35 Weeks

35 weeks today and Veronica continues to amaze us.  Andrew and I visited her this evening and her CPAP was taken off so she could be weighed.  She seemed to do fine without the CPAP while she was on the scale and then as she was dressed.  And then I got to hold her - she was awake, alert and without CPAP!!  She lasted about 15 minutes.  It was fabulous!!

In other news, Veronica is tolerating her new crib very well and her temperature has been stable.  The isolette remains close by just in case she needs to return to warm up a bit.  She gained another ounce overnight so she is up to 4 lbs, 1 oz (yippie!).  We are confident that within the next week she will try a bottle.  They have delayed it a bit to see if she could be weaned off of the CPAP.  And the change to the open crib was a big one so they don't want to make any other significant changes for at least a few more days.

Here are some photos from this evening:

 

4 lbs!

Just got word from Veronica's nurse that she weighed in tonight at 1815 grams which is the equivalent of 4 lbs! Hooray for Veronica!!  5 lbs is next.  Go, Veronica, go!!

Go, Veronica, Go!

Today was a big day for Veronica as she graduated to an open crib. This was wonderful for us to see especially since her progress of weaning off CPAP to room air has been slower than we had hoped. They have now stopped trialing her off of CPAP because she continues to have regular desats. Once she is more stable, they will try again, which hopefully will be soon.  This was disappointing to hear but we were assured that this is a normal part of preemiehood. One of the doctors also mentioned BPD (bronchopulmonary dysplasia) which is often diagnosed in extremely premature infants and leads to chronic lung disease. Apparently one of the criteria is continuing to need supplemental oxygen after 32 weeks gestational age. Veronica is 35 weeks tomorrow and for the most part is breathing room air but still occasionally has her moments when she requires additional oxygen. So it seems she has a mild case of BPD which of course could be a lot worse but obviously not something we are happy about.  But we are thrilled that she is out of the isolette and continuing to grow.  Go, Veronica, go!!

Here are some of the last photos of Veronica in the isolette (notice my shirt - thanks Lori!):

And here she is in her new crib:

Getting Closer

Veronica is getting very close to 4 lbs. This evening she weighed in at 1703 grams which is the equivalent of 3 lbs 12 oz. What's even more exciting is that when she reaches 1800 grams, or possibly even sooner, she will get to move out of the isolette into an open crib. This can't happen soon enough as far as I'm concerned. I'm tired of the isolette and I'm tired of CPAP. And it doesn't look like the CPAP is going anywhere soon which is a little frustrating. I'm trying to be patient.....but it's getting tough. At least the good thing is that the CPAP is not hurting her and it's actually making her lungs stronger. But I just want her to get to the point that she no longer needs it. They are trialing her off the CPAP once a day now. Today she lasted 5 minutes. Maybe tomorrow we'll shoot for 10.

3 Minutes

Today the doctors decided that it was time to start trialing Veronica off of bubble CPAP.  This was somewhat of a surprise since she has still been having events and she isn't down to the lowest CPAP setting yet (PEEP 5).  But at the GW NICU, the doctors like to push the babies to make progress, something for which we are grateful.  I think if Veronica had been at another NICU, she would have remained on the ventilator longer than she did.  So they tried her off CPAP and she lasted a whole 3 minutes before desatting and needing to be put back on.  We're not sure when they will try again, probably in a few days.  But 3 minutes is 3 minutes and a whole lot better than 1 minute. 

The temperature in Veronica's isolette is now close to room temperature.  So now she is able to be swaddled which is nice to see. 

34 Weeks

Veronica’s gestational age is 34 weeks, which means she has been in the NICU for almost 10 weeks.  She is doing well but the progress at this point is slower than we, or at least I had hoped.  She is still on bubble CPAP and for the most part is breathing room air.  There are times when she has “events” or “episodes” and requires additional oxygen.  A few days ago, they lowered the pressure setting (PEEP) on the CPAP from PEEP 6 to PEEP 5.  This was in an effort to begin the weaning process to room air.  Unfortunately, they had to push it back up to PEEP 6 the next day because she had several episodes of low desats (low levels of oxygen in the blood).  This was not necessarily a setback but just part of being a preemie.  The goal is for Veronica to be at PEEP 5, breathing room air (21% oxygen) and having no desats.  She’ll get there, but it’s just a matter of when.  Once she reaches that point, they will trial her off of the CPAP for short periods of time and see how she tolerates it.  We’re told that this is often a back and forth process.  They go off CPAP, then back on, off and then on, just like Veronica did with the ventilator. 

In regards to feeding, we expect the doctors will give the go ahead for her to try a bottle in the near future.  It’s likely that she will still be on CPAP when that happens, which I imagine will make the whole process a little more challenging for Veronica, and her nurses as well.  She’ll start with one small bottle a day and then gradually work her way to the point where she is no longer fed through a tube. 

On a very positive note, at Veronica’s last weigh in, she was 1580 grams which is 3 lbs, 8 oz.  We’re getting close to 4 lbs……go, Veronica, go!!

1500 grams

Veronica is 1500 grams and apparently ready to start wearing clothes.  This begins her transition out of the isolette into an open crib which should be completed by the time she is about 1800 grams.  Her average daily weight gain is 15 - 30 grams so I'm guessing she will be at 1800 grams in two or three weeks. 

June 18 - 2 Months Old

At two months old and 1490 grams (3 lbs, 5 oz), Veronica is continuing to do well.  Her oxygen requirement has remained at or just above 21%  for the past few days.  (21% is room air.) We're hoping by this time next week she will have started the process of weaning off of CPAP.  This will be a significant step towards coming home.  And we can't wait to see more of her face and hold her without all of the CPAP prongs and tubing.  And I know she'll be happy - it's clear she doesn't like the prongs in her nose as she takes every opportunity to try to get them out.       

Here are some pics from my visit today.  Her belly is actually starting to look a little chunky :)

Slow and Steady

"There is no royal road to anything.  One thing at a time, all things in succession.  That which grows fast, withers as rapidly.  That which grows slowly, endures."
                                                                                   - Josiah Gilber Holland

I am not the most patient person in the world and although I appreciate that Veronica is doing well, I am anxious for more progress to occur.  I sometimes have to remind myself that each day is progress - each day she continues to grow and get stronger.  The doctors continue to have positive comments on her progress.   Today the attending neonatologist said she was doing "great" and the fellow said she was doing "remarkably well."  These are comforting statements but they don't change the unfortunate fact that Veronica has been in the NICU for two months and still has another one - two months to go before she can come home. 

There are several important steps that need to occur before any consideration is given to discharge.  One of the first ones is being able to feed by mouth.  Currently she is fed through a tube that goes directly into her stomach.  Her feedings are over the course of an hour.  When she is around 34 weeks gestational age (next Thursday) consideration will be given to introducing a bottle.  Unfortunately, breastfeeding would be difficult at this point and is not recommended by the NICU staff.  The lactation consultant has assured me that nursing will be possible somewhere down the road.  Until then, I'll continue pumping, and pumping and pumping..... 

Veronica will also need to be off of CPAP (continuous positive airway pressure).  The CPAP is used to keep her lungs inflated.  It also has the added benefit of growing lung tissue.  As we understand it, the longer she is on CPAP, the better she will do when she comes off of it.  So basically they are in no rush to wean her.  The other piece is that she needs to no longer require supplemental oxygen.  Her oxygen requirement has been low lately and today she was at 21% which is essentially room air which is excellent progress.  When Veronica reaches approximately 1600 grams, they will likely begin to wean her off of the CPAP.  Right now she is at 1420 grams. 

Veronica will also need to be able to regulate her temperature.  We can expect this to occur when she is approximately 1800 grams.  This is when she will be moved out of the isolette. 

Finally, she will need to no longer have episodes of apnea (when she stops breathing) or bradychardia (whe her heart rate drops).  As I understand it, most premature babies grow out of these "a's and b's" by their due date but potentially she could be discharged with an apnea monitor.

So there are several more hurdles to overcome.  And the progress will be slow, but steady.......

3 lbs

She did it!  Veronica is 3 lbs today and doing well!!  By this time next month she should be 4 lbs and close to coming home.  Here is a recent picture of our "big" girl.

Got Milk?

I started pumping the day Veronica was born and have continued to do so 8-10 times a day since.  Right now she is fed less than an ounce of milk every three hours but I am pumping much more than that.  Here is the result: 

Liquid Gold!!

54 Days

Veronica has been in the NICU for 54 days but it feels more like 154.  I'm hoping we are past the half way mark but its impossible to know at this point when she will be discharged.  And even after 53 days, she is still the smallest baby in the NICU.  But she continues to do well and is getting closer to the big "3".  At her last weigh in she was 1280 grams which is the equivalent of 2 lbs, 13 oz.  So it should only be a few more days and we'll be able to celebrate another milestone. 

There haven't been any major changes to her care and we don't anticipate there being any in the near future.  Sometimes it feels like the progress is slow but then we look back on her first day of life and we remember how far she has come.

7 Weeks

Veronica is 7 weeks old today and has already doubled her birth weight. She is currently 2 lbs, 9 oz .....3 lbs here we come!  Go, Veronica, go!!

Veronica is still doing well.  The doctors said that the fact she is doing so well  means she is less likely to have significant neurological problems down the road.  She will have an MRI when she is near term to give us a better idea.  And once she is discharged she will have follow appointments at the developmental clinic at Children's National Medical Center in DC to track her progress.  We try not to worry about potential long term issues at this point.  We're still taking it day to day, enjoying her growth.  Here are some photos from today - she is wearing a hat made by her Aunt Kate.  Thanks Kate!

  

 

Gratitude

Andrew and I are extremely grateful for all of the support we have received over the past 7 weeks.  Without a doubt it has made this very difficult journey more bearable.  The cards, emails, quarters (for parking), gas cards, gift cards, Edible Arrangements, meals, babysitting, prayers, etc....we are so thankful and feel incredibly blessed to know such wonderful and generous people. 

I just can't say it enough...thank you, thank you, thank you!! 

Other Preemies

It's clear that there has never been a better time to be born prematurely.  But prematurity has always been part of the human experience.  The following notable people were born well before term:

Isaac Newton
Jean-Jacques Rousseau
Voltair
Johann Wolfgan von Goethe
John Keats
Mark Twain
Winston Churchill
Albert Einstein
Willie Shoemaker
Stevie Wonder (his prematurity accounts for his blindness)
Napolean Bonaparte
Charles Darwin
Renoir
Richard Simmons
Sidney Poitier
Michael J. Fox
Veronica Ament

Eye Exam

Veronica had her first eye exam yesterday which we were somewhat anxious about.  The majority of micro preemies have some form of ROP (retinopathy of prematurity), with the most severe cases resulting in permanent eye damage or possibly blindness. Veronica’s results were positive and there was no evidence of ROP.  While ROP could still develop in the future, it should be able to resolve itself at that point without complications.  This was great news to hear and one less thing to worry about.

Meanwhile, Veronica continues to grow.  She currently weights 1080 grams (2 lbs, 6 oz).  The goal is for her to gain on average 15-30 grams (.5 – 1 oz) per day.  They have added more calories to the fortifier that is already mixed in with the breastmilk.  This should help her gain weight a little faster without having to add more volume to a tiny little belly. 

In another week or two, they will probably start transitioning Veronica from the bubble CPAP to room air.  This will obviously be a huge step but there is no rush as the bubble CPAP is actually good for her in that it allows for the growth of lung tissue.  Apparently the longer babies stay on bubble CPAP, the better they do once they come off.  Another significant change will be feedings by mouth, which should start in about three weeks.  And at some point, when Veronica is able to regulate her body temperature (which is more related to weight as opposed to gestational age), she will move from the isolette to an open crib.  So lots of challenges but so much to look forward to over the next few months!!