is out of cribs. Yeah, the NICU is out of cribs.

Yesterday

We neglected the blog last night. But here is a quick update. We'll fill in the rest later. Mikan's oxygen needs went way down yesterday, which was exciting; however, an initial lung culture report said something was growing in the culture. The doctor put Mikan on antiobiotics through an IV just in case he had pneumonia or was infected. We expect to hear the official report of the lung culture sometime today.

Friday, April 11, 2008

Friday


Still no progress. Well, I guess we had a decent blood gas this afternoon, so perhaps that's progress. At least we bought another day closer to 34 weeks that Mikan didn't need steroids. Another day to grow and gain weight. The doctor fielded our questions for about 25 minutes this morning in the NICU lobby. He said he didn't see Mikan going home in the next 6-8 weeks and it could possibly be much longer. It may be easier to tell once he gets off the vent just how long we are looking at. It is likely he may go home with oxygen and a heart monitor.

We had a tornado watch in our area today. The nurses said that if there was a tornado that hit the hospital, they would grab the healthiest babies first (they have these vests with pockets that allow one person to carry several babies at one time) then they would grab the other babies with the leftover nurses. So, not only is Mikan's vent causing him breathing problems, but it also would hinder him in a natural disaster.

The doctor did say that the second most important factor that affects the baby's long-term well-being (after their original gestational age) is the mother's formal education. So I'm currently looking into ways to accelerate the completion of my masters program. :)

Jan and Mark visited today. Mikan did really well during his assessment when they were here. Jan thinks her calming presence was the main factor. We wish Jan could use her presence to make his lungs work a little more efficiently.

Thursday, April 10, 2008

Thursday

Mikan continues to fluctuate on his respiratory support. The doctor adjusts settings every once in a while to see if Mikan enjoys them. Tomorrow we are going to talk with the doctor about possible longer-term issues with babies with chronic lung disease. Today we bought another day where his requirements really didn't go up so there were no steroids given.

Being in the hospital for around 8 weeks, we have favorite nurses and not so favorite nurses. Today we had a not so favorite nurse. At this point, it is frustrating to get a nurse that has not had Mikan at least a couple of times in the past. Nurses who have had Mikan, know him, they know us, and we're adjusted. Its tough to watch a different nurse relearn his quirks everyday. Namely, he likes to keep his feeding tube open to pass gas. He likes to be handled gently. He doesn't appreciate loudness. He responds better to the Yoda blanket than the Darth Vader blanket.

The doctor told us today that Mikan will be in the NICU for longer than originally anticipated. I think this is because Mikan knows his mom likes to stay in a place that is warm, but his dad wants to keep the house thermostat at 50 degrees until the summer. Or there is something wrong with his lungs. One of the two, depends on how you interpret the lung x-ray.

Wednesday, April 9, 2008

33 Weeks, or 5 Weeks, or -7 weeks

Mikan's lung x-ray is still very cloudy. He has chronic lung disease, which we already knew. He requires about 60-70% oxygen this evening. Today, there was a point where his oxygen requirements were down to 45%. It is difficult to understand why this fluctuates so much. Apparently, this is symptom of prematurity. Previously, we thought this was a symptom of the pneumonia, PDA, or fluid retention. Now that those three possibilities are out the question, all we can do is give him fluid restricted nutrition until he gets better, gets steroids, gets some other Intervention. I was able to look at the lung x-ray today and see lots of cloudy white tissue showing fibrosis (significant although not life long) of the lungs. There was not much darkness, showing where air is freely flowing like normal.

By fluid restricted, I mean that he gets some powder with his breastmilk that increases the calories without increase the volume of the milk. Think of it as milk with a tablet of enhancer dissolved.

Apparent Dislikes: Being touched, being measured, being poked, other babies crying, mean nurses, other baby's billy lights, loud conversation, more than one piece of stimulation at once.

Apparent Likes: Projectile pooping, passing gas up his feed tube, flipping the bird to nurses, exercising his eyebrow muscles, taking his time, his mom's breast milk.

Tuesday, April 8, 2008

Tuesday




Ok, so....never mind about the crib. This morning Mikan was acting pretty irritated, and the nurse thought it may have been due to the noise, so they stuck him back in his box. He was maintaining body temperature fine, but they didn't want him burning any extra calories to do so. He needs enough energy to develop his lungs. The doctor told us this morning that 9 out of 10 babies born at Mikan's gestation would be off the vent by now. That was real reassuring. He said if his oxygen needs continue to rise, he may consider giving him an extra small dose of steroids just to help wean his needs a little before he gives the recommended dose at 34 weeks. He switched to a different type of vent today that helps aid the breaths he initiates a little more. So far today his blood gases were good and his oxygen needs slightly decreased on the new vent. Mikan also had an eye exam tonight. His eyes are immature, but that is typical, so far no signs of retina detachment.

Adrienne visited today and we went out to lunch at CJ's Pub. John and I are trying to get out more since he is on spring break. Anyone up for going to see Semi Pro?

Monday, April 7, 2008

Monday

Unfortunately, Mikan's oxygen needs remain high. The doctor was explaining all of the different ways the steroids could be administered to him. Regardless of the dose, nothing will probably happen for the next several days. Our day nurse was roughing Mikan up today, a little more aggressive with him than we were comfortable with, jerking his limbs around joking about being clumsy and bumping his ventilator tubes out of place. I laughed nervously while secretly thinking, "What's so funny about my baby not breathing! Give him his air back and leave him alone!" I suppose he has to get used to it sometime. But today he was taken out of his isolette and placed in a crib. He no longer lives in a clear box. Instead he has a chrome crib. John calls it a jail because of all the bars. I call it a pimp crib. We'll post pictures tomorrow. He is maintaining his body temperature well and now we get to dress him all the time to keep him warm. All of his preemie outfits are huge, but he's doing a great job looking ridiculously cute in everything.

Today Nina Kartje visited and gave Mikan a pep talk on getting off the vent. So far this evening while we've been holding him his oxygen has been down a little. Perhaps it is working. Or maybe he'll have to get "juiced up" in a week. We'll see.

Sunday, April 6, 2008

Sunday



Things remain the same. Mikan still hasn't made any progress on the vent. He is still fluid restricted so that he can lose the extra weight he has gained. He looks much better though and is still tolerating his feedings. The doctor keeps talking about steroids for Mikan within a few weeks. Apparently these steroids are different from the steroids that were injected in me while I was on bed rest. The steroids I received worked because they were meant for brain development. The steroids Mikan would receive would help to heal the lung scarring he's received while on the vent. There are still side effects to the steroids; however, the risk appears minimal. The longer Mikan is on the vent, the longer his lungs will continue to be damaged as well.

It was good to visit with the McCoys yesterday. Having all four of them fight over who gets to sit next to me in the car will never get old. I think a few of them even tried to call "walking next to Jenna wherever we go for the rest of the day!" I'm just a little spoiled now with the attention. I hope I can cope ok and my self-confidence won't take a nosedive when they all grow up and lose interest in sitting next to me wherever we go.

Saturday, April 5, 2008

Saturday

Sorry for not posting yesterday. Last night Mikan weighed 2 lbs. and 14 ounces. This is a good significant decrease from Thursday. Much of the loss is apparently attributable to the diuretic Lasik. Hopefully, this decrease in fluid retention will help his chronic lung condition. But as of Saturday evening, there hasn't been any progress. His vent rate is still 35 breathes per minute and his oxygen needs are around 50-60%. His excrement is still testing positive for blood. The doctor thinks this is simply a false positive test for infection, based on Mikan tolerating his feeds and remaining active. We are in a state of waiting for his lungs to heal and work more normally. All we can do is give him the best nutrition possible and wait. In a week and a half, we will have the option of steroids. Steroids at this point are proven to have long term neurological side effects.

Today another 28 week at birth baby got off the ventilator at 29 weeks. We're not sure how we should break this news to Mikan. My competitive juices started flowing we I saw the other kid's ventilator being removed.

Grandma and Grandpa Gensic visited on Friday with the McCoy kids. Saturday the whole McCoy family visited. We played some football at the College Football Hall of Fame.

We send congratulations to Sam and Jess on the birth of their new baby Evelyn Hazelda Gensic.

Jim Nance (it's not the Masters) and Billy Packer (I'm in love with the ACC) should not do the Final Four. Any other Billy Packer hater's out there?

Thursday, April 3, 2008

Thursday

Today, while John was at work, and I was safely snuggling Mikan, I watched another baby die. Right across the room, I watched as the parents sat through a procedure the doctor performed on their now 25 week old child (born at 23 weeks), I saw the moment something went wrong, the scurry of nurses and doctors, the establishment of screens around the isolette, the parents being escorted in and out, crying with the doctor at different moments, the pastor come in to perform a baptism, the staff at the nursery all joining in saying "The Lord's Prayer," and then the baby being carried out minus all the tubes to meet his parents in a private room. Afterwards, I saw the nurses carefully packing up all of the baby items in plastic bags, and breaking down all of the machines attached to the isolette. A little while later, some nurses brought the baby back and made moldings of the baby's hands and feet for the parents and put together another package for them with items like the heart monitor probes, and his tiny blood pressure cuffs. Screens remained around his empty isolette, waiting for an environmental team to come and clean it. Had Mikan not just been taken out of his isolette for me to hold, I probably would have been asked to leave. Instead I just heard the commotion of everything from behind the screens, gripping Mikan tightly and constantly checking his vital signs. Ironically, I was just sitting down talking with the mom yesterday in the Ronald McDonald room when another parent who used to have a baby in the NICU was reliving her story about her own 23 weeker. She told us "Don't worry, I had a 23 weeker and she is 4 months old now and doing fine. Everything will be fine." It's refreshing to hear those success stories, but the reality is that it doesn't happen for everyone. Experiences like that surely humble us. Our situation could be worse.

Mikan's chest x-ray looked much better today; however, the doctor still can't find a happy vent setting for him to keep him consistently stable with his blood gases. He said we might have to be talking about giving him steroids in a few weeks. I told the doctor that Mikan should be off the vent by then. He responded that I was optimistic.

Great Grandma and Grandpa Swinford visited today with Aunt Cindy. They saw Mikan awake and alert. Mikan lost 70 grams today after another diuretic. That is good. He will be receiving another one tomorrow to get rid of the excess fluid.

We send our Love and Prayers to everyone reading this.

Wednesday, April 2, 2008

32 Weeks

Mikan's doctor said his lung x-ray this morning still didn't look good. In a few weeks, if nothing has cleared up, we have the option of giving him small doses of steroids to help get him off the vent. However, these have steroids, including a higher risk of cerebral palsy, so the goal is to wean him off the vent before then. The doctor said we should "give Mikan a talk" or "smack him around a bit when no one is looking." His stools have tested positive for blood lately, but he isn't showing any other signs of the digestive infection (NEC), so the doctor isn't too (thanks Nikole) worried at this point. The nurses have been trying to get Mikan to suck on a pacifier while he gets his feedings, so he associates his full stomach with the sucking reflex. The video is an example of that.

Annette, Gil, and JT visited today. JT is huge. He almost weighs 14 lbs now. I can't wait till JT and Mikan can play together. Hopefully JT doesn't use Mikan as a chew toy.
video

Tuesday, April 1, 2008

Tuesday




Mikan's status remains pretty much the same. He is still tolerating his feedings, yet his oxygen needs remain higher than they've ever been. He is now 3lbs 2 oz, but the nurses still want him to lose weight. His chest x-ray this morning didn't look any better. The doctor wants to wean him off of the vent, but he isn't showing any signs that he is ready for it yet. On a brighter note, he is fairly close to being moved into an open crib. He has been maintaining his body heat pretty well.

Uncle Steve, Aunt Jo, Maggie, and Grandma Harbor also visited today.