Progress

Veronica made significant progress today. In terms of her breathing, she was able to trial off CPAP for 6 hours. This was wonderful news and we were so proud of our baby girl. Once the CPAP was put back on, her nurse offered her a bottle and she finished the entire bottle (40 ml) in 15 minutes. With her previous bottles she only consumed about 15 ml and the remaining milk was given to her through her feeding tube. The doctors also said that she can be given an additional bottle on each shift if she continues to tolerate the feedings well. We were also able to try breastfeeding today and Veronica did amazingly well. I'm not sure how much milk she actually got but it was a great start. It will probably be weeks before she is able to nurse exclusively but it is definitely something we want to work towards.

So we are moving in the right direction and it feels like we are finally starting to pick up the pace a little bit. Go, Veronica, go!

First Bottle

Today the doctors finally ordered that Veronica give feeding by mouth a try.  For most babies, 34 weeks gestational age is generally when they are able to coordinate the actions of sucking and swallowing with their breathing.  Veronica is 36 weeks and was more than ready to give it a try.   She was taken off CPAP and she did beautifully.  Initially it seemed like she wasn't sure what to do, but eventually she guzzled all 15 ml of her milk.  Veronica's nurse said it was a great sign that she did it so well.  That should hopefully mean she'll get the feeding thing down pretty quickly, which would be one less thing keeping her in the NICU.   We still need her to get off of CPAP though.  But last night after I left, she did almost two more hours trialing off.  So she was off of CPAP for a total of two and a half hours!!  Go, Veronica, go!!  

Trialing...

I held Veronica this evening as she was trialed off of CPAP.  She was alert and lasted about 45 minutes before she started to desat.  She seems to have more success trialing off at night so I am envisioning more late night NICU visits in the near future.  We love to hold her without her CPAP.  Now if we could just get that feeding tube out...

"No CPAP!  Now you can see that I look just like my big sister, Josephine!'

2 Kilos

Veronica hit another milestone this week by reaching 2 kilograms.  The NICU keeps track of her weight in grams and of course we keep track in pounds and ounces - but we enjoy celebrating the milestones in both measurement forms.  As of last night, Veronica weighed 4 lbs, 8 oz so Liesl will need to start working on the 5 lb sign in the near future.  But just for the record, weight is not going to be a determining factor in Veronica's discharge. The weight part she seems to have under control, along with the her temperature regulation.  It's the breathing part that she still needs to work on.

Veronica continues to trial off CPAP daily but has yet to last beyond her record of two hours. Most days she is only able tolerate 15 minutes before she desats and needs to be put back on. We know she would much prefer to be done with CPAP altogether - she tells us each time the nurse puts the prongs back in her nose. But the reality is that she is just not ready yet and nobody can really tell us when she will be ready. So she will continue to trial off everyday and hopefully the time she is off will begin to increase. Once she is finally off of CPAP, she will need to remain completely off for two weeks before any consideration is given to her coming home. She will also need to be stable with oral feeds which she hasn't even started yet since the docs were hoping she would be off of CPAP by now. But now they have said that CPAP or no CPAP, she will start feeding by mouth this week.  That will be a big step for her.

We are about three and a half weeks from Veronica's due date and at this point it feels unlikely that she will be home by then. But at least we can see the light at the end of the tunnel. To think that she could be home in 4 or 5 weeks seems like no time at all considering she has already been in the NICU for 12 weeks. She has come so far in those 12 weeks and we are so grateful for how well she has done. We are reminded every day that her journey could have played out so very differently. She is no longer the smallest baby in the NICU and it's been weeks since she was the most vulnerable. It's difficult to see some of the other babies who are not doing as well.  Our prayers are with them and their families.  We thank God every day and pray that he continues to bless our family with Veronica's progress.

Here are some pictures from this week:

Notice the "V" in the corner of the crib - Liesl made that for Veronica.

I think those cheeks are getting chubby.

Theodore

Sebastian - reluctant to visit the NICU but all smiles once he got there.

Liesl made this pillow for Veronica's crib.

Proud big brother Linus.

2 Hours

I just spoke with Veronica's nurse and she informed me that Veronica has been off CPAP for 2 hours!!! The CPAP is about to be put back on but this is significant progress. Let's hope it continues. Go, Veronica, go!

Update

Veronica is holding steady on CPAP.  She will be 36 weeks in two days and we were really hoping and expecting that she would have been off of it by now, or at least close to being off of it.  They are continuing to trial her off every day but she is still only lasting about 15 minutes before she starts to desat.  We are not discouraged by this, just a little anxious to get things moving towards discharge day, which we are still hoping will be by her due date (August 4).

Veronica still has not tried a bottle yet as they are still hoping to get her off of CPAP.  As far as I'm concerned there is no rush to bottle feed.  I am secretly hoping they will just wait until she gets to the point when we could give nursing a try.  After five breastfed babies, it feels so wrong to offer a bottle first.      

Two days ago Veronica had a blood transfusion because she was anemic, a common occurrence for micro preemies.  We were not necessarily surprised that she needed the transfusion, just a little disappointed.  I can never get used to the idea of  Veronica being poked and prodded.  But the good thing is that it's over now and the transfusion helped her saturation level (i.e. fewer desats).  Hopefully that will be the last transfusion she needs for the rest of her life. 

Some recent pictures:

Sebastian visits Veronica in her new crib.

Grandpa Williams

July

What a relief it was when July arrived.  We can finally say that Veronica will likely come home either this month or the next.  Her homecoming is something I think about every single day.  She still has a ways to go but we are confident she will get there.  Getting off of CPAP remains the biggest hurdle at this point.  Yesterday she was weaned down to PEEP 5 (the lowest CPAP pressure setting) and has tolerated the change very well.  Today the doctor ordered that she be given a diuretic for the next three days to see if that will release any excess fluid in her lungs which could be impacting her breathing.  She started the diuretic today and an hour later the nurse trialed her off CPAP.  She only lasted 15 minutes.  The fact that she is still on CPAP is nothing to be overly concerned about, but I think the doctors expected that she would have been off by now.  We did too.  I have to keep reminding myself that she will come off of it, eventually it will happen.  But for now, we are still enjoying the newness of her open crib.  What a difference it is to visit her and not have the plastic wall of the isolette in between her and us.  We plan to bring the older children in tomorrow so they can visit Veronica in her new crib.  I can't wait until they see their baby sister up close.  They're going to love it!