Two Steps Forward, One Step Back

We are learning that having a child in the NICU is not a day-to-day event. Conditions can change more quickly.

This morning was fabulous: We were finally able to hold Ingrid!!! Mommy held her for a while and then Daddy was able to hold her for over two hours - rocking, singing, cooing. It was wonderful.

A little later, Dr. Ponsky (an elementary school classmate of mine), came in to change the dressing on Ingrid's omphalocele. He said everything looked encouraging and that she was progressing nicely.

An echocardiogram (ultrasound) of Ingrid's heart showed that her heart is functioning well and the repair to her artery is looking good.

Unfortunately, later in the afternoon Ingrid seemed more uncomfortable and her breathing was more labored. The amount of oxygen flowing through her nasal canula (the tube going up her nose) was upped to 50% (what we all normally breathe is 21%) because the amount of O2 in her blood appeared to be dipping slightly. A test of the gases in her blood indicated that she wasn't breathing deep enough breaths to get rid of enough CO2. In order to get to her artery during her surgery they had to collapse or partially collapse her left lung and her doctor thinks that it hasn't fully recovered and isn't inflating properly.

I had to leave at 5:30 pm before any decision had been made, but it looks like Ingrid will have to go back on the ventilator. It's disheartening but we understand that she needs a break from struggling to breathe so that she can fully recover from her surgery. We are learning to take it all in stride - hour-by-hour.

Off the Vent

Today was a pretty good day. Ingrid was taken off the ventilator this afternoon because she appeared to be breathing well. She will be watched closely but there is only a small chance that she will need to go back on it.

She had retained excess fluid so she was given a diuretic this morning and by the afternoon had peed between 250 and 300 mL!

Mom and Dad hung out with her all day - cooing and singing to her and generally loving her. Dad helped out by taking her temperature and her blood pressure.



Later, with Auntie Emily and Uncle Jim in the room, Mom and Dad changed the dressing on Ingrid's omphalocele. Once we are comfortable with the procedure it will be our job for the remainder of the time while Ingrid is in the hospital and, of course, once she comes home.

Back to the NICU

Ingrid had to go back on the ventilator at about 1:30 this morning. She was not comfortable so she was given some pain medicine which caused her to slow down or stop breathing (as she has done a few times now.) Once she was re-intubated she was able to rest more easily because she could have pain medication.

It looks ugly, but it is only temporary and only for pain management. Her lungs work well - in fact the ventilator is set for 25 breaths per minute but Ingrid is breathing twice that.

After an overnight rest at home Mom & Dad were back for a peaceful morning with Ingrid. We met Ingrid's primary nurse, Tracie. The plan is for Mom & Dad to take over as much of Ingrid's care as we can so that we can get her out of the NICU and home as soon as possible. The second picture shows Kate and Tracy changing Ingrid's diaper.

Dr. Barksdale, Ingrid's pediatric surgeon in charge of fixing her omphalocele, showed us how to change the dressing on her O. He said that Kate will do it tomorrow and she will teach him how to do it on Monday. Then I guess it's Daddy's turn! We will have to learn how to do this because Ingrid will go home for a long time (months) before she has surgery to close up her O.

Dad left at noon to be with Anna and Mom stayed so she witnessed another respiratory crisis. This time, though, it was more of a mechanical failure - mucus blocking the tube - than drug induced. Kate said there were about 10 doctors and nurses in the room working to resuscitate and stabilize Ingrid. As more time passes Ingrid should need less pain medication and will not need the ventilator so these episodes should end. No more, please!

Crises aside weekends are more peaceful at the hospital and we are all falling into a workable routine.

A Day of Recovery

Ingrid is resting easier now after a difficult night. The doctors decided to take her off the ventilator last night because she was able to breathe on her own. However when she was given pain medication she stopped breathing. This happened 2 times during the night with 2 different pain medicines - obviously both times she recovered, but what a night!

Daddy arrived early in the morning to watch over her. Throughout the morning she seemed to be fairly comfortable and made sighing sounds as she breathed.

We took advantage of the different rules for visitors in the PICU so that Anna could finally meet her little sister. Anna is realizing that Ingrid is no longer in Mommy's tummy and that she is a real baby that moves!

Ingrid was transferred back to the NICU this afternoon. Mom spent the afternoon with her while Dad went home with Anna. Kate has been discharged from the hospital so, pain pills in hand, she plans on spending the night at home tonight.

All the doctors and nurses agree that Ingrid is a trooper. She's strong and resilient. And now that her artery surgery is behind her she can focus on growing so that she can come home soon!

Surgery

The first picture shows Ingrid's omphalocele exposed while her dressing was changed. And the second one show's Ingrid after her surgery today...

But first the good news! Ingrid had 2 poops during the night and Kate helped change a 3rd poopy diaper early this morning. All this pooping means that her digestive system is working well! Daddy had his chance to help change a diaper later in the morning and he even got to hold Ingrid, briefly, while her nurse changed her bedding. Our baby-parenting skills are coming back slowly.


It turns out that Ingrid needed surgery on her aortic artery today. Without medication her artery was too constricted to allow enough blood to flow to her abdomen and lower extremities. After our roller-coaster yesterday it was somewhat of a relief to have the surgery sooner rather than later.

She went into surgery shortly after noon - Mommy & Daddy are getting awfully good at waiting. We received a few messages on a pager about her progress during the operation and were relieved when the surgeon came and told us the surgery was successful. He cut out the coarctation (I don't know if that's the proper spelling) and reconnected the artery adding a patch for good measure. Ingrid is spending the night in the Pediatric Intensive Care Unit instead of the NICU because the nurses there are more comfortable helping kids recover from heart surgery. (It's hard to see in the picture but they had to restrain Ingrid (with gauze and safety pins) because she was moving around too much. Feistiness is a good sign!)

We are relieved that the 2 major complications discovered after birth have been resolved. She will need a few days to recover from her surgery, then we can focus on managing her omphalocele. Overall it was an emotional day that ended on a positive note!

Thank you to everyone for your prayers and support - it's working!!

Good News, Bad News

The good news is Ingrid pooped this morning! This means that one potential problem has been averted.

Kate was able to stand up today, so she could get close enough to kiss Ingrid.

Ingrid's heart and lungs are functioning well and there have been no new complications found. Ingrid's kidneys were examined today, too.



We had a roller coaster day regarding surgery to repair an artery: This morning the cardiologist said she would need surgery but he wanted a surgeon to look at the data. Later in the afternoon we met the surgeon who implied that Ingrid would need surgery on her heart in the next year or two in addition to surgery tomorrow. In the span of 10 minutes we're back to where we were yesterday. Ingrid will not need surgery on her heart and the doctors decided to discontinue the medication that is keeping her PDA (the fetal connection between her pulmonary and aortic arteries) open to see if, indeed, she need surgery. Whew!

We will know by Monday if she needs surgery to repair her artery.

We were able to watch the doctors change the dressing on Ingrid's omphalocele and I've posted a picture that shows the best view I had during the procedure. It's big and ugly, no denying that, but there is a fair amount of skin growing up the sides. As far as we understand, when she has enough skin they will close it over the omphalocele. Once skin is covering the O she won't need a sterile environment and will likely be able to come home. (She won't be fully repaired for a while.)

Today was a day of many visitors. Both sets of grandparents were able to see Ingrid. Big Sister Anna was able to visit mommy but she's too young to go into the NICU.

Happy Birthday, Ingrid!!!!

6/8/10 1:30 pm 6lbs 7oz

The sweetest sound I heard today was Ingrid's cry as soon as she left her mommy's tummy.

Her lungs and heart are working great! Much to our relief.

And, yes, she is beautiful!!! Hard to tell hair color but she has some. Note the chubby cheeks and the gorgeous hands and fingernails. We spent a half-hour stroking her fuzzy shoulders and trying to figure out who she looks like.

Of course there were a few surprises: Although her heart is fine, there may be a problem with one of her arteries - it may not be able to pump enough blood to supply her abdomen and lower extremities. We will know if she will need surgery to fix this problem in a few days. Also, she may have a problem with the tail end of her digestive system. Again, we'll know more in a few days.

Her omphalocele is that mass of gauze between her arm and her leg. She needs to grow some skin (and muscle?) before the doctors will close her up. And, yes, we will know more in a few days.

Ingrid was born at 1:30 pm but it wasn't until 8:30 pm that Mommy and Daddy were able to visit her in the NICU. It was a long day of waiting with more waiting to come.

Kate is doing well, although I'm afraid she won't get much rest tonight. She wants to visit Ingrid again and get started on pumping that breast milk.


Thanks to everyone who sent us good thoughts and prayers! Ingrid still needs a lot of them!