More Good News

Ingrid has been doing so well her doctor decided to push her a little today: She'll get 4 feedings of 22mL and then go up to 27mL. (Instead of 24 hours and 8 feedings at one amount.)

He also said that we might be moving to the step-down unit tomorrow!!!

She is stable and fully recovered from her surgery, her only issue is working up to full feedings which she doesn't need to do in the NICU. We are that much closer to going home!

We had a visit from an occupational therapist to assess how well Ingrid is able to feed and what we can do to help her get where she needs to be. It was a very helpful and informative session.

In other news: Grandma surprised us with a visit and enjoyed watching Ingrid have her lunch. Grandmas was excited to see Ingrid with her eyes wide open!

21 Days

Ingrid is 3 weeks old today!

Daddy held Ingrid for a long time today and helped her suck down 17mL!

She has been doing a great job with her feeding. So much so that her doctor said that she might be transferred to the step-down unit (Neonatal Transitional Care Unit) by the end of the week!!! That's one step away from being home!!!

Of course this all depends on what Ingrid decides to do with her food in the next few days. She has had a great streak, increasing her feeds by 4 or 5mL per day for the last 3 days.

We are optimistic, cautiously optimistic, but optimistic!

Up and Up

We spent another fine day with Ingrid. Another routine day!

Ingrid's doctors decided to up her breastmilk intake to 12mL today. I think it was a good sign that they did not spend very long in her room during rounds today. Her only real issue is feeding.

We still have a long way to go and she will likely need another 24 hours at 12mL before we increase her feeds again. As Ingrid's nurse pointed out 8 to 12 is a 50% increase!

Ingrid's omphalocele is changing noticeably - it is firmer and appears to be scabbing over. We only use one 5 by 9 piece of Xeroform these days.

Up to Eight

Ingrid tolerated her 5mL feedings so the doctors decided to giver her 8mL per feeding today. Daddy tried to negotiate for 10mL but we finally agreed to take it slow.

During rounds the doctors made it clear that Ingrid's main focus right now is working up to full feedings (50-60mL at a time).

When pressed her doctor said that if all goes well we could take Ingrid home (to grandma and grandpa's house) in two weeks! The last 3 or 4 days we would spend in the transition unit to prepare Ingrid for discharge.

So now we wait and pray that she continues to tolerate her feedings well. We want to take her home so badly!!

Lazy Saturday

Not much to report today. Ingrid practiced sucking down 5mL of mama's milk a few times. Mommy held Ingrid for most of the day while Daddy watched World Cup.

The long slow process of working up to full feedings is very difficult for us as parents. We want Ingrid to be ready to go for it but we don't want to stress her out and backtrack so we defer to the doctors' regimen.

Ingrid's omphalocele continues to improve - Kate says it is drier and firmer today. (Daddy wasn't there for the dressing change today.) We continue to remark about how much smaller it looks.

Thanks to everyone for the continued support - the phone calls, the cards, the prayers and good thoughts. This would be so much harder without you!

A Teaspoon

Progress! Ingrid was upped from 3mL to 5mL per feeding! 5mL is about one teaspoon. It is a long, slow process and the only thing keeping Ingrid in the hospital. Once she is able to eat full meals on her own she will be able to go home (at least to grandma and grandpa's house) until she is big enough for her omphalocele surgery.

We worked on feeding her by mouth today. She did pretty well but it's hard when we have to wake her up to feed her. There is nothing like watching those cheeks moving while she's sucking down some of mama's milk!

Her doctor said that if she tolerates 5mL then we can up it to 10mL by the end of the weekend! Of course we must remind ourselves that this is Ingrid's show and she is calling the shots.

The cardiologist said that she is basically recovered from her coarctation surgery and that if it weren't for her omphalocele she would be going home.

Ingrid's O is definitely getting smaller - today we used only one piece of Xeroform to cover it. It has gone from softball-sized to baseball-sized.

All in all it was another routine day!

The Routine

We have our routine down now: We arrive at the hospital by 8:30 am and wait for rounds. During rounds we get to talk to the neonatologist in charge of caring for Ingrid. He and his team discuss Ingrid's progress and decide what needs to be done each day. The current focus is getting Ingrid used to food in her stomach.

On that front, Ingrid had three feedings while we were with her today, none by mouth. And she had easily half a dozen poopy diapers. That means her plumbing works!

During the time between feedings we hold Ingrid (and change diapers.)


At 3 pm we change the dressing on Ingrid's omphalocele - at this point we are quick and confident. Everyone agrees that her O looks smaller than it did last week. We use 2 pieces of Xeroform to cover it, but now we can almost cover the whole thing with just one piece. Each piece is 5" x 9".

We also met with a hematologist today because some of Ingrid’s blood tests suggest that she may not have a spleen or that it isn’t functioning properly. All the doctors assure us that this is not a big deal and if her spleen isn’t working (or if she doesn’t have one) it just means that she will need to be on prophylactic antibiotics for a number of years.

We are encouraged by days like today but we keep reminding ourselves that everything must happen at Ingrid’s pace.

Patience

Yet again Ingrid teaches us that nothing comes easily in the NICU.

She seemed to tolerate her feedings yesterday, but last night was a different story. She spit up some and some just sat in her stomach. She also had some blood in her stomach and in her stool so she was put on Zantac to soothe her digestive system.

We are eager to get her eating full meals so we can take her home but Ingrid keeps telling us that she has to go at her own pace. Her doctor assured us that no baby in her position tolerates their feeding the first time.

After a 12 hour break we tried feeding her again and she seemed to do well. The doctors decided not to giver her anything by mouth because she is breathing too quickly, afraid that she couldn't coordinate the breathing and swallowing fast enough. So, her noon feeding was sent directly to her stomach and was not there at 3 pm. (Her nurse sucks out the contents of her stomach before feeding to see what's there. It looks harsh but she doesn't seem to mind.) Prior to her 3 pm feeding there was virtually nothing there which means she was digesting her noon milk.

Both Mommy & Daddy held Ingrid for several hours today but she got a little fussy this afternoon. Now that she is off morphine she is very alert when she is awake and she is awake for longer periods of time. We make faces at each other and sing and play with toys - regular baby stuff!

Edit: Meanwhile back at home Anna is having a great time with Grandma and Grandpa!

Two Weeks Old

Ingrid is now off of her morphine drip! She had been weaned down to 3 micrograms per kilogram per hour which is a ridiculously small amount - the nurses didn't think their pump could be set any lower. So now she is off almost all medications except for Tylenol and antibiotics.


We continued to work on feeding - she's up to 3 mL each time. She still isn't able to do it all by herself so she did get some pumped directly into her stomach today. But, like yesterday, she sucked down her whole meal after her 3 pm O-dressing change.

Mommy and Daddy held Ingrid a lot today and we were able to take many smiley baby pictures.

I've included this last picture for people interested in Ingrid's omphalocele. As you can see she has quite a bit of skin growing up the sides. We will continue to dress her O as it scabs over and becomes hard to the touch. Ingrid will be discharged from the hospital at some point this summer and then we will take care of her at home. She needs to grow larger so there is enough space in her abdomen for all her organs. In six to nine months she will have surgery to completely fix her O.

Feeding Time!

It was a big day today: Ingrid got her first taste of Mama's milk!

Her nurse suggested that we try to feed her through a nipple to see if she would suck and swallow instead of just sending the milk directly to her stomach via the OG tube. The first two tries she took in a little by mouth but most went in through the tube. By the third feeding today Ingrid was doing it on her own!

She gets 2 milliliters every 3 hours (5 mL is about a teaspoon) for the first day and we up it from there. If all goes well she will be getting about 50 mL per feeding up to 8 feedings a day by next week.

Otherwise it was another relaxing day. Mommy & Daddy took turns holding Ingrid all morning. She was awake and alert and happy.

Happy Father's Day

Happy Father's Day to all the fathers out there!

Ingrid wasn't quite ready for food today, but the doctors decided to replace her OG tube with a smaller one for the initial feedings that should start tomorrow.

At least we had some time with a wide awake and tubeless Ingrid this morning!

Not So Fast

Despite the fact that Ingrid pooped twice yesterday the bilious output through her OG tube was too much. So, we have to wait a little longer before we can feed Ingrid. (She's getting plenty of nutrition intravenously.)

Ingrid's blood tests continue to show an elevated white blood cell count which indicates that she's fighting some kind of infection but the doctors can't seem to find what it is or where it is. All of her cultures have been "no growth". She's on two different antibiotics that should cover anything that she is fighting. She also got an ultrasound to make sure there wasn't an abscess under her surgery incision - we haven't heard the report on that yet.

Ingrid seems happy enough. She is awake and alert for short periods of time and asleep for long periods of time. Mommy held a peaceful baby for several hours this morning

While we want Ingrid to get better quickly we realize that she has to go at her own pace. For now we just have to wait patiently. But at least we can kiss her and hold her!

No News Is Good News

We had another relatively relaxing day today. Mommy got to hold Ingrid for a long time this morning. As you can see it is quite a process transferring not only a baby but the sensor wires, the IV and the OG tube (the tube down her throat into her stomach).


Several doctors looked at Ingrid's surgery incision because it had been draining some fluid. They all agreed that it was nothing serious, but Ingrid is on plenty of antibiotics just in case.

The most exciting news we got today is that if all goes well today and tonight we can start feeding her mama's milk tomorrow!

After Mommy & Daddy did her dressing change Ingrid was wide awake for a little while. We made eyes at her and she made eyes at us.

Hopefully tomorrow we can post a picture of Ingrid without any tubes or tape on her face! (The tube going into her mouth is the OG tube that drains excess fluid from her stomach. Because she isn't eating anything (all nutrition IV) her digestive system isn't really moving much. Hardly anything came out today so she should be ready for real food tomorrow!)

Off the Vent, Take 2

What a wonderful surprise when Mommy & Daddy arrived at the hospital this morning, our nurse and a respiratory therapist were preparing to extubate Ingrid!

Ingrid spent the entire day with no respiratory support whatsoever!

And her nurse removed her catheter. Fewer and fewer tubes. Yay!!



We had an excellent day today. Mommy and Daddy got to hold Ingrid for several hours. It was nice to have some quality bonding time.

There really isn't much other news to report but that, of course, is the best news.



At 3pm Mommy & Daddy changed Ingrid's dressing and then we wrapped her up snugly. We have a cd player in the room now so we could play music from home (we'll wean her off the Flower channel as we continue to wean her off the morphine.)

There is nothing like the feeling of gazing at this peaceful baby and watching her blood oxygen level stay between 98% and 100% with no support; her heart rate remain 160-170 bpm; and her respiration rate a peaceful 50-60 breaths per minute.

The Flying Nun

The nurses decided to try some swaddling and low-stimulation for Ingrid. This is how she looked when we arrived this morning. The lights were low, her arms were swaddled, she had a hood to keep out the light and an earmuff to keep out the noise. Too cute! (Kate said she reminded her of the Flying Nun.)

Ingrid is progressing. She is still on the ventilator but the amount of oxygen has been reduced throughout the day so that she is almost back down to 21%. She is also being weaned off her morphine and she has tolerated that well.

Mostly Ingrid slept today except for two times. The first was when we gave her a little sponge bath. It made her hair soft and fuzzy.

The second was when Mommy & Daddy changed the dressing on her O. We are working well as a team and are getting more confident.

At these times we also help check Ingrid's blood pressure & temperature. We change her diaper and give her lungs a massage with an electric device not unlike an electric toothbrush.






















Ingrid's primary nurse, Tracie, has had fun decorating for Ingrid. She made the lovely sign for Ingrid's bed and helped hang some toys for Ingrid to look at.

Daddy left at about 4pm (after the dressing change) but I think I can safely say that today was a good day! Ingrid is getting better and we hope that she will be off the ventilator tomorrow.

Rest Position

Ingrid is back on the ventilator as of 8:30 pm last night. She just needs a rest from her labored and shallow breathing so she can continue to recover from her surgery. This morning the doctors said that she may have a touch of pneumonia even though all of her cultures came back negative.

While it's not easy to see your baby on a breathing machine we were able to make her more comfortable which made this day more bearable.

We used bead-filled "Freddie the Frogs" to support Ingrid's head and her O so she could spend some time on her back rather than her side.

Mommy and Daddy took turns holding her hand and singing to her. This afternoon we worked together to change the dressing on Ingrid's O and then we got her comfortable so she could groove to her favorite music - the "Flower" channel - on the hospital tv. (It is a bit like being stuck in an elevator, but she loves it!)

The plan is to keep Ingrid on the ventilator for a few more days so she has a chance to really get well from her surgery and any little infection she may have. So, more waiting.

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!