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.