Our Little Family: Update

June 14

Ethan decided (after asking my permission) that he needed to go back to work for a couple of days.  He has been gone since Wednesday and will be back tomorrow morning.  It has been rough not having him here to help, but I understand he needs to work.    

I went back to the Ronald McDonald house for dinner, was gone for an hour and I come back to find Hannah tubeless…again.  Yes, that’s right she pulled out her NG suction tube; surprise surprise.  The doctors decided to keep her tube out and see how her tummy does without it.  I hope we will be able to keep it out, she is much happier without it.

So, I always get comments on how much milk I have, it wasn’t until last night that I realized just how much.  Hannah’s nurse was chuckling and saying how she hoped we had a deep freezer at home because we were going to need some place to store all my milk.  I told her we had just bought one for this specific purpose (we had been looking for a good reason to buy one).  The nurse then told me that we would need several coolers to take home the milk we have in the freezer.  After teller her they only had half of it (the rest is being stored in the NICU freezer because of lack of space). I needed to get some of it home, now!  I realized we aren’t going to have enough room in the car for all the coolers it would take to bring all my milk home.  So I put the word out to my Fort Wayne friends that I needed help and I got a response almost immediately.  Some of my Fort Wayne friends were coming to Indy that night for the Mormon Tabernacle Choir concert!  So I sheepishly asked them if they could take a few coolers of milk back home with them and give it to Ethan to put it in my freezer.  I have such amazing friends, thank you soooooo much for doing this for us. These wonderful friends didn’t get back to Fort Wayne until 2 AM! Thank you again! Ethan then stayed up until 3 AM and organized the milk into the deep freeze. I have such an amazing husband.   

We can fit about 20 bottles/pink bin, we emptied 21 bins; that was all we could fit in the two coolers.

The two coolers we packed full of milk

 Here is just one of the coolers we dumped out onto the floor

It has only been a month and the freezer is already getting full, oh dear

Hannah is struggling to stay asleep at night and it is only getting worse. I wouldn’t sleep either if I was as hungry as she is (she is going on 4 days without any thing to eat).  I would get her to sleep and go and lay down. By the time I had lain down, she was screaming.  I was trying to figure out how to sleep standing up while bouncing Hannah when the sweet nurse came up with a better solution.  She told me to go to sleep and she would take Hannah out to the nurse’s station with her.  This was only possible because she was no longer on the suction NG (its hooked up to the wall).  She kept Hannah out there with her from 1:00-6:30 AM and let me sleep!  Each of the nurses took turns holding Hannah and bouncing her in a bouncy seat.  I am so grateful for the wiliness of these nurses to take care of my baby girl so I could get some sleep.

June 15

During rounds today the doctors decided we need to put Hannah’s suction NG back in.  Bummer. Originally they were going to keep it out and see how she did without it, but after some discussion they decided she needed it in for the remaining 3 days of being NPO (Nil Per Os or nothing by mouth).  They need to keep her bowels empty so they can continue to take a break and heal completely.  I was sad that we had to put it back in, but I know it makes her belly much more comfortable to have it sucking everything out (including air).

Ethan came back today! He showed up early afternoon. What a welcome sight. Not only is he seriously good looking he is also an extra set of hand to take care of baby Hannah. Ethan was so sweet and let me take a nap until it was time for dinner.

Hannah has calmed down a little this afternoon because she pooped!!!!!! I know that doesn’t seem very exciting and could be considered gross to the majority of the population, but the kid hasn’t pooped since Monday the 10^th! Her poop didn’t have any blood in it as it had on Monday.  This is a good indicator that her intestines are healing.

They placed her NG tube back in and got an x-ray to check placement as well as to see how things were looking down there. They said that it appears the NEC is gone and it looks like a lot of the air that was in her bowels (gas) seems to have dissipated. Now all we need is for her to be able to feed again. A baby with a full tummy = happy baby = happy mommy = happy daddy = happy family.

We had given Hannah a blessing the night we found out she had NEC, it is amazing to see how well she has recovered since then.  Her bowels almost immediately began to heal and now it appears she has gotten rid of it completely.  I am so grateful to know that my Heavenly Father is there for us and knows what Hannah is going through.  What a blessing it is to know that He can heal her and help us get through this challenging time in our lives.

Last night Hannah slept better than usual. She went to bed, in her mamaroo, around midnight and slept until 3. She went back to sleep at 3:45 and slept until almost 8 o’clock. Her vital signs look great.

June 16

During rounds this morning the doctors didn’t have much to say, which is a good thing. They talked about starting her feeds on Tuesday and how we will be starting her out really slowly to make sure her body handles the food.

Ethan is so good to me; he let me take a nap AGAIN while Hannah slept today. I think I was asleep for 3 hours!  I felt bad that on father’s day he let ME sleep, what a great hubby I have.  It is amazing how much better you feel when you are not running on 4 hours of sleep all the time!

June 17

Hannah was very cranky last night.  We were up most of the night with her.

Today marks Hannah’s 7^th day of being NPO.  The doctors decided to wait until tomorrow morning to start her on feedings.  They wanted to have a full staff of doctors on the unit to watch her to ensure everything goes as planned.

June 18

Last night was rough, Ethan stayed up with Hannah until 2:30 and then I took over at 4 when he started falling asleep while holding her. What a long night. Ethan spent most of the night holding Hannah while bouncing her. He is thinking of creating a workout video of how to stay fit with a newborn. Sadly this video will come with a disclaimer that these workouts can only be done in the dead of night while you are half asleep.

They took out Hannah’s suction NG today, but then immediately replaced it with a regular NG so we can start feeds!...well kind of start feeds.  She is starting at 3mL an hour and it runs over a continuous flow into her NG.  The doctors are saying they want to start very slow and will increase her feeds every 8-12 hours.  We started her at 11 AM and didn’t up the volume until 8 PM tonight.  She is now up to 6  mL and hour.

June 19

Another rough night, I stayed up until 2:30 and then Ethan took her until 4.

Rounds this morning were pretty uneventful, with the exception of the doctors being scared to touch Hannah.  She was sound asleep and they knew if they woke her up I might turn into a monster and rip their heads off.  They all chuckled and said they would come back and check on her later today.  They did say they will begin to increase her feeds every 6 hours now.  So as of 10:30 this morning she is up to 9 mL/hour. 

Hannah had a good rest of the day. She slept. She ate. She pooped. She cried. She fell back asleep. She ate some more…..etc….etc…What a boring life.

June 20

Last night was better (finally); I only had to stay up till 12:30 with Hannah.  She slept until 4 when Ethan took over.  The rest of the morning has been pretty successful.  Hannah is now up to 21 mL/hour and the doctors have indicated that at 2 PM today they will increase her feeds to 23 mL/hour which is where she was at before all of this happened. If she is tolerating the feeds they will start fortifying my breast milk with formula. We had a long discussion with both the pediatrician and the nutritionist about some other formula options which might be easier for her to digest.

Tomorrow morning they will take another X-Ray of Hannah’s gut to make sure all is looking like it should. If it is they are going to have speech meet with us tomorrow so we can try bottle feeding again. We hope and pray that we are on the home stretch and we can go home next week.   

Jack update

Jack had a blast at the family reunion in Alabama last week.  I was told he wore everyone out.  They adults would play tag with each other; one would take Jack for a few hours and then tag someone else “it” and then that person would take Jack for a few hours and so on.  Even with the adults taking turns everyone was pretty worn out by the end of the week, including Jack (surprisingly, that kid is like the energizer bunny). 

Jack still isn’t a fan of the deep water…or the horn on the boat.  He would cry every time they honked the horn or tried to take him in the water.  So, Jack spent most of his time playing in the shallow water where he could throw rocks and sticks in to make a splash.  I wish we could have been there to play too, but I am so glad Jack could go have fun.  It makes it a little easier to be away from him knowing how much fun he is having.  It is looking like Jack will stay and play in Alabama with Nana and Papa until we go home, which will hopefully be next week!

Jack on the boat at the lake

  

Playing with Nana

Playing in his tunnel made of pillows

The only picture I have of my two kiddos, Jack kissing baby sister goodbye before I went into the hospital.

My little man was in desperate need of a haircut, so Nana took him to get one.  What a stud!

 

Our Little Princess

June 9

Hannah had an extremely rough night last night. She couldn't sleep, she screamed for hours, and she threw up everything she ate. We were up with her for hours, working with her nurse frantically trying to bring her heart rate down. Around 3 am she finally wore herself out enough to fall asleep, but her heart was still racing. After a lot of discussion we figured out she was going through withdraw from her pain medication which she had been off of for almost 40 hours. They were able to give her a small dose around 4am. She has been calm ever since. It is not unusual for someone who has been on intense narcotic pain medication to go through withdrawals. What a rough and scary night. It looks like they will just have to wean the meds more slowly to avoid this again.

June 10

This morning Hannah decided to pull out her NG tube…again.  I didn’t mind too much because I was able to take some pictures of her cute face without all the tape and the tube up her nose.  I did feel bad though when they had to put it back in, she always throws a fit at the nurses.  It takes 2-3 nurses to put this tube back in Hannah because she is so strong.  They usually have 2 nurses holding her down so the 3^rd nurse putting the tube in.  Each time they do this (they have to replace her NG often because Hannah pulls them out) they comment on how strong and wiggly Hannah is. We love the fight in our girl.

Today started out very positive and upbeat. The rest of the day was a bit of an emotional roller coaster though.  This morning the doctors were all gung ho about getting us ready to go home at the end of this week. Yay!  We were making steps forward and making arrangements to do the parent care, the two day training (no nurses) we need before we go home, as well as the infant CPR course. However, throughout the day I noticed a reddish tint to Hannah’s stool which progresses and became more obvious that it was blood in her stool.

Around 2 o’clock the doctors and nurses started to get worried because of the bloody stool. They sent us downstairs to radiology to get a belly x-ray. They had told us that they just wanted to play it safe and ensure nothing was bleeding or out of the ordinary.

The pediatrician came and gave us the results fairly quickly.  She told us she saw no signs of “the big bad” thing they were looking for.  She said “I hope for a nice quite night for Hannah tonight” and ensured us they would keep an eye on her. 

She came back in, not even 10 minutes later, saying “I lied to you.  This is the one time I did not give my radiology disclaimer and I actually needed it.” We understood what she meant. From her initial assessment she had not noticed anything; however she had not received feedback from radiology. Radiology looked at the x-ray and they noticed something the pediatrician had missed…it was “the big bad” thing. 

That is why radiologist get paid to do what they do.  The radiologist did see two affected areas in her intestines.  The pediatrician apologized and ended by saying, “So much for a quite night for you guys.”  Ethan and I looked at each other and said, “so much for us going home this week”.

Hannah now has something called Necrotizing enterocolitis (NEC).  “A gastrointestinal disease that mostly affects premature infants, NEC involves infection and inflammation that causes destruction of the bowel or part of the bowel. Although it affects only 1 in 2,000 to 4,000 births, or between 1% and 5% of neonatal intensive care unit (NICU) admissions, NEC is the most common and serious gastrointestinal disorder among hospitalized preterm infants. The exact cause of NEC is unknown, but one theory is that the intestinal tissues of premature infants are weakened by too little oxygen or blood flow. So when feedings are started, the added stress of food moving through the intestine allows bacteria normally found in the intestine to invade and damage the wall of the intestinal tissues.”  Although Hannah was not premature she is at a higher risk of this disease because she has HLHS and doesn’t have the best blood flow. 

This is a VERY serious condition and if it progresses her bowels could die and/or rupture and they would then have to go in and intervene surgically.  If they were to rupture that would mean that everything that is in her bowels would then get into her bloodstream.  A scary statistic: “Necrotizing enterocolitis is a serious disease with a death rate approaching 25%.”  This percentage is drastically decreased with early, aggressive treatment.

It appears that we have caught it really early.  Usually babies have a bloated, hard belly by the time they diagnose this condition.  Hannah’s belly is still soft, and according to the x-ray only has two small areas affected.  So, hopefully we can stop this before it gets any worse. 

So, what are they doing for her?  They will stop feedings to let the bowels rest, nasogastric drainage (inserting a tube through the nasal passages down to the stomach to remove air and fluid from the stomach and intestine), IV fluids, antibiotics for infection, and frequent examinations and X-rays of the abdomen.  This treatment will continue for at least 7 days, longer if the condition worsens.

For the nasogastric drainage, it is a lot like the NG tubes they use to feed, but it is bigger and they can’t use it to feed.  This type of tube has several holes in the bottom, instead of just the one like a NG.  This allows suction from multiple places in her stomach so they can more successfully get out what is in her stomach.  This new tube will stay in until she can start eating again.  By having this intermittent suction in her belly it makes sure nothing enters the bowels, not even natural stomach juices.  This will ensure the complete bowel rest that is needed. I felt so bad that we had replaced her NG tube earlier today because they had to remove it so they could put the bigger tube in to suction out her belly.  Miss sass was not very happy with us.

We asked what caused this. As mentioned earlier, Hannah’s heart condition reduces the effectiveness of the blood flow throughout her body. Everyone’s intestines need an adequate supply of blood and oxygen to support proper and efficient digestion. Hannah starting getting fortified breast milk (breast milk with formula mixed in) which I believe was also a contributing factor. We’ll have to be careful as to how we fortify her breast milk moving forward.

The reason we fortified my breast milk was to give Hannah a chance to take, by mouth, the needed calories for the day.  So we decreased the volume we gave her and increased the calories by fortifying it.  If she could handle the lower volume, we could then take out the NG tube and give her everything by mouth. 

June 11 

They did a second belly x-ray this morning, which is quite the ordeal now that she is back on IVs.  The x-ray looked similar to yesterday, maybe with a little improvement.  The doctors are hopeful that we have stopped it from getting worse.

 

A week or so ago we were bragging about Hannah getting all of her IV lines out and now because of NEC we have to put some back in.  She had to get an IV put in her arm last night so they could start her on IV fluids and her antibiotics.  The doctors now want to give Hannah a PICC line so they can give her the nutrition she will need for the coming week as she won’t be able to eat anything for a week.  This will also allow them to run multiple antibiotics (she is currently on 3) at once and give them the central access they will need to treat this.  This afternoon they were able to fit Hannah in to place her PICC line.  Once again she went down to intervention radiology to have her PICC placed, to see the “wizard” as he was called today.  It is so much more comforting sending Hannah into a procedure when the entire hospital makes comments like “he is the best in the country” and “he is a wizard with tiny veins”.

Hannah, being the champ that she is, hasn’t really shown any signs of change.  She is a little fussier than normal because she is hungry, but not nearly as bad as I thought she was going to be.  She sleeps most of the day and shows no signs of discomfort or pain.  The only time she really throws a fit is when the nurses unswaddle her to check her vitals or whenever we take her out of her mamaroo (the best invention ever).  It is a mix between a swing and a bouncer; we often refer to it at her spaceship.  She loves the motion and loves to sleep in it, I keep trying to put her in her bed to sleep but she yells at me until I put her back.  All the nurses ask if we have one at home and when I say “no” they chuckle and say “well it looks like you will be buying one”.

Hannah in her mamaroo.  The cast on her arm is called a "no no", it is just a Velcro cast to keep her from bending her arm (where they placed the PICC line)

June 12

Hannah had another belly x-ray this morning in the hopes that things would look better.  IT DID!  Her x-ray showed NO signs of infection, YAY!  The doctors still want to continue her treatment until the 17^th to make absolutely sure they have gotten rid of this disease. 

The rest of the day is pretty uneventful.  We can’t really do anything to progress, it is a waiting game at this point until she is finished with her antibiotics. 

June 13

Hannah is one month old today!  I can’t even believe we have been here for an entire month.  It feels like we have been away from home for months, but it doesn’t feel like we have had Hannah for a whole month. 

Unfortunately, Hannah can't get all dressed up and cute for her one month birthday.  It is too difficult with all of her lines, at least she can still wear her zebra swaddle.

Jack update

Jack has gone home with nana to Alabama for the family reunion.  He is having a blast with all the attention he is getting and keeping everyone busy.  Here are some pictures of my little man.

A bucket and the hose, what little boy needs more than that.

Tina called this a "redneck swimming pool".  I love it!  Such a happy face.

Our Little Princess

Wow it has been forever since we have updated the world on baby Hannah. I apologize for the lack of updates. Life has been busy here and all my days are starting to run together.  Before I know it, I am two weeks behind on the blog and I am frantically trying to remember what happened on what day.

Since our last update, baby Hannah has continued to progress and it finally feels like we could actually take her home. If you remember from our last update they had just closed Hannah’s chest.

May 26-June 1

As this past week has rolled by, the doctors have started to wean Hannah off some of her medications. The doctors can’t just go cold turkey on the meds because she would go through major withdrawals. As we have said many times before, Hannah is already pretty sassy and the last thing we need is for her to be going through withdrawals. 

Hannah’s vital signs continue to improve to the point that they started taking out some her IV lines the middle of the week. They took out the IV she had in her foot which the surgeons used mainly during surgery. They removed her ART (arterial femoral) line which was used to monitor her blood pressure and pull her blood gases. This line look pretty gross prior to removal because during surgery they had placed some bandages and other medical adhesive on it that didn’t come off very easy. The nurses that came to change the bandage covering this line were worried it had become infected.  They watched it for a few days and decided to remove it.  After they removed this line it appeared nothing has been infected, but there was a lot of bruising in the area. 

A few days later they took out her two lines which fed directly into her heart. These lines measured the pressures in her right and left atriums. To pull these lines it is as simple as clipping the stiches holding the line in and pulling it out. They did this in our room. After they pulled these lines out they were able to pull out her chest tube which collected any excess drainage from her chest.

After they removed these lines they decided to put in a PICC (peripherally inserted central catheter). A PICC line is an IV which runs into one of the major arteries coming into the heart line.  The last time they tried to do this she was still in the NICU.  When they tried this procedure at her bedside they were unsuccessful because her veins were so small.  This time they took Hannah down stairs to intervention radiology and installed a PICC line so they could watch where they placed this line. The radiologist who performed this procedure was called “one of the best in the country” by several nurses, and he was successful at getting this line placed in a few short minutes.  They installed a double lumen PICC line, meaning there are two IV lines in one.  This allows them to run two different medications at the same time; which is helpful because not all medications are compatible. Currently she only has this line in so they can draw her blood once or twice a day without having to stick her every time. They are not actively using this line to give her medications but can use this line if they need to get meds into her system quickly. 

As you may or may not remember Hannah came back from surgery on a ventilator or a breathing tube. For the first week or so they didn’t make too many changes with her air supply. This week however they started to wean the flow of oxygen, forcing baby Hannah's body to pick up the slack and do some of the breathing. Hannah would have to initiate the breath and then the machine would help her do the rest. As the days ticked by they continued to wean her flow and % of oxygen she was receiving. Her vitals were still looking good. As Hannah started coming off her sedation she started to show some of that sass we all love. She would take hold of the breathing tube and give it a tug. I don’t think she could have actually extubated herself (taken the tube out) but that was everyone’s concern.  It also caused her parents to jump every time she would grab hold of it and start pulling. We would have to pry her hands away from the tube, which proved to be quite difficult; she has a really good grip.  The day finally came when she pulled hard enough that it moved just enough that it caused her oxygen saturation levels to drop way down.  She managed to do this three times in one day. The doctors made the decision soon thereafter that Hannah knew what was best and she was trying to tell us she was done with her ventilator.  So on May 28 they took her breathing tube out! 

Once off of her breathing tube they put her back on Vapotherm. She was on this type of oxygen supply while in the NICU. This machine provides a constant stream of high flow, high humidity, and heated air through a nasal cannula. A lot of babies with this heart condition enjoy this oxygen flow and many times it is difficult to get them fully off the oxygen supply before they go home. We will see how baby Hannah does. She seems to push back every time we try to get her off of her oxygen supply. I think we have an air junkie on our hands.  

Hannah with the ventilator 

Now that Hannah has been extubated she no longer needs to be so heavily sedated.  The sedation was mainly to keep her from yanking her ventilator out (and we saw how well that worked).  Another perk of her being off the vent is I can FINALLY hold my baby girl again.  This is the first time since her surgery that I am able to hold her!  I cried…again. 

 They let us take a picture before taping her Vapotherm nasal cannula down

Over the next couple of days they slowly weaned her off of the Vapotherm machine to the point where she could be placed on the normal nasal cannulas. If you don’t know what nasal cannulas look like just turn on any TV show that has someone in a hospital bed and I can almost assure you that they have some tube thing running into their nose. 

On the 30^th I was able to go to the children’s museum with Jack.  We got a family membership so we can go whenever we want and it has already paid for itself. Jack loves going to the children’s museum. Every time we pull into any parking garage Jack asks if we are going to see the robot. In the front entrance of the children's museum there is a full scale model of the Transformer Bumblebee.  Jack thinks it is pretty cool.  I didn’t get too many pictures, but here is a good one of my sweet boy.

Hannah has done some great things in the area of feeding. For the first week after surgery the only nourishment she received was some milky looking electrolytes called TPN (Total Prenatal Nutrition). Yum? It was “fed” through an IV. After the first week they started to give her a continuous flow of my breast milk through her feeding tube. They were only running 3 mL per hour or 1/10 of an ounce an hour. Just to give you an idea, at that rate it would take her 15 days to drink a 12 oz. can of pop or half a year to drink 1 gallon of water. Needless to say we won’t be putting Hannah on a diet anytime soon. They started this continuous drip to see how her little belly would handle mom’s milk after surgery. Hannah didn’t have any problem with it.

Over time they increased the flow of her continuous drip of my milk. When they were confident that she could handle the extra volume they started to give here larger quantities of milk over a shorter period of time. They also started spacing out her feedings so she would be on some semblance of a schedule. They continued to increase her feeds so that she was receiving 30 mL (1 oz.) over an hour.  I could have driven to Alabama in the same amount of time it would take her to drink a cup (8 oz.) of water. As she progressed, they decreased her feeding times down to where they could hook up a syringe to her feeding tube and just let gravity do the work. 

June 2

In the last two days I have had two different nurses ask me why Hannah is still in the ICU. When I tell them I don't know, they both told me that she doesn't need to be there anymore. This is so nice to hear, what a change from last week when they told me she was the sickest one in the ICU. Hopefully this means we will be transferred to the heart center tomorrow.

Something “exciting” happened today.  I was able to dress Hannah for the first time!  Up until this point she was only allowed to wear hair bows, mittens, and socks.  Okay, so it may not seem exciting to most, but I was thrilled.  

 Her very first outfit!

My little princess in her big girl bed.  They moved her out of the little isolette type bed and into a crib, she looks so tiny.

June 3

More exciting news, Hannah gets to leave the PICU (pediatric intensive care unit) today!!  We are now moving to the heart center (which is our last stop before going home). Not sure how much longer we are here, but she is making great progress. 

While we were waiting around to be transferred out of the PICU, one of the speech therapists gave us the opportunity to see if Hannah could bottle feed. So on day 22 of Hannah’s life she had her first bottle. Hannah instinctively latched on and drank an ounce without too much coaxing. She did very well for her first time.

Hannah left the PICU on her nasal cannulas and went up to the heart center on just a 1 liter of oxygen. They weaned her down to 1/16 of a liter of flow through her cannulas.  That doesn’t seem like much (because it isn’t), but she still wanted that tiny bit of flow. During the night her nurse came into the room to check on Hannah and her cannulas were sitting on top of her head, not in her nose like they should be. So they decided to try and leave the cannulas off for a couple of hours to see how she would do. After a while she started dropping her oxygen saturation levels and they put her back on the 1/16 of a liter. As we mentioned earlier, these babies love this flow of oxygen, no matter how insignificant or insubstantial it seems. 

June 4

Ethan and I were both very excited and hopeful to see how well baby Hannah had been doing with her attempts with bottle feeding when we arrived this morning.  We were also somewhat hoping that the doctors and nurses would give us some kind of an idea as to when we would be discharged. Come to find out that baby Hannah had not done very well throughout the night with her bottle feeds. I think she took 7 mL of her 75 mL during each feed.  (They give her the rest of the feed through her NG tube). We were equally unsuccessful through the day only getting only 9 -15 mL throughout the entire day. Hannah just doesn’t seem interested in the bottle. She will suck on it for a minute or two and then either falls asleep out of exhaustion or turns into her little sassy self and pushes it out of her mouth and refuses to take more. We kind of came to terms that we might be here for another week or two unless things really turn around. 

Hannah stayed on the small oxygen flow rate for most of the day and came off her oxygen completely this afternoon. YAY!!

Hannah also got her PICC line out today. They ended up not needing it for any medication and only drew her blood occasionally to check her vitals.

 

Nothing on her face! The nurses had to change her NG tube and before they put it back in we snapped a few pictures.  Unfortunately she doesn't like us messing with the tube, so she was a bit cranky.

 June 5

 

This was such a fun day for me.  I was able to take Jack to the zoo and spend the whole morning with just me and him.  I haven’t been able to have some special mommy and Jack time for quite a while; being on bed rest before having Hannah kind of put a damper on our outings. We mostly sat at home and played, which gets very boring after a few hours.  

I left my phone in the car so I didn’t get any pictures, but we had a blast.  I exerted myself way more than I should have considering I had a C-section 3 weeks ago, but it was so worth it.  I decided not to take the stroller, which was fine until we started to leave the zoo.  We were in the very back of the zoo and Jack hit his breaking point.  He started asking me “hold you?”.  I am not technically supposed to lift anything more than 10 lbs. for another 3 weeks.  I tried to explain this to my exhausted two year old who then fell to the ground and started to cry.  He said “I’m so tired, hold you, please mommy”.  How can you say no to that?! So I then hoisted him onto my shoulders and carried him out to the car.  He almost fell asleep on my shoulders, but we made it to the car before he was completely asleep.  We didn’t make it out of the parking lot though; I think he was asleep before I could finish strapping him into his car seat.  It was such a fun and terribly exhausting day (for both of us). 

Ethan was able to stay at the hospital with Hannah.  She went on her first walk in a stroller around the hospital.  Ethan was able to take her to get an echo cardiogram done.  Her echo looked great, everything looks like it should.

June 6

These last few days we did see some improvements with Hannah’s eating. Today she took 33 mL by mouth at her 3 PM feeding with the help of the speech therapist. She seemed much more interested in eating. She is now taking around 15-30 mL by mouth on average each feed.  She has had two feedings where she has taken 52 mL and 60 mL by mouth.  We are hoping that things improve steadily until we go home, whenever that is. 

Nana came up to the hospital to say goodbye to Hannah before leaving for Alabama.  

June 7

Jack and Tina left this morning for Alabama.  The family reunion is next week and lucky Jack gets to go and be spoiled by everyone.  We will miss him terribly, but hopefully we will be close to being out of the hospital by the time he comes home.  I am so glad Jack gets to go; hopefully it will help take his mind off the fact that mommy and daddy are STILL gone.

June 8

When we arrived at the hospital this morning the doctors were making their rounds.  They were discussing how to change Hannah's feeding plan.  They have decided to fortify my breast milk in order to increase the number of calories Hannah will get.  They do this by adding a small amount of formula to my milk.  This is VERY common for Norwood babies.  The hope is that we will not need to fortify it long term, but this allows them to give her a smaller volume of milk but she still gets the calories.  The reason behind this is the goal of 75 mLs every 3 hours is a very tall order.  She now has a goal of 62 mLs every 3 hours.  The hope is that if she can start consuming the 62 mLs by mouth they can take out her NG tube.  

A few pictures of our little princess today

Recap

So if you have been keeping track of everything you will remember that a week ago Hannah had 12 or so IV pumps being used now we have 0. All of her medicine can be given orally through her feeding tube.  She only has 4 now; aspirin, a multivitamin, a pulmonary dilator medication made by Viagra, and a medicine to help control her fluid levels in her body. She does not have any IV lines in, she is off of oxygen, is taking a bottle, and getting the rest of her feeds through her feeding tube. Incredible. It is crazy to think that only a little over two weeks ago Hannah was hooked up to every machine in the hospital to keep her alive and now isn’t hooked up to anything and looks like a beautiful healthy baby. Pretty neat to see the change.

So many of you are really wondering….what now? That is a great questions that we wish we knew the answer to as well. See the problem is Hannah is still driving the car and we leave when she leaves. The only reason we are still in the hospital is the fact that her feeding is still behind where a typically baby should be right now. I wonder why (sarcasm). They have told us that it could be another week to two weeks before we go home. We just have to play it by ear. 

Once we go home we have a ton of support and follow up that really ensures that we make it to surgery #2 which they say typically happens somewhere between 4-9 months of the baby's life. The scary part is this is when the babies are at their most fragile and unstable state. Most baby’s make it through the Norwood procedure, it is making to the next one is where the problems lie. They send us home with all kinds of monitoring equipment so we can keep a daily log of how things are progressing to see if we need to bring her back down to the hospital to have her checked out. We’ll provide a better update as to what home care looks like when we know more. 

Whew, that’s a lot of information.  Now that we are all caught up I think we will be able to do weekly updates on miss Hannah, that way it won’t be an information overload every time we update the blog.  I know I say it a lot, but thank you for the continued prays and encouragement.  It really does mean so much to us.