Sunday, July 31, 2011

Still Going Strong

Veronica has been off of CPAP since 8:30am on July 30 and she is still going strong.  We still don't know if she is off for good - often babies will need to go back on for a short time to get some rest.  But for now Veronica is doing well with her breathing and her PO feeds.  She has had a few "events" during her bottle feeds but they were self resolved and nothing to be overly concerned about.  But it is these "events" that must be completely eliminated before she can be discharged.  It is still hard to say when that day will come...it's all up to Veronica.  But we are certainly getting close which is something we are all very excited about.  




24 Hours

Veronica had a great night. She has been off CPAP for 24 hours!!!!! And she has been finishing her bottles!!! She did have one of her last eight bottles by tube but that's ok. She has made a giant leap forward and we are thrilled. Please say some prayers that she will be able to come home soon.

Saturday, July 30, 2011

Back on Track

I think we are back on track now and moving in the right direction.  I'm not sure that we ever really even took a step backwards.  It sure felt that way, but I think it was just a pause, or a slowing down to give Veronica a chance to catch her breath (no pun intended).  We have to remember to move at Veronica's pace and that slow and steady is a good thing. 

Veronica has been trialing off CPAP today and has been off for 10 hours and is still going strong.  She is tolerating her PO feeds quite nicely and generally is able to finish her entire 50 ml bottle.  Sometimes she still gets too tired to finish and the remainder of her milk is put through her OG tube.  But today, Veronica's nurse thought it would be a good idea to remove the tube since she is able to finish the majority of her bottles.  Apparently the doctor agreed, so out came the tube.  I'm not sure if this is permanent or not - but for now, we'll take it!  I think today was the first time we've ever seen her with NOTHING attached to her face.  She looked amazing!!



Trying out her car seat for the first time. 


Wednesday, July 27, 2011

OT Assessment

Some photos from Veronica's assessment with the occupational therapist:





100 Days

Veronica has been alive and in the NICU for 100 days.  In celebration, Liesl made a special sign to hang by her crib side:

"Your birth is old news, now lets get that CPAP off for good."
On her 100th day of life, Veronica had a visit from the occupational therapist.  The OT's initial impression was that everything looked good but she will conduct a more thorough assessment over the next few days.  She also received another eye exam, the fourth of probably a long line of eye exams.  At her last exam, Veronica was diagnosed with Stage 1 ROP (retinopathy of prematurity).  ROP is a condition that is fairly common among micro preemies.  As with most other complications associated with prematurity, those babies born earlier and who have a very low birth weight are at greatest risk.  The most severe cases of ROP require surgery and can often lead to blindness.  Today, Veronica was diagnosed with Stage 2 ROP which is still on the mild side and as we understand it, can still resolve itself without further intervention.  For now it means that she will need another follow up exam in the NICU in two weeks.  Hopefully the ROP will not progress.  Please say some prayers!

On the home front, we have had some challenges over the past week and half.  Andrew threw his back out last week and is still suffering as a result  Yesterday, Josephine had a febrile seizure and continues to have a fever.  Today, Sebastian woke up vomiting.  And for the first time in 100 days,  I did not visit Veronica.  I had a low grade fever which prevented me from entering the NICU.  It may be another 48 hours before I can return which breaks my heart. 





Tuesday, July 26, 2011

NICU Roller Coaster

Today we experienced what we felt was a step backwards. During rounds, the doctors decided that instead of Veronica trialing off of CPAP once a day for as long as she can tolerate, she will only trial off for her feedings and then be put immediately back on CPAP. The reason for this ts that after trialing off for a record 16 hours yesterday, she apparently was just too tired to take her bottles and ended up taking her feedings by tube. This change in her care was incredibly disappointing to hear. It may have been that we all were expecting too much of her too soon. It's a lot to ask her to take all of feedings by mouth while still trying to breath without any support. So we need to just take it day by day and let Veronica determine the pace.....slow and steady, I guess.

I have heard the phrase NICU roller coaster on more than one occasion. The past two days are a perfect example of that roller coaster. Yesterday I was feeling so hopeful, and thinking that she might even come home sooner than later. Today was a complete turnaround. I felt much like I did three months ago, that we may never get out of the NICU. I tell myself that she is doing well and has come so far but it is still difficult not to feel discouraged on days like today.

Tomorrow is sure to be a better day. We're expecting to hit 6 lbs soon so that will be something to celebrate.

Thanks for all of the support and prayers, and for continuing to walk with us on this journey.

Monday, July 25, 2011

More Progress

Today the doctors ordered that Veronica can begin taking all of her feedings by mouth, either by breast or bottle. This is a huge step and a strong indicator that she is progressing well with her PO feedings. Her OG tube will remain for now so that she can continue to get additional milk after she is breastfed and also for the few occasions when she is too tired to finish her bottle. Once she is completely off CPAP, the OG tube will be removed and she will get an NG tube through her nose, which will make her PO feedings easier since she will no longer have a tube in her mouth.

In regards to her CPAP, Veronica has been off for 12 hours today and is still going strong. This could be it....or maybe not. It's impossible to know, but either way we are definitely moving in the right direction. Hopefully only a few more weeks.....

CPAP Update

Just a quick update - Veronica was off of CPAP for almost 15 hours yesterday! Hooray! Go, Veronica, go!

Sunday, July 24, 2011

Eating and Breathing

Veronica is maintaining her slow and steady progress.  Her PO feedings (feedings by mouth) have increased to six per day and the remaining two are still gavage (tube).  For the most part, she is able to finish her bottles completely.  When she doesn't, the remaining milk is put through her OG tube.  Her progress with PO feeds has been significant, especially since oral feeds for a preemie are more challenging than oral feeds for a full term baby.  The sucking, breathing and swallowing reflex is a lot for a preemie to master.  As we feed her, we are told to watch her closely to see if her color changes or if we notice a change in her breathing. In the NICU, the monitor will tell us if she stops breathing but we won't necessarily have a monitor once she is discharged.  Overall, Veronica seems to be getting it and is learning how to pace herself appropriately.  We're hoping she will be on full PO feeds real soon which would mean another step closer to her coming home.  We've also had a few good nursing sessions which is encouraging.  Of course with breastfeeding it is difficult to tell how much milk she is getting so she is given additional milk through her OG tube after each session.

In regards to breathing, Veronica continues to be on CPAP for the majority of her day.  We really thought she would be off by now but we are assured that every baby is different and she will come off when she is ready to come off.  Veronica had one day when she was off for 11 hours and we were thrilled.  But most days she seems to average 5 or 6 hours. 

She was given a blood transfusion two days ago because she was anemic again (a common condition for micro preemies).  This was disappointing but we were told that the transfusion would possibly help her to come off CPAP.  But the day after the transfusion, when she trialed off of CPAP she only last 45 minutes.  This felt like a huge setback.  Although we know its part of the process (two steps forward, one step back), its difficult not to feel discouraged when we are hoping for so much more.  We try to remember though, that Veronica is doing amazingly well overall.  Sometimes, its just hard being patient.  But today Veronica has has been off of CPAP for 7 hours and counting.....could this be the day she stays off for good?  Go, Veronica, go!!     

Friday, July 22, 2011

Siblings

Sunday continues to be the day when we bring the other children in to see Veronica.  Despite the long drive, they look forward to the visits and even ask to visit more frequently.  I am so proud of our children, as they have had to endure some sacrifices this summer with all of our comings and goings to the NICU.  They have been amazingly resilient over these past few months, something for which we are very grateful. 

I can't wait for the day when Veronica is old enough to look at these photos and know how much she was loved by her older brothers and sisters.   Although we can't get any photos of Josephine and Veronica together, we talk about Veronica constantly and I think Josephine finally understands that "Baby V" is a real person.  I anxiously await the day the two of them will meet.    

Thursday, July 21, 2011

38 Weeks

Veronica is slowly but steadily making progress.  She continues to trial off of CPAP everyday but the time she is off varies significantly.  Today she was off for about 4 1/2 hours but several days ago she was off for 11 hours.  One would think the time off would increase each day but that is not necessarily the case with preemies.  We are reminded to be patient - she will come off of CPAP when she is ready to come off of CPAP.  Her feedings are going well and the amount she is taking per feeding has increased to 48 ml which is just over an ounce and a half.  Half of the feedings are through her tube (gavage feeding) and the other half are by mouth, either breast of bottle.  The bottle feeding is going well for the most part but the breastfeeding is something we are still working on. 

It has become clear to us that Veronica will not be home by her due date of August 4.  While I knew all along it was impossible to predict when she would be home,  I couldn't help but hope she would be discharged by her due date.  So we will keep up our daily visits and continue to pray that she can come home to us soon.

Liesl and Andrew visited Veronica this morning and Liesl was thrilled to get to hold her baby sister.


Meanwhile, I took her other baby sister, Josephine, to the emergency room at Montgomery General.  (Don't ask why!)  Andrew and Liesl left George Washington immediately after that and met me, Josephine, Theodore, Linus and Sebastian in the ER.  Andrew stayed with Josephine for four hours while I left with the others.  Our fabulous friend Maria took the oldest four for several hours (thank you!) while I went to the NICU to be with Veronica and then later to work.  When I woke up this morning I had no idea our lives could get any busier then they already were......


Josephine in her hospital gown.  She is home now and doing fine.  

  

Sunday, July 17, 2011

No CPAP!




Gains and a Loss

Veronica has made significant gains with her breathing over the past few days.  Yesterday, when she trialed off CPAP she managed to stay off for almost 11 hours and today she was off for 6 hours.  We can't wait to see how long she will be off tomorrow and the next day and long for the day that she will be off for good.  She is growing and getting stronger everyday but still has a little ways to go.

While Veronica is trialing off of CPAP, the doctors have ordered that she not be fed by mouth.  The reason for this is that it takes too much effort for her to breath and drink from a bottle at the same time.  We tried it yesterday and I could see what a struggle it was.  Veronica began desatting and at one point she stopped breathing.  The nurse immediately gave Veronica oxygen and the event was quickly resolved.  It was a little disheartening but I was assured it was all part of her being a preemie.  Sometimes, although only briefly, I forget how young she was when she was born.  And although she is 37 weeks now, she is nowhere near being in the same position as babies who are born at 37 weeks.  Had she been born today, we probably would have never seen the inside of the NICU.  We would never have known what CPAP was and we would never had to worry about desats, bradys or apnea episodes.  Yesterdays episode reminded me of how fragile Veronica was, and continues to be.  But today, we were reminded of how blessed we are that Veronica is doing as well she is.  Another baby in the NICU, the baby directly across from Veronica, was not so lucky and passed away today.  Although we don't know the details, and of course the nurses are not able to share, we cannot help but feel terribly saddened by this loss.  We thank God for Veronica's health as our thoughts and prayers go out to the family.         

Friday, July 15, 2011

5 lbs

It's hard to believe but Veronica is 5 lbs today. I am guessing she will be 6 lbs by the time she is discharged. Amazing!!

Thursday, July 14, 2011

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!

Tuesday, July 12, 2011

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!'

Sunday, July 10, 2011

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.

Wednesday, July 6, 2011

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!

Tuesday, July 5, 2011

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

Saturday, July 2, 2011

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!