Lots Going On...

Well, Emma has had a busy day. First, Emma has been off medication for over two days, and everything appears to be fine so far. However, they did check her trach aspirate for bacteria. The doctors expected to find bacteria colonizing the tube, and they did... the same bacteria Emma was just fighting off. The doctors could treat w/ more antibiotics preemptively, but the chance of actually getting rid of all of the bacteria is about zero. So, because Emma's lungs seem to be doing well, they took another course of action.

The doctors have started weening Emma's ventilator settings at a bit faster rate in the hope of being able to get the breathing tube out of her throat before she can catch another infection. How quickly they will be able to do this depends completely on Emma... they have already turned her rate down 5 (from 35 to 30). In order for the doctors to feel comfortable putting Emma on nasal CPAP, she needs to have a rate of 10-20 and a pressure of ~ 20/6 or less (currently she is at 23/6). The doctors are going to consider doing another rate / pressure change this afternoon depending on how well Emma is doing. It is exciting to see the ventilator rates changing (and Emma handling it so far)... Liz and I are very exciting about the prospect of having the breathing tube out of her mouth.

In addition to that, Emma has had another change in her feeding schedule (although not one I was expecting today...). Emma had been getting fed 20ml / 2 hours, and every four hours she would get "cares" (aka - temperature, diaper change, nurse would listen to breathing sounds, etc). Emma has been "upgraded" to getting fed 30ml / 3 hours, and she will get the basic cares every time she eats. While it doesn't seem like a big deal, it is a sign that the nurses and doctors are comfortable with Emma's progress. (note... our request that they get Emma on an eating every six hours schedule was scoffed at... I had to ask).

Other fun stuff... Emma got a bath Monday night, the SCN / NICU is getting very full (I don't know if they'll be able to handle any more babies... they had A LOT of admissions yesterday), so the atmosphere of the unit is much different than a couple weeks ago when there was 1/3 of the babies there is today... Emma is 33 weeks gestationally today (and 9 weeks, 2 days since birth)...

So, this could be an exciting week coming up for Emma. Let's hope that her lungs can continue doing well and that she can stave off any infections so Emma can get her breathing tube out.

Sunday...

Emma has had a pretty good week overall. She finished up her medicine tonight (yahoo), but, as history has told us, she has a good chance of getting sick again on Tuesday night. Fortunately, a couple things appear different this time - 1) she has a different type of infection this time; 2) Emma had had a lot of mucous in her lungs.... not so much anymore; 3) she seems much more active, alert and healthy than she had been.

On other fronts, Emma has had a great week. One big step... the nurses no longer have to weigh Emma's diapers... Sounds like an odd milestone, but it shows that the doctors have faith in her digestion and "waste disposal systems."

Emma also now gets a whopping 20ml of milk every two hours... which means she will hit a milestone next week... because the current milk "tubes" (I can't remember what they are really called) only go up to 20ml... so, Emma will be graduating to a bigger milk "tube".

Emma has been growing also... in fact, Emma is now over 1600 grams... meaning she has gained over a kilogram since birth! This is also good news because it means that the doctors will begin to ween her off of the isollette in the upcoming week or so... meaning she'll be in an open air crib before long!

Emma's lungs also continue to improve. As I think I last stated, she was at a rate of 40 breaths / minute and a pressure of 28/6... today she is at a rate of 37 with a pressure of 23/6.

So, Emma has had a big week, although the upcoming week will be just as big. First off, a bath tomorrow night. Then, we have to see how she reacts to being off her medication. In addition, the plan is to give Emma her "2 month" immunizations. Also, the doctors are seriously looking at giving Emma another go at nasal prongs (nasal CPAP to be exact) later this week... So, another big week is coming up, and we are excited to see what happens...

A Note From Emma

Emma wanted me to post this... Emma would also like to thank her Grandma Sullivan for helping her on this...

Eye Exam

Emma has had a great couple days. She continues to grow (almost 1500 grams), she is eating more (18 ml / 2 hours) and she is breathing better... but not great. Luckily she has been doing well enough that the doctors have come down on her vent settings some, but she is still at a higher pressure and rate than she was before the big spell a week and a half ago. However, she is taking baby steps.

Emma continues to be on antibiotics for her infection, which I'm told is a gram negative rod. That means something to someone I'm sure. She is doing well on the meds and is alert and attentive as ever.

Emma did have her first eye exam this week... and while the doctor told us that Emma's eyes are still premature (which we knew they would be), he did say that he was surprised to see that Emma's eyes are in zone 2. There are three zones of blood vessle growth in the eyes, with zone 3 being 100% grown / matured. From what I can gather the doctor (and everyone else) expected Emma to still be in zone 1... but, luckily she has good eyes.

Emma after a bath!

Emma sneezes like her dad... it's a full body ordeal.

This view is from one of the times Liz is holding Emma. Emma is situated on Liz's lap so that they can see eye to eye and talk. From what I've heard there has been some pretty serious discussions going on.

Emma looked so distraught after finding out the doctors didn't increase her food supply two days in a row.

And for those of you who read until the end...

Sick Thoughts

I'm not sure if I'm the first father to be relieved that their child has been shown to have an infection. It shounds wierd to say, but it's true.

As I said earlier, Emma has been sick off and on lately. Unfortunately, every time she gets better and is taken off her meds, she gets sick again two days later. Well, Emma was tested again on Friday after her spell and an infection was found... but not the one that was affecting her previously. So... the doctors have changed Emma's medications appropriately to cover this new infection. We are hoping that the reason Emma kept getting sick was this other infection (which was hidden by the other infection she was fighting).

That being said, Emma is doing very well lately. Aside from her lungs she is growing and progressing nicely. She is over three pounds, and is up to 17ml of milk every 2 hours. She is very active, and she is at the point that when she is laying on her back she will soon have to be swaddled to keep her calm (otherwise she constantly kicks off her blankets, pulls on tubes, and tries to move around... fun to see, but she needs to keep her tubes in and work on growing and healing). Irregardless, Emma seems like she is going to be an energetic child.

Emma's lungs continue to improve, and she is breathing well today. Her ventilator settings are going down, but are still not yet where they were before her Friday spell. However, small steps are small steps, and all we can ask for is improvement over the long term.

Thoughts

To begin... Emma is fine. Onto the the thoughts...

Over the past couple weeks Emma has had a rough ride. Since her surgery she has not been able to shake her lung problems. This has been pinacled by her problems last weekend. As I mentioned before, Emma was doing better. However, she had another spell this morning, although not near as bad as this weekend. The doctors increased her ventilator rate and pressure, and Emma has since stablized. That doesn't mean it didn't scare us pretty badly though.

Emma's doctors are still stumped as to what is causing her lung problems. They have discussed a number of potential causes, from pnemonia to excess water in the lungs to her lungs being tired to just about anything else. Unfortunately, all we can do is take it one day at a time. Emma's doctors have told us that the best cure for Emma's lungs are growth and rest. While I don't think I can say that this has been the worse month of my life, it has been definitely one of the most stressful for both Liz and I.

That being said, it is easy to not pay attention to the rest of the outside world. Over the past couple weeks there have been some new additions to the special care nursery, and given that we are up there for "seniority" as far as parents go, we have spent time talking w/ the newer parents about our time, our struggles, and what we have to look forward to (note... we still do the same w/ the parents that have been there longer than us... it's pretty helpful and reassuring).

As a result of our conversations with newer parents my eyes have "reopened" to the rest of the world in a way. It is very easy for me to get involved in what is going on w/ Liz, Emma and I and to shutout the rest of the world. I have started to"remember" (for the lack of a better word) that everyone has a lot going on in there life, both good and bad. Whether it be a wedding, or a friend fighting cancer, someone's parents struggling with a medical problem, old age, new children coming into the world, someone taking steps to take back their life from an affliction or any other event, people do persevere. I get strength in knowing that. So, for everyone out there, know that we appreciate your thoughts, emails and prayers. And we are thinking of you and your family, and hope everything turns out for the best.

Mom and Emma...

Awake!

Asleep... but look how much hair I have!

Emma's hand v. Liz's hand

Family Photo

Another Busy Day

Emma had a great Monday (as was noted in an earlier blog), and a great Monday night. So, Tuesday became a very busy day. First off, Emma had another big weight gain (she is now ~ 1325 grams... closing in on the three pound mark, and over double her birth weight).

At rounds, the doctors decided to take a proactive approach since Emma was doing so well. Emma was taken off the high frequency ventilator and put back on the original ventilator. Her settings were up a bit from Saturday morning (rate of 40 instead of 35; pressure of 22/6 instead of 20/6). However, by Wednesday morning Emma was back to 35 and 20/6. Great job Emma!

In addition, Emma's blood cultures came back negative for infection, so her antibiotics were stopped and her IV was removed. The doctors also conducted two more tests to determine if Emma had any other infections: a unrine analysis and a spinal tap. For those of you who are not not neonatologists (or parents of premies), a premie spinal tap is very different from a spinal tap on a child or adult. For a premie, the spine has not extended as far down the body, so the sensation that Emma had during the spinal tap was (supposedly) no different from that of receiving an IV. The procedure is pretty common place, no pain meds are given aside from sugar water to make the babies happy. We were informed Emma barely noticed that the procedure occurred.

However, Emma did have some fun with the nurses and doctors. For both the spinal tap and urine collection Emma was placed on a sterile surface for the procedure. Both times (before the procedure started) Emma decided that the sterile surface was a perfect place to relieve herself. Liz and I say that it was her form of protest over having procedures done :)

After the urine and spinal fluid were analyzed, preliminary results show that there is no infection, fungus, or signs that Emma has or had meningitis. So, at this point, the doctors' diagnosis is that Emma's lungs are simply sick and need time to heal. We've been told that Emma's current condition is present in the majority of micro-premies. While that doesn't exactly make us feel better, it is good to know that Emma isn't any worse off than the average micro-premie.

Emma continues to grow and do well. Her feedings have been increased to 16 ml every two hours, and that rate is likely to continue to increase. Other than that, we just continue to watch her and hope she can get better... oh, and we're going to give her a bath tonight (hopefully she cooperates!).

This may not look comfortable to you, but it works just fine for me!

A bear on my back is a perfect substitute for mom or dad's hand!

Emma and her bunny...

Emma appears to be a big college basketball fan... She's cheering for the Badgers to have a good showing tonight against Purdue.



Next we have Emma with Piglet, part II. After checking these out click here to see Emma's previous pictures w/ Piglet.

Good Day

Emma had a good day overall today. Although we started out with a bump in the road (she had her pressure, amplitude and oxygen concentration all increased), she has worked it down and is in pretty good shape. In addition, due to the new ventilator type, the doctors have postponed giving Emma a spinal tap at this point. The doctors may still opt to give Emma a spinal tap at a later point. That being said, Emma did well today but her lungs have a lot of work to do.

Luckily, although Emma's lungs have been having struggles, there appears to be absolutely no effect on the rest of her body. She seems just as attentive as always, although she is sleeping more now. She has been gaining weight again (actually, she is now just under 3 pounds... 1326 grams or so!).

So, Emma continues to improve. We need to keep in mind that Emma's lungs are very delicate at this point. So, she'll probably have some more spells like she had this morning.

Mom taking Emma's temperature... Emma hates this (not when mom does it, but anytime anyone does it)

Emma sleeping after her busy Saturday night...

Emma still likes to look around to see what is going on...

Emma w/ her friends...

Again with the temperature taking! Don't I ever get a break?

Hope everyone has a great day! I'm doing fine today.

Busy Busy Busy

Well, I haven't posted in a couple days. Part of that was because I was busy w/ school stuff and some other things. Also, not much really happened w/ Emma from Tuesday to Saturday.

However, Emma did have a scary Saturday night. Liz was here in Madison with her family, and I was up visiting my folks and some other relatives. Luckily I was able to get back quickly to be there for Liz and Emma. For most of the day Saturday Emma was doing just fine (fine for her at least... some problems w/ her lungs, but nothing new). However, when Liz and Emma's nurse were doing 8pm cares, Emma started having problems.

Emma initially looked as if she had removed her breathing tube again. She was unable to get much oxygen regardless of what was done, and the oxygen saturation in her blood was dropping. The doctors got Emma to stabilize somewhat, and then they took some chest x-rays to check the placement of the tube. The placement was fine, but the doctors decided to change breathing tubes just to make sure that there wasn't a problem w/ the breathing tube that was in place. There was no problem w/ the old tube, and Emma continued to have significant struggles getting oxygen. In the meantime she was had some big drops in oxygen concentration in her blood, with her skin turning a blue-grey in front of their eyes.

The doctors then put Emma back on antibiotics and switched Emma to a different style ventilator. The doctors had to significantly increase Emma's ventilator pressure and oxygen concentration in order to get Emma to stabilize. In addition, Emma was given a blood transfusion.

At some points during the evening (before I arrived), Liz has told me that the doctors optimism diminished significantly, and the doctor's statements turned from "when she recovers" to "if she recovers".

Luckily, Emma began stabilizing last night around 2 in the morning or so. By morning the doctors and nurses had increased Emma's vent pressure (14) and oxygen concentration (98%) even further. However, the doctors stated that they felt that Emma was looking better... and what they needed to do today was just make it through the day.

Luckily Emma has done well since this morning. Emma's vent pressure is now 13, and her oxygen concentration is down to 42%. In addition, Emma has been eating again (yummy) and the food has been so calming for her that she no longer needs the sedatives she required last night. Overall, Emma looks very healthy (although tired... she had a tough night!). For now we are back to wondering how Emma is going to do for the next couple hours (instead of days), but Emma's progress so far has been encouraging.

The doctors continue to watch Emma very closely. Originally they thought that Emma might be suffering from another bout of pnemonia, but they aren't quite sure yet. (a blood culture was conducted and should start to tell us something on monday / tuesday). In addition, the doctors are considering conducted a spinal tap on Monday to see if their is any infection present in the spinal fluid. While I'm not sure if they are still considering this procedure, I am just happy that Emma is looking better.

On a side note, at the nurse shift exchange this morning, the oncoming nurse said that she heard Emma had hit a dump last night. The night nurse looked at the day nurse and replied "nope, she hit a big pothole." Both Liz and I are happy that the quality and dedication of the staff is what it is, and we are happy that they could guide Emma and us through what has been her worst day so far.

Today

Well, the last couple days have been busy in Emma's unit. She is no longer the smallest baby in the unit anymore. Three more babies came in in the last day or so that are smaller than Emma. One of the babies is doing well so far, and appears to be stable.

The other two babies were twins that were born very early and at a weight much lower than Emma. Unfortunately, neither survived past two days of life. It was a difficult situation, and it obviously hit the affected family hard. Today was incredibly awkward for me, as I was holding Emma while she ate knowing that a baby was dying less than fifty feet from me. I know that Emma is a miracle. I know that not all premature babies survive. However, there is some guilt within me when I am holding a baby that was given a small chance to survive when another baby is losing its fight for survival. I can only hope that the family has a strong support system and will be able to pull through this together. As for me, the passing of each of the four babies since Emma has been born has been difficult in different ways. That being said, Liz and I are doing well.

Emma continues to grow and do well. She is awake for long periods of time lately. The doctors have also changed some of the approach to Emma's vent lately, and we hope that it produces dividends. Overall she is doing well and is looking good.

Emma w/ bed head

Emma had her IV moved today... no more head IV, but we welcome the return of the club!

Emma getting ready to cheer for the Badger Basketball team

Emma celebrating the big Badger win over Ohio State

Two Days in a Row

Ok... back to back posts... I'm back in the swing of things!

Emma has been doing well today. She continues to grow (1055 grams! She only needs to gain ~ 10 more grams until she has gained a pound!). She also continues to need less and less added heat via her isolet. Good job Emma!

However, it has not been all fun and games. Well, at least not for us. It seems that Emma has started a new game. Emma has a monitor that measures the saturation of oxygen in Emma's blood. It works well... except when one of her other monitors is not working or if she is moving too much. What usually happens when her oxygen saturation level gets too low (or destats) is that it goes back into the normal range (on it's own) in a relatively short period of time. However, it still beeps for all to hear. Well, Emma's new game is that whenever her nurse, Liz, or I leave the bedside, she destats until we come over and then she returns to normal levels. This pnenomenon occurs even if Emma is sleeping or her isolet is covered. We're not sure what is going on, but Emma's nurse tonight decided to do all her paperwork at Emma's station... just to humor her. I hope she grows out of this before she goes home.

Not many pictures tonight, but they are good. Enjoy!

Kilo Club

Well, Emma did it. She now weighs one kilogram. She is well on her way to being a big girl! Liz, the nurses and I all were pretty excited about Emma's latest achievement. (For a reference, she was born at 610 grams... and full term babies are often around 3600 grams)

Emma's key to success... just eat and sleep and watch the pounds pack on!

Emma and her pink bear

Emma in her weekly measuring session...

One of Emma's favorite activities... grabbing onto any tube she can get her hands on...

Emma also graduated to a new bathing method (brought on by her new, smaller isolete)... she now bathes in a tubberware type container with a screen in it... it allows her to lay in her bath w/out getting her head wet!

Unfortunately, Emma has not had much luck with her respirator lately. She was having no luck with the respirator changes... and then she developed what appears to be another bout w/ pnemonia... so, a small set back, but she is looking good today!

Emma has done something else fun... she outgrew the dress above! Amazing, I tell you. And now, some pictures w/ animals!

Our friends Mark, Sarah, and Gavin gave Emma this bunny. Not only does Emma love it, all of the nurses in the unit love it. It works perfect for premies like Emma.

Another accomplishement of Emma was that the isolet temperature was decreased over 2 degrees over the last couple days (she is now down to 31 C). She now only needs to get to 27 C and she might be into a crib!

Finally... Mom and Emma k-caring!