Friday, April 29, 2011

Closer to the "H" Word

Well, today one of the doctors used the "H" word when talking to Natalie about Kylee.  The doctor told Natalie to get the house ready for a baby.  I did not get to go see Kylee today unfortunately; however, Natalie told me that everyone says she is doing really well at this time.  She is continuing to gain weight and is now up to 4 pounds 10.5 ounces.  This is almost a full pound of gain since she was born.  Thursday also marked three weeks since her birth.

From what Natalie has told me, they may be starting to figure Kylee out somewhat when it comes to her feeding issues.  Kylee was getting a shot of Starbucks (caffine) every morning to help stimulate her to aid in breathing and they are working to wean her off of her daily coffee break to see what she'll do on her own.  We were also told that the earliest she may be able to come home is the end of next week.  These next few days will be crucial to see when we get to bring Kylee home!

Tuesday, April 26, 2011

Slowly but Surely

Today was a rather uneventful day up until just a few minutes ago.  Natalie and I made another trip to the hospital to visit Kylee and feed her.  Kylee has been spitting up rather frequently and this has the medical team observing her for now.  They are under the impression that this is just because she is premature and hasn't mastered the art of sucking, swallowing, and breathing all at once yet.  One of Kylee's nurses last night told Natalie that Kylee appeared to be gassy and in her experience this gas has led to the problems Kylee is experiencing.

The nurse suggested that we inquire about giving Kylee a dose of Mylicon to see if that helps her at all.  Kylee did spit up after Natalie and I fed her; however, it was before she received her dose of the medicine.  When we talked to Kylee's nurse a few minutes ago, we were told that Kylee drank 31 cc of milk from a bottle and spit up maybe 1 or 2 cc afterwards.  This is the most milk Kylee has ever taken in one feeding by mouth and successfully kept down.  Hopefully, the nurse from last night was right and we may be getting things figured out.

The only other noteworthy news item is Kylee's weight.  She is up to a whopping 4 pounds and 7.5 ounces (2.02 kilograms)!!

Monday, April 25, 2011

Breast Feeding

This weekend has been crazy with Kylee and has left little time for any kind of update.  This weekend marked many firsts for Kylee and she is steadily improving as we move along.

As of this posting, Kylee last weighed 4 pounds and 5 ounces....slowly packing on the ounces.  Kylee was officially moved into the Level II NICU this afternoon and the atmosphere in this area is extremely different from Level III.  It was also exciting because one of the babies only a few spaces away from Kylee was being sent home while we were there.  That was kind of the light at the end of the tunnel.

Easter Sunday brought Kylee's first attempt at breast feeding.  We weren't really sure of what to expect and the nurses did not really have high expectations for this first attempt.  They were more concerned with Natalie and Kylee getting into position and just relaxing there for some time.  Well, it didn't take long once everyone was in position, but Kylee figured out what to do and started trying to eat.  She has mastered the sucking part of it, but still hasn't quite mastered how to swallow.  After 30 or so minutes, they had to feed Kylee through her tube and she didn't want to quit trying to eat with mama.  The nurses were excited and encouraged as Kylee performed better than expected on her first go around.

Kylee is currently being fed using a pump that will deliver the milk at an extremely slow rate to aid her in digestion.  I held Kylee today while she was being fed and it took 45 minutes to give her the milk.  I don't recall the exact amount, but it wasn't a whole lot.

One of the doctors we spoke with today who will be treating Kylee said that they want her to not have any bradycardic or apneic episodes for about a week before they send her home.  Another vital thing is her eating.  When Kylee was breast feeding today, it appeared as if she would have rather been asleep than eating.  She would wake up, suck for a little bit, and then appear to become disinterested before starting the cycle again.

All in all, Kylee is doing well and continues to improve.  The doctor we talked with today told us to aim somewhere around her original due date (May 28) for her to come home; however, she seemed optimistic that it would be sooner than that and told us the only person who truly decides when Kylee is ready to come home is Kylee herself.

Kylee's first Easter dress

Friday, April 22, 2011

Level II

We were told today that Kylee is ready to "graduate" from Level III to Level II in NICU.  Due to construction in the actual Level II area, Kylee will remain in Level III until they have a place for her or she is sent home.  Kylee's main hurdle now to come home is being able to feed completely from a bottle with no trouble.  They have put a fortifier in Kylee's milk and she just needs to gain weight and strength before she can come home.

Basically, we are in a waiting game to see how long Kylee will take before she can reliably take a bottle!!

Thursday, April 21, 2011

Two Weeks and Counting

Today marks two weeks of life for Kylee and many positive things have happened in those two weeks.  Today, we found out that Kylee will be taken out of her incubator and put in an open air crib.  They will then monitor her to see how her body temperature responds to this non-temperature regulated environment.  If all goes well, she will stay in her crib for the duration of her stay in the hospital.  Also, we learned she is more or less ready to be moved to NICU II; however, they are doing some type of construction work in there and we should not be surprised if she doesn't get moved right away.

Last night was bath night for everyone in NICU and Kylee's nurse told us that she absolutely loved her bath time.  Apparently, right after bath time, Kylee fell right asleep!

Kylee is going to have her feeds alternated between a bottle and her tube as she hasn't quite mastered the whole swallowing thing just yet.  The doctors have also ordered a fortifier be added to the milk to increase the number of calories Kylee receives each time.  These additional calories will aid her in gaining weight and getting stronger.

Natalie will be visiting Kylee this evening and spend more time holding her.  Hopefully, Kylee will be in her big girl crib and we will be able to post pictures of this tomorrow.

Wednesday, April 20, 2011

Bottle Feeding Kylee

Today was a good day for us all around.  We went to visit Kylee this afternoon and needed to grab a bite to eat beforehand.  As we walked through the hospital to their "food court," I saw Dr. Jen Arnold getting off of an elevator and heading our direction.  Natalie and I have watched her reality TV show on occasion, The Little Couple, on TLC and know that she works with premature babies such as Kylee.  Natalie took the opportunity to say "hi" to Dr. Arnold and she was extremely friendly and personable, especially when she found out we had a child in NICU.  Needless to say...this was a Kodak moment......

After lunch it was time to go see Kylee.  When we arrived, we noted that Kylee wasn't wearing her original outfit from last night.  They told us that Kylee got a little to warm in it last night and it had to be removed.  Natalie of course apologized for this and the medical staff told us this was actually a good thing as Kylee is starting to gain better control of her body temperature.  Once Kylee can maintain her body temperature without assistance, she will graduate from the incubator to a crib.

Kylee's nurse told us that she is feeding like a champ and they are giving her milk from a bottle whenever she will take it.  They say that sometimes she is too tired and doesn't really have any interest in drinking from a bottle, so they just feed her through the tube.

While we were at the hospital, Natalie got the opportunity to feed Kylee with a bottle.  Natalie loved every minute of it and Kylee drank most of it before deciding she didn't want any more.  All of this successful eating has Kylee a whopping 4 pounds and 1 ounce now!

All is improving with Kylee and two doctors told us that she could be home within two weeks!!  Right now, Kylee is in the Level III NICU (the highest level) and they want to monitor her for a couple more days before transferring her to the Level II.

Natalie also took this opportunity to dress Kylee up in another little outfit for all to see........

More pictures on the picture website.

Tuesday, April 19, 2011

Kylee's First Outfit

Well, Natalie and I just got home from the hospital not too long ago and we spent a couple of hours with Kylee. The first thing Natalie did when we arrived at the hospital was to dress Kylee up in an outfit and put a bow in her hair....well....not really in her hair.....she just pretty much set it on her head.

Kylee wasn't too interested in feeding from a bottle when her 6:00 PM time rolled around so they just fed her through her nasal tube.  Right before Natalie held Kylee, we discovered a red and swollen area on her left bicep.  It was examined by the medical staff and they decided to remove her PICC (Peripherally Inserted Central Catheter) line.  A PICC line is similar to an IV; however, it is intended for long term use.  With this removed, the only "tubing" Kylee still has is her feeding tube.

We heard that Kylee will be receiving more milk starting tomorrow, but we aren't sure how much of an increase she will get.  Natalie held Kylee for an hour or so and it is getting harder and harder to pry them apart every night....

Eating Like a Champ

Natalie and I just got a phone call from Kylee's bedside nurse.  We knew that they were planning to up the quantity of milk they gave to her; however, they decided to experiment and go one step further today.  The nurse told us that they attempted to feed Kylee using a bottle and she took to it like a champ!!!

Being able to feed successfully from a bottle is one of the things that Kylee must successfully do before she is allowed to come home.  Hopefully, we will be able to check that off of the list for sure!!

Natalie and I are going to the hospital later this evening to see her....more updates to follow....

Monday, April 18, 2011

Leaps and Bounds

Today was an extremely good day for Kylee.  Her CPAP was removed completely which means she is breathing well on her own and no longer needs any assistance.  In addition to being able to breathe on her own, Kylee has been doing really well with feedings.  They have upped her feedings to 17 cc every three hours and when we left the hospital at about 9:15 or so this evening, they only withdrew about 2 cc from her stomach before feeding her again.  The doctors and nurses (and her parents) are extremely satisfied with her progress and said that she is working her way home!

Due to her previous feeding issues, they had Kylee on two different intravenous nutritional supplements so that she would not lack nutrients if she did not tolerate mama's milk for some reason.  One of the two supplements was stopped this morning and the other will be stopped tomorrow morning.  When they stop giving her these supplements, they will be able to remove her IV line and she won't have so many tubes and stuff hooked up all the time.

As of right now, there is a feeding tube that runs into her mouth and down into her stomach.  This is because the CPAP went into Kylee's nose and did not leave any other choice.  Kylee's nurse told us tonight that she would be removing the tube from her mouth and replacing it with one through the nose...and she said that would be more comfortable for Kylee.

Kylee's nurse also said that they will try to start bottle feeding her in the not too distant future.  Depending on how well she is able to feed from a bottle will decide how long Kylee will need the feeding tube in her nose.

For now, Kylee is still in an incubator because she doesn't quite have control of her body temperature.  Her incubator is set to 30°C (86°F) to keep her body temperature where they want it.  The nurse said they will slowly decrease the temperature until it reaches the temperature of the room air which is 28°C (82°F).  Once Kylee is able to maintain her body temperature where they want it, she will be moved out of the incubator and into a crib!!

When we went to the hospital tonight, I held Kylee for about two or so hours.  Natalie has gone every night this week and held Kylee for about the same amount of time each day.  One of Kylee's doctors told Natalie that she wanted her to be at the hospital everyday to hold her as the skin-to-skin contact would be beneficial. I must admit....I think it has helped....hahahaha.

Our little Kylee is improving with every passing day.  She is up to 3 pounds 15 ounces and has grown ¼" and is now 17 inches tall.  We have now gotten to see what Kylee's face looks like without any tape on it with the removal of the CPAP.  Everyone agrees that she is beautiful........

Sunday, April 17, 2011

Meeting the Family

Saturday brought many new faces into the NICU to meet Kylee.  Several of Natalie's family members arrived in town for the baby shower and all got to meet Kylee yesterday afternoon.  I, unfortunately, did not get to make the trip as I have some kind of sinus infection/laryngitis thing going on and did not want to risk spreading anything to Kylee or any of the other babies in NICU.

Natalie reported that Kylee was extremely active and alert during their visit.  Natalie has also been closely monitoring how well Kylee has tolerated feedings and they have slightly increased the amount of milk given to Kylee and she tolerates it well!!  Additionally, they are decreasing the pressure to her CPAP machine as well.  Decreasing the pressure will force Kylee to breathe more on her own...which is good!!

Apparently Saturday nights are one of two scheduled "bath nights" for all babies in NICU and Kylee's nurse reported that Kylee enjoyed her bath time.

Natalie was able to get a few pictures of Kylee without her little hat or CPAP in place.  The things on her face are pieces of velcro tape that is used to hold the CPAP nasal prongs in place.

Apparently, everyone thinks she looks like her daddy....I'm not so sure I see the resemblance....hahahahahahahahhahaha......

Oh, a final positive note.  Kylee has started to gain weight and is actually above her original birth weight by an entire ounce!!  Hopefully she continues this positive trend so she can come home soon........

Saturday, April 16, 2011

A Mama's Touch

Natalie went to the hospital this evening and spent some quality time with Kylee.  Kylee successfully kept her 6:00 PM feeding down and that is a good thing!  Natalie held Kylee for two hours and the doctors told her that this skin-to-skin contact will do wonders for Kylee's development.

Additionally, Natalie learned that some of the information we received from a nurse this afternoon may not have been entirely accurate.  The nurse who called us does not normally tend to Kylee everyday and wasn't exactly up to par with her condition.

We just found out that Kylee tolerated her 9:00 PM feeding well and is sleeping like a baby....hahahha....okay....too easy.....

Friday, April 15, 2011

The Unknown

Well, today Kylee has her medical team scratching their heads.  They are becoming slightly concerned because she is not tolerating being fed.  We spoke to the doctor a while ago and she expressed some minor concerns for Kylee's condition.  Apparently, she has thrown up the past several times they have fed her and there has been a greenish color to her vomit....which indicates bile.

This is really throwing the doctors for a loop because Kylee is very active, has good color, and being referred to as "feisty" by everyone.  The team is planning to watch her for the night and see what happens with feeding her in the future.  They are wanting to be cautious and observe her before performing more invasive tests to ensure those types of evaluations are necessary.

Hopefully the issues Kylee is experiencing are just due to her prematurity and that is not something the doctors have ruled out yet.  They are just wanting to be cautious as they aren't sure what exactly is going on with her digestive track.

More news as I get it.......

Thursday, April 14, 2011

Back to Katy

Before everyone gets too excited, the only people who came back to Katy were Natalie and I.  When Natalie was discharged from the hospital on Saturday, we "moved" into the Ronald McDonald House temporarily.  This facility provides a "home away from home" for the parents of children who are in one of the medical center's hospitals.  Lucky for us, our temporary home was only a 5 minute drive from Texas Children's Hospital and parking was free!!!  The house rules would have allowed us to stay for up to 45 consecutive nights and that was something we had originally planned on trying to do.  After thinking about it for a while, Natalie and I decided that it would be better for us to come home and just make the commute to see Kylee every other day or so.

We went to see Kylee this morning before Natalie had a doctor's appointment to discuss her blood pressure issues.  Kylee was not under any photo therapy lights and she looked so peaceful as she slept.  The nurse said that they will test her bilirubin levels again in the morning and determine if they need to "light her up" again.  The nurses said that Kylee is maintaining pretty well and all of the problems she is experiencing are because of her prematurity and should resolve themselves as Kylee gets older.

Natalie is so excited and she'll tell you she has 30 reasons to be excited.  When Natalie went to the hospital last Monday, she had gained a total of 43 pounds during her pregnancy.  Today when we went to the doctor, Natalie jumped for joy when she learned she has already lost 30 of those pounds.  The doctors told her that much of her weight at the end was due to retained fluid from the preeclampsia and would be lost after delivery.

Overall, mama is feeling better and Kylee is doing as well as can be expected!!!

Wednesday, April 13, 2011

Day 6 Update

Natalie and I just got back from visiting Kylee and we both spent some time holding her this evening.  Kylee's photo therapy has been reduced from three lights down to one.  They are considering taking her off of the lights completely tomorrow to see how her bilirubin levels react and then going from there.  As far as the magnesium sulfate levels go, they have stopped running tests for that because her levels are within an acceptable range.

Natalie asked what criteria Kylee has to meet before she will be able to come home and the nurses listed a few.  Kylee needs to be able to maintain her body temperature in a normal crib without assistance, feed successfully from a bottle without any problems, maintain high oxygen saturation levels while breathing on her own, and stop her bradycardic episodes.  They said that there aren't any minimum weight requirements or age; however, they always tell parents to shoot for their baby's due date....which in our case is May 28th.

Natalie and I both held Kylee for about 15-20 minutes each.  She opened her eyes for us a little and they appear to be a dark blue color.  She doesn't hold them open for very long and her eyes aren't too big to begin with...hahaha...but Natalie swears they are dark blue.

Kylee is also being fed mama's milk successfully and they are encouraged by her successful feedings!!!

Tuesday, April 12, 2011

Natalie Holding Kylee for the First Time

We went to see Kylee this evening and Natalie was able to hold her for the first time.  While Natalie held Kylee, they fed her 5 cc of mama's milk and she was able to keep it down without any problem.  Kylee is being fed right now through a tube that goes into her stomach through her mouth.  They say that Kylee would be able to suck from a bottle just fine; however, she hasn't developed the skills to swallow yet....still too early.  Natalie was super excited to hold Kylee and she turned into a brand new woman.  Natalie held Kylee for about 30 or so minutes and we had to pry them apart at the end.

Right before we put Kylee back in her little space capsule, we were able to take the CPAP off for a brief moment to get a better picture of her face.  Unfortunately, we couldn't take all of the tape and stuff off of her face, but we got a much better idea of how she looks!

Day 5

Natalie just got off of the phone with Kylee's bedside nurse in the NICU and got more promising news.  The pressure level to Kylee's CPAP has been reduced and she is responding well to that change.  Kylee's bilirubin level has increased slightly back up 10; however, this jump is extremely minor and was somewhat expected.

Kylee will also be receiving about 5 cc of mama's milk sometime later today and that has Natalie jumping up and down.  Texas Children's Hospital has a milk bank near the NICU where mothers of infants in the hospital can store breast milk.  Whenever the doctors allow feeding, technicians at the milk bank will prepare the milk in the specified amounts and deliver it to the NICU for feeding.

On another positive note, the nurses told Natalie that she could hold Kylee today for about 20-30 minutes.  This time restriction is due to the photo therapy and the fact that Kylee needs to be under the lights to help her jaundice.  Stay tuned this evening for pictures of Natalie holding Kylee for the first time!!!!

Monday, April 11, 2011

Kylee - Day 4

This morning brought some good news our way from NICU.  We were told that Kylee had a "quiet" night and pretty much kept to herself.  A bilirubin test this morning revealed that these levels had dropped to 8.6 and that is definitely a good thing!

A few days ago, Saturday I think, they had to stop feeding Kylee because she wasn't keeping it down successfully.  The doctors wanted to give her a few days to get stronger and then take some x-rays to evaluate her digestive track and try to start feeding her again.

When we went to see Kylee this morning, the doctors were actually just pulling up to her bed on their rounds.  We listened as they discussed her condition and their plan of treatment.  The doctor said the x-ray of her abdomen revealed she has lots of air that is trapped and this is likely the cause of her problems with feeding.  The medical staff said that Kylee is experiencing many things and progressing in ways that are consistent with her gestational age in conjunction with the time since she was born.  The doctor said Kylee still has a way to go; however, they seem highly optimistic on her progress.

I don't know if I mentioned earlier that Kylee was under three separate photo therapy lights to help the jaundice, but she was...hahaha.  Due to the dropping bilirubin levels, the decision was made to remove one of the lights.  Additionally, they are going to start slowly weaning Kylee off of the CPAP machine by decreasing the pressure.  Decreasing the pressure will help in two ways.  The main goal is to have Kylee breathing on her own without any assistance and a secondary benefit is that her guts won't be full of air like they are now.  Less air in the gut will make feeding easier and present less of a chance that Kylee will vomit what they feed her.

The doctor said they will monitor how Kylee responds to all of these changes that are taking place and that she may possibly be fed some of mama's milk tomorrow!!!

Speaking of mama, Natalie is feeling much better today.  She was discharged from the hospital on Saturday afternoon and wasn't feeling too hot...which is expected.  When she woke up today, she told me she can definitely tell a difference in how she feels.  We are definitely encouraged by the news from NICU and thank everyone for their continued support.

Sunday, April 10, 2011

Photo Album

This is a link to a Picasa photo album for more pictures of Kylee!!!

Kylee's Photos

More Day 3

A very common condition among premature babies, and even full term babies, is jaundice.  As was pretty much expected, Kylee has developed this condition.  Luckily, since they were basically waiting for this to develop, it was caught at an early stage.  If left untreated, jaundice can be a pretty serious thing; however, it is easily treatable if detected early.

Kylee is receiving photo therapy to treat her jaundice and is being "lit up" by three different light sources.  There is once light source under her and two above her.  Natalie says that she looks like a little glow worm and I must agree.

There is a blood test that is done to measure a substance called bilirubin.  Bilirubin is normally broken down by the liver; however, in the case of infants this does not always occur.  When the bilirubin is not broken down, it causes the yellowish color...or jaundice.

Kylee's bilirubin numbers started out at 12 and went up to 14.  Some of you may be asking what unit of measure is used here and I have no clue.  We were told that there is no real cause for alarm until the bilirubin levels get near 25 and since this was detected early, this is not expected.  As of Sunday morning, we were told that Kylee's bilirubin levels have dropped to 12.5....yay!!!

Here are a few pictures of Kylee, her little sunglasses, and the setup she has in NICU.  In the first picture below, my wedding ring is on Kylee's stomach as a crude scale to show her size.....

Holding Kylee for the First Time

On Friday, I went to see Kylee along with my mother to check up on her.  We went for rounds around 9:00 AM and that was fascinating.  All of the babies in the neonatal intensive care unit (NICU) are assigned to a team of doctors, nurses, nurse practitioners, respiratory technicians, etc, and this team is responsible for their care 24 hours a day.

During the rounds, we listened to the team discuss Kylee's progress and their plan for her treatment.  Everyone on the team had a job and it was pretty neat to watch and listen as they discussed.  Also, when family is present for the rounds, they encourage us to ask questions and take the time to clearly explain what everything means and answer our questions in a clear and concise manner.

One of the questions my mother asked was when we would be able to hold Kylee.  Due to the CPAP machine, we figured it would be a few days until that was possible; however, the doctor stated I could hold her that day if I was up to it and he felt it would be good for Kylee.  I decided to hold her and was told by the staff that it would be skin to skin contact where I would remove my shirt and Kylee would lay on my chest for bonding and warmth.

It took some time and a couple of nurses to get all of the hoses and tubing situated, but they eventually put Kylee in my arms.  I then held her close for about 45 minutes.  Let me tell you, 3 pounds and 13 ounces doesn't sound like much weight, but my arm was tired at the end of it due to the weird position I had to hold while holding her!

Kylee - Day 3

Today is Kylee's third day of life and she is continuing to improve under the watchful eyes of her team at Texas Children's Hospital.  The major hurdle she needed to overcome immediately after birth was her breathing.  Kylee was placed on a continuous positive airway pressure (CPAP) machine immediately after delivery to assist her breathing.

Kylee was born at a gestational age of 32 weeks and babies born at this time generally suffer from respiratory difficulty as this bodily system is one of the last to form.  Kylee's breathing has been improving day by day and this improvement is actually quantifiable.  Oxygen is pumped into the CPAP machine and mixed with regular air.  A sensor measures the oxygen saturation levels in Kylee's blood and measures them in percentages.  A normal person's oxygen saturation levels are very high (<95%) when breathing room air.  The air we breathe contains 21% oxygen.

I have told you all of this in order to explain how Kylee's respiratory progress is being measured and how simple it is to understand.  When Kylee was first admitted into the hospital, the "air" she was breathing contained 35-40% oxygen and her saturation levels were in the upper 80's with periods in the lower 90's.  During the course of the past few days, her oxygen requirement has decreased to 21% (room air) and her saturation levels are maintaining steady in the lower to mid 90's.

The doctors feel that Kylee's respiratory problems are caused by some of the medication that Natalie was on in the hospital.  Natalie was given magnesium sulfate to keep her blood pressure from getting too high.  The magnesium sulfate is pretty powerful stuff and caused Natalie to be pretty loopy, drowsy, lethargic, etc.  She was actually pretty entertaining at times with the things she would say and we did have the same conversations two.....or three times.....hahaha.  Obviously, with the magnesium sulfate being pumped directly into Natalie's blood stream, Kylee would experience the effects of it too.  Kylee was affectionately referred to as a "mag baby" due to the medication and this was blamed for the respiratory difficulty.  The doctors stated that it would take several days for the medication to be eliminated from her system and that we should see improvement during that time.  We have definitely seen improvement and are taking things one day at a time.