Eye Exam

All premature babies are at increased risk of vision problems and a disease called retinopathy of prematurity ("ROP").  All premature babies born under a certain birth weight receive an eye exam in the hospital at 36 weeks. Ella and Sadie's eye exams were yesterday.  The doctor asked whether I planned to stay and when I said yes, he asked whether I planned to watch.  The latter of the two questions prompted me to follow up with, "What the hell are planning to do to my daughters?!"  I may have caught him a little off guard... he eventually picked up on my sarcasm and went on to explain that the examination may look a little barbaric but assured me that the girls eyes would be numb and that this was the only way to accomplish the exam.  He would use a metal contraption with little prongs that would hold their eyelids open and would then take a small blunt tool to stick in the back of their eyes to move the eyeball around so that he could see what he needed... of course with the aid of a very bright light which he would shine directly into their eyes.  Sounds awesome.

Curiosity got the best of me and so I decided to watch anyway - it definitely doesn't look comfortable, but it wasn't as bad as I thought it might be.  Since I was watching, he took the time to explain to me what he was doing and what he was looking for.  He probably only paused for mere seconds to look up and tell me what was going on - but it sure felt like forever as he held his blunt tool in the back of Ella's eyeball and provided me with an explanation. After that I acted much less interested so as not to tempt him to prolong the exam just to tell me what was going on (especially since I have absolutely no recollection of what he said...).

In hindsight, I kind of wish I would have recorded it. However, I have once again failed you, so instead of seeing my girls' eye exams... I invite you to watch this delightful little video from YouTube of some other poor baby's eye exam.

http://www.youtube.com/watch?v=p5a1DP30IyM

The girls were pretty wiped out after the exam... either that or they were high.  I choose to believe they were just sleepy.

One Month

One month ago (last Saturday) Ella and Sadie made their grand debut.   They have definitely won our hearts and as stressful as it is to spend a majority of my time in the NICU, walking into the girls' room every morning is my favorite moment of every day.

Sadie Marie

Ella Claire

Oxygen. We have had a pretty busy week - so I apologize fora  delay in this new post!  Last we spoke, Ella and Sadie were both on oxygen.  As of Monday for Ella and this morning for Sadie, both girls are off oxygen! So far, both are doing very well.  We continue to work on bottle feeding and nursing - but are careful to take it slow so as not to overwhelm them with changes (which may cause them to go backwards with their breathing progress.  So that is very exciting!

Blood Sugar.  I've written a few times about Sadie's struggles with maintaining her blood sugar - well despite a few set backs, she is finally making great progress!  Sadie has maintained over the last couple of days as the doctors continue to try to discontinue her PICC line.  I think that they may attempt to discontinue the medicine and just run saline tomorrow.  [For any medical personnel that may be reading this... I am trying my best to recount exactly what I am being told, but please forgive me if my explanations don't make sense.  There is a reason I didn't go to medical school.  For the rest of you, you may continue to blindly trust my explanations.]

There was an extended period of time where I was convinced that Sadie had Addison's disease, would need part of her pancreas removed, or had a growth hormone deficiency.  These diagnoses were based on my extensive online research.  It is possible that the neonatologist laughed at me when I mentioned Addison's disease... because it is rare. Very rare. I suppose I should trust the doctors over the great minds bringing us Wikipedia.

Head Circumference.  To this point, I have not written anything about Sadie's head circumference measurements.  Probably because, once again, I took to the internet and was convinced of the worst possible situation... Now that I know things are probably fine, I am ready to explain.  Generally, the girls had been receiving weekly measurements - including measuring their head circumferences.  Sadie's measurements remained steady until a few weeks ago when the measurements showed that her head circumference increased by 2.5 centimeters in one week.  This is a lot of sudden growth (.5 - 1.0 centimeters/week would be normal for their age).  Well after allowing Google to convince me she had hydrocephalus and would need a shunt and a life full of shunt-related issues, her head ultrasound revealed that, alas, there was no hydrocephalus.

I understand that I should retire "Google", but it seems to be an addiction I just can't let go of!

Baby Got Back

The other day while changing the girls' diapers, I noticed some changes.  There was something different about my cute little premature daughters: butts.  I knew they had been gaining weight... but this was the first time I really noticed where that weight was going - apparently, directly to their asses.  I suppose this is good and cute now, someday they will be so sad that this is the first place of distribution for their bodies.  Ella and Sadie were born without butts; literally not even enough fat for a crack.   All of the sudden, my babies got back (if you were just tempted to correct my grammar... you somehow missed a major landmark of the early 90s...).

So why am I telling you about their butts??  First, why wouldn't I?  Second, this is my witty and charming way of telling you that I've heard your requests: you want weights (I know, I sometimes take the scenic route - but I always get there eventually!).  So I am going to keep this post dedicated to updating you on the girls' weight.  Of course, their weights will also be mentioned on other update posts... but at least here you will be able to see it all at once.  I will only be keeping the last 7 days so that the post doesn't get too long.  * For my communist readers: grams are in parentheses. 'Merica!!

Ella:
July 12, 2013: 4 lb 15.7 oz (2261g)

July 13, 2013: 5 lb 2.4 oz (2336g)

July 14, 2013: 5 lb 4.4 oz (2395g)
July 15, 2013: 5 lb 4.8 oz (2405g)
July 16, 2013: 5 lb 6.2 oz (2445g)
July 17, 2013: 5 lb 7.5 oz (2482g)

July 18, 2013: 5 lb 9.5 oz (2536g)

July 19, 2013: 5 lb 10.5 oz (2567g)

July 20, 2013: 5 lb 12.5 oz (2624g)

Sadie: 

July 12, 2013: 4 lb 1.3 oz (1852g)

July 13, 2013: 3 lb 15.4 oz (1798g)

July 14, 2013: 4 lb 4.7 oz (1949g)

July 15, 2013: 4 lb 5.3 oz (1967g)

July 16, 2013: 4 lb 5.8 oz (1980g)

July 17, 2013: 4 lb 7.0 oz (2014g)

July 18, 2013: 4 lb 7.1 oz (2016g)

July 19, 2013: 4 lb 8.4 oz (2055g)

July 20, 2013: 4 lb 9.9 oz (2096g)

When Ella Met Sadie

In my last post, I said that I would share what kind of awesome "three week birthday celebration" we had with the girls...

Since 3:09 on June 13 when Ella was born, the girls have not been together at all.  While they have been in the same room, they have been always been in separate beds - in fact, we use hand sanitizer each time we move from one of the girls to the other just to make sure that if one is sick, we don't spread the germs.

Blah, blah. Ryan says all you people really want are pictures of the girls.  So... here are pictures of the first time Ella and Sadie met... Enjoy!! :)

They love one another. 

 

 

The nurse wasn't really sure what to think; she had never seen someone attempt to hold twins quite like this...

Sadie is super excited about meeting Ella... Ella is really tired.

Ella is already jealous about having to share her mom with someone... this look is saying, 

"Seriously, Mom?!  What the F?!"

Ella's morning breath all up in Sadie's business.

I could have sat there all day holding the two of them... that is a lie.  While this looks peaceful, at one point both girls started crying and their oxygen levels started to dip down so both alarms started sounding.  I was stuck.  I couldn't stand up and put one down (becuase both are hooked up to either oxygen, IVs, and the monitors).  All I kept thinking was... "this is what it is like to have two kids". I had a minor panic attack... 

So sweet. 

I know this is a terrible picture of me.  But I loved this moment - so I am including the picture.

Happy 2,013th Birthday, America!

While America was celebrating her 237th birthday (or as Twitter reports - her 2,013th birthday), a much more important birthday was being celebrated in NICU room 4034: Ella and Sadie's three week birthday!!  Don't feel bad if you didn't get an invitation - it was a pretty exclusive event.  We had a pretty awesome celebration - but that will come in the next post!!  

Ella Update: 

Without giving a play by play, the only major change with Ella is that she is back on oxygen after being on room air (breathing with no assistance) for about 4 days. Doctors do not seem overly concerned because while she is still trying to figure out this crazy breathing business, she is also in an open crib learning how to maintain her body temperature AND learning how to nurse which requires mastering the art of simultaneously sucking, swallowing, and breathing. 

Other than the games she is playing with the oxygen (and my heart), Ella is doing very well.  She is now weighing in at 4 pounds and 8 ounces and the challenges that she is having are very typical for a baby born at her gestational age. Typical for a baby born at her gestational age.  Typical for a baby born at her gestational age.  This is my mantra - I have to keep reminding myself of this each time she decides to go back on oxygen, stop breathing, etc. 

Sadie Update: 

Sadie has been our little rock star since birth.  She is still a rock star and doing well, but she is now the one who is presenting a few more challenges.  Her blood sugar has not corrected itself as we were hoping it would.  As a result, she is being tested for a number of potential causes.  Labs were drawn on Friday.  They are testing the following levels: coritsol, carnitine, growth hormone, and insulin.  The cortisol and carnitine results came back right away and were not immediately concerning to the endocrinologist; they remind us that she won't really say anything until she has all of the labs back to complete the full "picture".  However, the growth hormone and insulin results will not likely come back until the end of this week - at the earliest.  There is still a chance (or so they say to the mother with blood shot, baggy eyes) that it will correct on its own... so pray for that because none of the other options are good ones.  

In addition to the concerning blood sugar levels, Sadie has seemed very easily agitated with her heart rate jumping to 200+ pretty frequently and quickly.  While that is high even for a baby, keep in mind that a baby's heart rate is going to be almost double an adult's at rest - the "normal" range for a baby is 120-160.  At the same time, she does this grunting stuff and her face turns purple.  I, of course, was convinced she was in great pain.. but when I described this to the doctor, he just smiled and asked me if it was possible that she was trying to make a bowel movement.  Grunting, increased heart rate, purple face - poor Sadie.  Although she has been going to the bathroom on her own - she has also started eating her milk with a high calorie supplement which may require her system to readjust and she may just have to work a little bit harder. 

Finally, Sadie had to go on oxygen on Friday.  Of course, this was very difficult for me and because she had not been on oxygen since the day after she was born, but it was also concerning for the nurses.  According to the books I have on preemies, infection or illness is usually the cause of sudden respiratory issues.  For this reason, they ran a few blood panels - fortunately, all came back normal.  Yesterday (Saturday) the doctor said that it was possible that she has excess fluid as a result of the IV fluid she continues to receive to correct her blood sugar.  We are working on this issue now and are hoping that once we get rid of the excess fluid she will be able to go off the oxygen (insert prayer here). 

More important than these issues, Sadie is in an open crib, is an alert baby girl whose smile is a miracle in and of itself coming from a peanut who at one point weighed a mere 2 pounds and 1 ounce.  Speaking of weight... Sadie is now weighing in at 3 pounds and 10 ounces... What a chunk! 

Two (er.. almost Three) Weeks!

So I continue to work on completing this post... but every time I sit down to finish, we have updated information. But here we go again!

These future Supreme Court Justices/professional tennis players/neonatologists/attorneys/track stars made their debut a whole two weeks (and 5 days) ago now... I originally started this post last Thursday... oops!  Although progress seems to be extremely slow... they have made such big strides since then or even since the "One Week" post!  

Ella is now weighing in at 4 pounds, 2 ounces.  She is now big enough to wear preemie clothes and the idea of finally being able to put some cute clothing on one of my babies is pretty exciting for me (I am planning a "Fashion" post in the coming days/weeks).   Another benefit to her growing size: we moved her from the isolette incubator and into an open "crib" today!!!  Lights.  She is no longer under photo therapy lights as of last Wednesday!  Oxygen.  Unfortunately, after a long weekend and a longer Monday morning (last Monday), Ella went back on oxygen.  Her oxygen levels continued to drop - we (and by "we", I mean this is what nurses are telling me) believe she just became too tired after 6 days of breathing on her own.  For preemies, it is very hard work to breathe on their own.  Hopefully, putting her back on oxygen will give her enough of a rest to continue developing those lungs and we will be able to remove the oxygen once again.  In fact, there is now talk about trying to take her off oxygen again!  Food.  Ella is now eating 33 mL every 3 hours and has started nursing.  For babies Ella's size nursing requires the same amount of energy required to run a mile so we take it slowly and continue to feed her through her NG tube. They also fortify her food to add calories - they are too little to eat enough food to receive the number of calories they need.  IV/PICC.  Both girls started with an IV and eventually received a PICC line to receive the necessary nutrients and fluids before they could start digesting milk.  Ella had hers removed last week!  This means that she has been tolerating her food well and is getting the nutrients she needs from milk alone - this is a big deal.  Unfortunately, our nurse the evening we removed the PICC line was my good friend Sara... who had to remove very good tape from my premature daughters very sensitive skin.  It was the first time I had heard Ella really cry...which of course made me almost cry.  Although Ella's pain was in no way Sara's fault or as a result of her method... I would be lying if I said there wasn't a small part of me that wanted to punch her (Sara: just a very small part of me - and I suspect that you know me well enough to know that is how I was feeling that night). 

Sadie is now weighing in at 3 pounds, 5 ounces!!! How exciting to cross the 3 pound barrier!  While she is not big enough to wear preemie clothes quite yet, she continues to rock the swaddle.  She looks real good doing it.  We have clothing just waiting for her though... Lights.  Sadie is also rid of the lights for now.  Like her big sister, her numbers also continue to creep up.  As of right now, we are holding out to see if they will balance out on their own.  Keep your fingers crossed that she won't have to go back under!!  Food.  Sadie is now eating 28 mL every 3 hours.  Her food is also being fortified - but with an even higher calorie supplement.  Blood Sugar.  Before every feeding, the girls' blood sugar is tested.  This has not been an issue for either of them until very recently.  Sadie's blood sugar has always been lower than Ella's - but still within normal ranges.  Recently, however, her blood sugar has been dropping much lower.   Unfortunately I Googled "low blood sugar in premature babies".  Bad idea.  Hopefully I'll have good news about how the issue has self-corrected over the next week!  Sadie still has her PICC line and will likely keep it until we can figure out what is going on with her blood sugar. 

A funny, less-informative post to come soon...