Our Little Family: Coming Home!

October 19

In our last update Hannah was in the PICU a couple of days out from surgery.  We are still in the PICU. It took us a while to find the right “cocktail” of medicine to keep Hannah happy.  It was difficult to figure out which ones worked and which ones had no effect on her.  All of the medicines they have Hannah on this time are different from last time so it took a few days, but we finally got it sorted out.  It was a much different experience in the ICU this time than it was last time.  After her first surgery we were assigned all the nurses that had ample amounts of experience and this time I felt like we had the nurses that were fairly new.  I kept reminding them to take her milk out of the freezer and bring her pain meds. They were very sweet and nice but lacked the experience we were spoiled with last time.   

Not as swollen as last time, but still pretty puffy 

October 20

This morning they told us we will be transferring out of the ICU into the heart center.  However, an hour later they changed their mind.  They wanted Hannah to get off one of her medicines before we left the ICU.

Someone is so sleepy

October 21

This morning they actually transferred us to the heart center.  It feels like “home” in the heart center, we know all the nurses and they know us.  When we were transferred only one of Hannah’s pain medicines was transferred with us, Lortab.  The first thing the heart center nurse said to us when we got there was “I think she is in pain, let’s get her more medicine.  The ICU nurses are too stingy with her meds; Hannah has a pretty high tolerance to pain medicine.”  It is so nice to have a nurse that understands my little Hannah.  Her nurse had to call the nurse practitioner and get a special request for more medicines.  We had to continue this throughout the night and give her several doses of morphine just to get through the night. 

Hannah had a difficult night, despite her nurses being a little more generous with her pain medicine.  She was awake (screaming most of the time) from 2 AM until 6 AM, which means so was I.  I would get her back to sleep and lay down, but as soon as I started to fall asleep Hannah was awake again.  On top of her having a rough night one of Hannah’s IVs in her arm went bad, so we had to remove that, AND her central line that they have going directly into her heart wouldn’t draw blood anymore.  They usually like to have this central access so they can draw labs and see what levels are low, her line was still “good” but it wouldn’t let us draw any blood.  Her nurse was worried the doctor would want labs bad enough they would have line team come in tonight and stick her.  Thankfully the doctor had been involved enough with Hannah tonight to know they didn’t want to bother her any more than they had to.  So, they gave us the ok not to do labs tonight.  She came off her nasal cannula this morning, but they decided to put it back on her late this afternoon because she was screaming so much and kept dropping her oxygen levels. 

We were able to get Hannah to have three stinky diapers tonight!  I know that isn’t something you normally report as exciting; but when it’s been three days and we have given laxatives, stool softener, and a suppository all three days, it’s nice to finally see Hannah get some relief.  The diapers were so impressive we just wrapped the dirty diaper up in the blanket we changed her on and threw the whole blanket away.

October 22

This morning they decided to double Hannah’s Lortab dose in the hopes that this would help her be more comfortable.  Originally the plan was to remove Hannah’s drainage tubes in her chest today, but after last night she had too much volume coming out for them to feel comfortable removing them.  They decided they didn’t need more labs, so they gave the go ahead to take out her line in her chest.

Hannah seemed to be feeling better today so I asked if we could try just giving her Tylenol instead of the Lortab.  I think the Lortab is giving Hannah an upset tummy.  She immediately seemed happier.

Sorry it is sideways, I recorded it sideways on my phone so it wont rotate

October 23

Hannah had a rough day this morning; she didn’t want to eat and hadn’t had a stinky diaper in two days.  We have continued to give her laxatives, stool softeners, and a suppository.  I also decided to give her some apple juice to hopefully help things along.  It took a few hours, but finally we had some success.  Two stinky diapers later and it was like we had the old Hannah back, she was so happy and wanting to play.  She was on minimal amounts of Tylenol; she could have it every 4 hours but only needed it every 6-8 hours instead.  It’s so nice to see her happy again. 

October 24

Hannah got her chest tubes out today!!  She is so happy to have her chest tubes out; she is eating much better and is back to bending in half and holding her toes.  All the nurses that walked by peeked in Hannah's room and laughed saying “she is a whole new baby!”

She loves bouncing in her bouncy, she gave the nurses a good laugh.  

We had made plans with Tina and Doug to have Jack come home tomorrow because Tina needs to go back to work on Monday.  We keep hearing that there is a possibility we will go home this weekend, so hopefully that will happen.

October 25

The nurse practitioner came in Hannah’s room this morning and asked us “how would you feel about going home today?”  I laughed and told her sarcastically that I would be devastated.  Ethan’s response…”that is like asking someone if they want their double cheese burger with or without bacon; always with bacon!”  Come to find out the heart center was booked to capacity and the ICU wanted to transfer 6 new kiddos up to the heart center.  Hannah’s was the only room that was potentially coming available soon, so I think they wanted us to leave so they could have our room.  I am alright with being pushed out of the hospital after only seven days!

So they said as long as Hannah’s chest x-ray looked good we could go home.  So the rest of our day was spent taking Hannah to x-ray and waiting around for our discharge papers.  We finally left the hospital around 5 PM; we got home about the same time Jack, Tina and Doug did.  It was so good to be home and to have only been gone a week this time! 

We had given Hannah two doses of Lortab today because she was crying a bit more than usual (the second dose was on the way home in the car and all we had was her Lortab).  BIG MISTAKE!  I had already made the realization that Hannah didn’t like Lortab and it made her feel sick, I must have just had a major brain fart today. 

She cried all night long because the Lortab made her feel sick.  Sweet Tina stayed up with Hannah all night long and held her upright so she could be comfortable until the effects of Lortab wore off.  I kept getting up and trying to give Tina a break and her response was “no, you go to bed I can sleep on the way home.  I only get a weekend.”  It was so nice to have another mother in the house to help me help Hannah get through the night.  Hannah finally seemed to feel better around 2:30 in the morning.

October 26

Today has been a better day; Hannah is eating like a champion.  She is still a little cranky because she is having a hard time readjusting to sleeping in her crib with big brother running amuck throughout the house; overall though we are all happy to be home.  Thank you everyone for the prayers and support, Hannah made it through this surgery exceptionally well.  

I know this is random, but I forgot to mention this a few posts ago...Jack is potty trained, as of September 25!  Woo hoo, it only took 5 days to completely potty train him and he hasn't had an accident since.  He is two and a half and was ready before I was, but I am so glad to only have one kiddo in diapers.

Our Little Princess Update

Disclaimer: Ethan wrote this post :)

Yesterday Hannah went through her second surgery, the Hemi-Fontan procedure. This was originally scheduled to happen the Friday before Thanksgiving, but was moved up a month after she went in for her heart cauterization. They didn’t find anything wrong with her heart other than her heart had started to outgrow her shunt (not enough blood was being diverted to her lungs to get re-oxygenated).

They had us arrive the day before, Thursday, to go through all of the pre-operation checks. As was previously mentioned this was a long day full of waiting, answer the same set of questions 18 different times, and more waiting. We were thankful that Jack was kidnapped by my parents and taken to the Indianapolis Children Museum (the World’s largest children’s museum).  Then later down to Alabama for the week.

Thursday night we stayed at Ronald McDonald’s House. This house is such a huge blessing as it is right across the street from the hospital, costs next to nothings, has dinner every night; and is a nice, comfortable, and clean place to stay.

Hannah’s surgery was originally scheduled for 7:45 AM which would have meant that we would have to have been at the hospital at 5:30 in the morning. Yuck. Thankfully our surgeon, Doctor Brown would be helping out on another case first thing in the morning which pushed our arrival time at the hospital to 7:30 AM and her surgery to 9 AM. We arrived, got checked in and started the waiting game. We talked to a number of different people who asked the same questions over and over again. They must either think we keep lying to them and if they keep asking us the same questions over and over again we will eventually crack and tell them the truth….or they are just really inefficient and disseminating information throughout the organization so everyone that should know, knows what they need to know. Personally I enjoy being badgered for hours on end (sorry this blog is supposed to be about cute baby Hannah not a tirade of Ethan’s ranting).

Hannah scheduled surgery time was supposed to be at 9 AM but was move d to 9:30 because the first surgery of the morning started late which our surgeon was participating in. At 9:30 they came by and took Hannah back. Before surgery Hannah was very happy and took a nice little nap which helped keep mom and dad’s nerves at bay. Before her first surgery Hannah screamed all the way back which did not help mom and dad’s mood any. The family nurse who provides hourly updates to the families told us that she was having a fun time before surgery playing peek-a-boo with the anesthesiologist.

Waiting in the family waiting room always brings the gravity of Hannah’s surgery into perspective. We arrived at 9:30 AM to a full waiting area (20-30 families). By the time we left there was only one other family and they had arrived well after we did. As the day progressed Hannah’s surgery went as planned. They finally came and told us around 4 o’clock that it was our turn to go talk with her surgeon.  We spoke with Dr. Brown, a man a few words. He said that all went as planned and said that things looked good. He did say that her structures looked small which makes sense as she is only 5 months old and they typically do surgery when they are 6-9 months old.

We then had the awesome privilege of waiting in the PICU (pediatric intensive care unit) waiting room for a long long time. They told us that we would be able to go back to see Hannah an hour after we speaking with Dr. Brown. This is the time when they get Hannah all settled into her new room.  The hour came and went and we were still waiting. An hour and a half passed and we started to get worried. Right as Kelli was ready to storm the PICU doors a nurse came out and told us that Hannah had started waking up after surgery and they had decided to extubated her (take her off the ventilator).  They wanted us to wait a bit longer while they settled her in again and made sure she wouldn’t need to go back on the ventilator.  Around 8 o’ clock (another hour and a half later) they FINALLY came to get us to see Hannah. It took them so long because after they had extubated her she was still in a lot of pain and they were busy trying to figure out the right balance of pain meds to give her. It was nerve racking to wait for 3 hours not knowing what the holdup was. Your mind really starts to mess with you after the first hour or so.  You begin to think the worst has happened and they are busy trying to keep Hannah alive.  Thankfully this was not the case.  After being away from our little princess for almost 11 hours we were finally able to go back and see Hannah. She was resting but you could tell that she still wasn’t very comfortable. While we were there they gave her another dose of medicated which seemed to help a lot.

Kelli and I were also both about to crash; we hadn’t had anything to eat since lunch because we expected that we would have been able to see Hannah around 6 o’clock. We decided we needed to leave for the night and go sleep at the Ronald McDonald house.  Kelli cried because she felt like she needed to be at the hospital with Hannah, which just validated in my mind that I needed to take her to Ron Dons to sleep.  The nurse stays in Hannah’s room (Hannah is her only patient) and would be checking Hannah’s vitals every hour so there’s not much we can do to help tonight.  We agreed that we will all be much better use tomorrow if we get at least one full night of sleep.   

This morning we arrived at the hospital early in the morning to find Hannah looking better, but still very restless. They are still working to get her pain meds dialed in. They are surprised at how strong she is. They nurse had to tie her arms down so she would stop yanking on all of her lines.  Kelli made the suggestion that we swaddle her instead (Hannah wont sleep at home unless she is swaddled).  This is working somewhat, she still gets out of her swaddle but it’s better than having her tied down.  In the short time we have been here she has already successfully pulled her nasal cannulas out twice. Shortly thereafter they gave her some more sedation medication.

The doctors stopped by this morning when they were doing their rounds. They said she is doing well and we would start feeding her clear liquids this morning. If she tolerated those feeds they would start feeding her breast milk again. They are going to be starting her on a continuous drip of IV Ibuprofen today to hopefully keep her comfortable.  Once she starts tolerating her milk again we can start her on some different, oral medications.  It looks like we will have a pretty uneventful day, our main goal is to keep our little angel happy and content. 

Day of Surgery

Waiting for our turn in the OR.  She is as happy as can be, despite the fact that she hasn't been able to eat.

Sorry the video is sideways

Our Little Family: Update

It’s no secret that I have not been good at posting updates lately…or at all.  I have found that since we have been home it is very difficult to find the time.  I have been dreading this update because it has been so long since we have posted anything and it is going to be a big post.  I apologize for not keeping up with our Hannah updates. 

In our last post we were still in the hospital, I think most everyone knows we are home now!  But let me tell you about the events that lead to us coming home. 

The first week in July we finished our parent care and readied ourselves to go home.  We were looking forward to going home and expected it to happen fairly quickly after completing our parent care.  However, Hannah had several bad days in a row; she wasn’t taking in the volumes she should be.  They kept telling us “we will keep you another day so we can make sure she can do this”.  After hearing “just one more day” three days in a row we decided it wasn’t going to happen.  We were frustrated and tired of being in the hospital.  Ethan had to leave the night of July 4^th to be back at work on the 5^th, he was going to go back to work for good.  We decided together that he had been gone from work for too long and needed to return.

 

It was such an emotional week for me thinking everyday could be “the day” and everyday being let down.  I began feeling like it was never going to happen.  On top of that emotion I knew my time with Ethan’s support in the hospital was coming to an end.  After I had a meltdown in front of one of the nurses Ethan and I decided it would be best for me to go home for the weekend.  Ethan and I left the night of July 4^th and drove home. 

I called Hannah’s nurse the next morning to check on my baby girl expecting to hear she had done poorly overnight.  I was surprised when her nurse reported that the doctor was thinking about sending her home today.  The nurse called me back after the doctors did their rounds for the day and they had made the decision to send Hannah home!  I was stunned; of course, the one time during this whole process that I go home they decide to discharge her.  If I would have known that was all it took to get Hannah to come home I would have left much sooner. ;)

So our weekend was cut short, not that we were complaining.  I called Ethan and work and told him he had to take one more day off work so we could go get our little princess.  We drove back that afternoon and after 54 days in the hospital we were able to take our sweet little girl home!  The strangest part of being discharged was when they unhooked her from all her monitors.  I could walk around the room with her and not worry about yanking her “leash”; I felt like running through the hospital saying “look what I can do!”

We are leaving!

The day after coming home with Hannah, Tina brought Jack home!  I was so excited to have both my kids in my arms in my own home, what a blessing.  Even better, it was just in time for my birthday.

I couldn't have asked for a better birthday present!

Coming home was a BIG adjustment, and in different ways than I thought.  I thought it was going to be hard dealing with Hannah’s medical care.  This was a piece of cake after spending so much time in the hospital (and I only have to check her sats once a day).  The most difficult part was I felt like I had to learn how to be a mommy all over again.  I took care of Hannah the whole time in the hospital, but for some reason it was different now that we were home.  I hadn’t learned her cries yet and I was now in charge of her schedule.  It was difficult to adjust to this all the while trying to figure out how to be a mommy of two.  Despite the difficulty, I wouldn’t have it any other way.  I love having my family home!

 Best buddies!

 Hannah's first real bath (she only got sponge baths at the hospital)

 Jack's first time holding Hannah.  He giggled the entire time, even when she started crying

Hannah’s mamaroo came in the mail!!

We were home for a week and Hannah was struggling to adjust.  She still wasn’t eating like she should be.  I took both kids to Indy for Hannah’s first routine checkup and because her volumes were so low they decided to admit her for dehydration.  What a nightmare, BOTH kids with me in a tiny hospital room.  Thankfully the nurses are so sweet and willing to help.  They took over Hannah so I could take Jack out during the day so we all wouldn’t go stir crazy. 

The car ride to Indy

I told him not to bite his fingernails...so he did this instead

 And this was Hannah's reaction to being in the car 

 Playing at the children's museum

We were only in the hospital for 3 days this time, but it was the longest three days EVER.  Jack is so busy and I don’t realize it until I have to try and contain him in a hospital room. 

Other than our 3 day stay in the hospital, Hannah did not get admitted after we officially came home. We came close a few times because the doctors were worried that she was getting dehydrated.  Hannah still struggled to eat, but progressively improved.  The doctors said that as long as she stayed hydrated and gained weight they wouldn’t worry about her volume so much.  Despite the fact that Hannah has never taken in the volumes she “should” she gained weight really well. 

We would go to Indy every other week for our routine checkups.  Every appointment the doctors would say things like “she looks so good”, “She is doing amazing”, “She is so strong”.  Hannah is at risk to be developmentally delayed, but she shows no signs of delays at all.  She is such a rock star, so proud of my little girl.

 We blessed Hannah on August 4

 She has learned how to "escape" from her swaddle

 And she thinks its funny

 

I couldn't resist!

 We tried rice cereal for the first time

In one of her checkups we decided to schedule her second surgery for November 22.  This way we can do it over thanksgiving and Jack could go to Alabama and play with Nana and Papa and Ethan could be at the hospital with me.  If we do it over thanksgiving everyone could take off minimal amounts of work. 

October 8

Hannah had her heart catheterization today.  This is where they place a catheter in her groin and feed it into her heart.  They then measure the pressures in her heart and check the different areas to see if anything looks too small and needs to be ballooned.  This is a standard procedure they do before the second surgery to see if she could even survive the second surgery. 

A cathe is usually pretty taxing on Norwoods.  They are put under with anesthesia and put on a ventilator.  Our little Hannah didn’t like waking up and was very cranky.  She came back to her room very fussy and on oxygen.  The doctor sent the nurse to come and get me from the waiting room because he had to stay and hold cranky Hannah.  She was only on oxygen for about five minutes; she ripped her nasal cannula out and threw it on the floor.  They decided to keep us overnight because she was still very fussy.  She wouldn’t sleep or eat anything, she just wanted some mommy snuggles while she whined.  Four hours after her procedure I finally got her to sleep. 

Her cathe went really well, everything looked great.  However, the doctor said she has outgrown her shunt and we need to move up her surgery.  The doctor came in and told me they have moved up her surgery and it will be NEXT WEEK, October 18^th.  YIKES, I nearly had a heart attack.  I thought I still had a month and a half to prepare, but I should know by now that I shouldn’t ever try and plan anything when it comes to Miss Hannah.  Everything has always been up in the air with her and we have had to look at things one day at a time.

We were discharged the day after her cathe, but almost had to go back to the hospital because Hannah wouldn’t eat anything.  Every time I offered her the bottle she would scream and throw herself around trying to get away from the bottle.  After talking extensively with her nurse practitioner we decided it was the lingering effects of the anesthesia.  Needless to say I am not a fan of Hannah and anesthesia. 

October 17

We drove down to Indy today for Hannah’s pre-op.  Nana and Papa met us in Indy to pick up Jack.  I am so spoiled to have such great in-laws.  Tina is taking a week off work so she can watch Jack for us.  We made the mistake of telling Jack a few days ago that he was going to go play at Nana’s house.  He came in my room the other morning saying “go to Nana’s house?!” over and over again.  I told him, “nope, not today”.  He saw that I was feeding Hannah. Being the clever boy he is put two and two together and said, “we take Hannah with us” and went to go pick her up. (If we can’t go because you are feeding Hannah we’ll just take her with us.)  What a funny boy.  He has come in every morning since then asking if we were going to Nana’s today.

Before leaving Indy today Nana and Papa took Jack to the children’s museum. 

 He loves the “robot” and refers to the children’s museum as “go see robot?”

We were at the hospital for 8 hours today (4 of those hours were spent waiting to talk to her surgeon) getting an echo, chest xray, and labs done in preparation for tomorrow.  This was all outpatient stuff so Hannah doesn’t have a room at the hospital yet.  Thankfully we got into the Ronald McDonald house again, so we will be staying there tonight.   

At the beginning of this post we mentioned that we hadn’t updated this post since the last time we were in the hospital. Well guess what we are back in the hospital. It is almost like we never left. It is pretty sad when the cleaning ladies smile and wave when you pass because they know who we are. We had a half dozen people come in and say hi while we were in the heart center. Hannah is so loved here!  Is it sad to call this our home away from home? They love us here and we love them. They are life savers in more way than one.

Surgery is scheduled for 10 AM tomorrow morning.  We ask that you please add little Hannah to your prayers.  Even though recovery for this surgery easier (because she is older and should tolerate it better), it is still open heart surgery and just as invasive and intricate.  We need as many prayers as we can get.  Thank you for all the support, we feel truly blessed.

Our Little Family

June 24

Ethan left again last night because he had to be at work this morning at 5AM.  He is planning on being gone until he is needed back here for parent care (the two day training we have to do before going home).  We are still hopeful that we will be doing that this week, but it all depends on Miss Hannah.

Hannah’s nurse decided she would feed her all night long for me so I could sleep.  She took 33-35 mL by mouth for each feed.  When the team of doctors came in this morning they said they were “shocked at Hannah’s numbers”.  She continues to impress them. We are hoping that she can get into the 60-65 mL range so they can take out her feeding tube and let her trial feed without it. So far we have seen good results as she takes a little more each feed. 

We are still using the IV pump to run the remainder of her feed through her NG tube after she takes what she can by mouth.

We have a third year med student working with our team of doctors. She approached me today and asked if she could bring a group of her peers by to see Hannah.  It struck me today how (medically) special my little girl is. There is such a small population of people with hypoplastic left heart disease, and these students only get a few chances to have hands on experience with one.  The students wanted to listen to Hannah’s heart because she has such a special heart and it sounds different than a normal heart. When you listen to her heart you hear a whooshing sound which is the sound of the blooding running through her shunt. Once this shunt is removed she will no longer “whoosh”. They wanted to hear what a Norwood heart sounded like.   I love that I can give these students an opportunity to learn through my daughter.

Jack is learning more and more every day, I cannot believe how fast he is growing up.  One thing his Nana has really been working on with him is getting him to stop biting his nails, his fingers are always in his mouth and his poor finger nails are practically nonexistent.  She has clearly told him frequently to stop biting his nails because I got a text today with a “quote of the day” from Jack: “Nana stop eating your nails!” (said with authority).  What a funny boy, well this is one way to get Ethan to stop biting his nails…have Jack call him out on it.  Maybe once we get home they can call each other out and hopefully they will both stop.

Jack’s second “quote of the day” was after lunch.  Nana asked him if he wanted more to eat and his reply: “No, it’s time to go night night.”  Well it’s good to know Jack isn’t giving Nana too hard of a time with naps. 

June 25

Hannah continues to bottle feed what she can and then we NG (feeding tube) the rest of it.  Her numbers are about the same, about 30-40 mL by mouth each feed.  She did attempt to rip out her NG tube again today.  She got it halfway out before I was able to pin her arms down.  Her nurse was in the room and was able to push it back down into her belly without us having to remove the tube the rest of the way. 

After the doctors made their rounds today they were bummed we put her tube back in.  They said because she had pulled it out they would have considered letting her trial everything by mouth.  However, because we had already put it back in they decided to keep it in a few more days until she can get her numbers up higher.

Jack is having so much fun in Alabama; he loves playing with his uncle Craig and won’t leave his side.  Whenever we are skyping I often hear “where is my Craig?”  I think he will be so sad to come home, in Alabama he gets Nana, Papa, AND Craig.  Home is going to seem so boring to him now. 

Two nights ago we were skyping and Papa and Craig both had to leave to go somewhere and Jack was so distraught.  First papa left, leaving Jack (sobbing) with Nana, and then once he calmed down he ran down the hallway saying “Craig? Craig?”  When he couldn’t find him he fell to the ground crying because both Papa and Craig were gone.  It was so sad, but I couldn’t help but chuckle. 

Twinners

Flying with Uncle Craig (sorry it’s not the clearest picture)

June 26

This morning I could only get Hannah to eat 5 mL with her bottle.  She refused any more and would cry every time I tried.  So we hooked her up to the IV pump to finish her feed through her NG tube.  About 3 minutes into the NG feeding however she woke up screaming.  I look over at Hannah and she has the NG tube IN HER HAND!  Yes that’s right; she ripped out her NG tube IN HER SLEEP (while wearing mittens)!  Man she must really want it out.  The reason she woke up screaming is she had ripped all the tape and tegaderm (transparent dressing) off her face.  We usually tape the NG to her face pretty good so she can’t rip it out, but the persistent little stinker got it all off at once and in her sleep!  We have found that the one thing that makes Hannah mad above everything else is when we have to remove any kind of dressing or tape.  She will scream so loud, even if it is just removing a small band aide. 

Right as she started screaming I shriek, jumped up, and kinked off the NG line so we weren’t dripping milk all over the floor.  I now have my hands full and can’t move too far from the IV pump because I had to kink off the line with one hand and catch all the milk that is dripping below where I kinked it with my other hand.  Of course, Ethan is still in Fort Wayne so I reached for the nurse call light with all I had left...my foot.  What a sight that would have been: me standing on one leg pushing the call light with my toes, trying to catch all the milk all the while shushing Hannah trying to calm her down.

The nurse came in laughing at what a stinker Hannah is and we decided to keep her tube out this time until after the doctors made their rounds. 

During rounds they decided to let us try to give Hannah everything by mouth today!  The means we get to keep the NG out (for now).  Yay, this means we are one step closer to going home.  If she can take almost everything by mouth they will keep the NG tube out for good. 

So nice to see her face without any tape

Over the next few hours we only gave Hannah a bottle to see how much she would eat.  The first two feeds were 40 mL and were only two hours apart.  The pediatrician had told me that she needed to take 45 mL every three hours in order to just stay hydrated.  This is the bare minimum they wanted her to drink, but she was on an upward trend. 

After only two feedings however, the pediatrician came in to talk to me.  I was so proud to tell her how well Hannah was doing.  The pediatrician looked at me and shook her head, immediately wiping the grin off my face.  She told me Hannah wasn’t doing well enough to prove to her that they can keep the tube out.  I was speechless; I had thought that because she was meeting the minimum requirement and was continuing to improve they would keep giving her time. 

After the pediatrician had left I had found my voice again.  Everything had registered in my brain and now I was just mad.  Because Ethan wasn’t here, our poor nurse got an earful.  I just started to vent to him.  I felt like they weren’t giving Hannah enough time to prove that she can do it, it had only been two feeds since the tube came out.  She is so much happier with it out and she is taking enough to stay hydrated so why on earth were they going to put it back in already.  I told Brandon, Hannah’s nurse today, that I am not going to let them put the tube back in just yet.  Luckily, he was on my side and agreed that they needed to give her more time. 

The pediatrician is now mad at me.  She doesn’t want to give Hannah more time and doesn’t think she can do it, but she reluctantly agreed to give her more time.  Brandon talked to her and got her to agree that as long as she is staying hydrated tonight we won’t put the tube back in.

The rest of the day I was so determined to prove the pediatrician wrong…and so was Hannah!  She continues to increase the amount she is drinking; she takes 40-50 mL every TWO hours.  I am so glad that I stood up for Hannah (despite being timid about it).  If she keeps this up we should be on track to go home soon.

We obviously aren’t going home this week like we thought, but that is alright because the end is still in sight.  We had thought it would be this week, but we also though we would be going home with a G tube (a feeding tube that comes directly out of her stomach and requires surgery).  At this point it is looking like we may go home with no tube at all.  We know they won’t send a Norwood home on a Friday just in case something happens after we get home they want us to be able to get to a doctor and they are all closed over the weekend.

Jack went to the Mcwane Center with Nana

June 27

This morning I was approached by another third year med student asking to bring in another group of students to listen to Miss Hannah’s heart.  I love any opportunity I have to show off my sweet little angel. 

Hannah is doing better with feeds she has had two feeds today that were pretty high: 55ml and then 3 hours later 60ml.  When we weighed her tonight however she didn’t gain any weight (she needs to gain 30 grams every day).  Because of this they want to put off doing parent care until next week (instead of over the weekend).  If she isn’t gaining weight then she isn’t getting enough calories through her feeds and they won’t let us go home.

Jack’s quote of the day: He was riding in the car with Uncle Craig and Craig was saying names of objects and Jack was repeating everything he said.  “dirt, dirt.  Sky, sky.  Grass, grass.”  Then Craig says “love” and Jack says “Nana”.  Nana just loved that one!  Too cute.

Jack playing outside

I got a text message from Tina this afternoon and asked if we could skype because Jack had to tell me something.  I get on skype and Jack says “I went stinky in the toilet!” I had to have him repeat it because I couldn’t believe my ears.  He actually went stinky in the toilet with very minimal coaxing.  I am so excited, maybe by the time I get him back he will be on the road to potty training.

June 28

Hannah is doing so well eating.  Today she had three feedings where she met her 70 mL goal.  The rest of the feeds were in the 60s, the doctors are very pleased with her progress.  She is also gaining weight which shows them that she is ready to go home.

The doctors have discussed us starting our parent care soon.  They are saying we will probably do parent care on Monday and Tuesday and then they discharge us on Wednesday. 

June 29

Hannah is doing phenomenally with her feedings.  The lowest she has taken today is 60 mL, we are so excited. 

Hannah’s nurse came in the room tonight to change the placement of her pulse oximeter and put new leads on (the stickers that go on her chest to hook her up to the monitor).  When she walked in I was already doing it because I had noticed they weren’t picking up.  I told her how much she had taken by bottle and how much her most recent diaper weighed.  The nurse chuckled and said “you make my job way too easy”.  I was a little perplexed and asked if I was doing stuff I shouldn’t be doing and she told me it was great that I knew how to do all that I was doing.  It will make parent care so simple for us.  I guess that’s one of the perks to being in the hospital for so long, I am comfortable enough to do the menial things that the nurses have to do.

Jack went stinky in the potty again, woot woot.  I didn’t think he would do it again, maybe this means he is ready to potty train.

June 30

Today has been a bit difficult for Hannah for some reason.  She only met her 70 mL goal a few times.  I am worried the doctors are going to push back our discharge date…again.  The nurse didn’t seem to think anything was wrong with Hannah; she just doesn’t want to eat as much.  We will see, hopefully everything is still ok.

Hannah had her hearing test tonight and passed without problems.  Getting her all hooked up is what took the longest.  It took a good 20 minutes to get her all hooked up to the hearing machine, and then we had to calm her down and put her to sleep.  Once she was asleep we laid her in her bed and not even a minute later she was done.  I guess I was expecting the actual testing part to take the longest.

Jack asked to go stinky in the toilet in the middle of church today.  Nana didn’t think he really needed to go so she waited, but after he asked a second time she took him and voila he went in the potty for a third time! 

July 1

Well it has already been a busy morning.  They have taken Hannah’s PICC line out, yay!  They have also started her car seat study.  We are in the middle of this right now; what they do is they hook her up to more monitors and have her sit in the car seat for 2 hours (the amount of time it will take us to get home) and then have her out of the car seat for 2 hours.  They want to watch and make sure she isn’t in distress while in the car seat; just another necessary step before going home.

Speaking of going home we start parent care TONIGHT!  We have 48 hours of parent care and then we go home!!!  For parent care we are completely in charge of Hannah for those two days, this includes medicine, checking her vitals, and other “normal” baby things (diapers, feeding).  We have been doing most of this the past few months anyway, we even had a doctor ask if we could skip parent care because we already do the things needed to “qualify” us to go home, but it is a formality so we have to.

We also had another group of med students ask to come in and listen to Hannah’s heart today.  When they all got here, she was already in the process of her car seat study so she was hooked up to another monitor.  The med student lifted Hannah’s shirt to listen to her heart and accidently pulled off one of the leads on her chest.  The machine went berserk, it started beeping so loud.  The poor med student jumped back away from Hannah so quickly saying “oh no, what did I do?”  I just chuckled and told him what happened (can you tell we have been here too long).  I replaced the lead and waited for it to stop beeping.  It did stop, but they had already started pushing buttons.  This just made the machine mad, and the already unbelievably loud beep got even louder.  This continued for probably close to two minutes. By the end, our ears were ringing and I am sure some of the other patients thought something serious had happened in our room.  

**************

So, this afternoon has been just as busy as our morning.  Our nurse decided today that we need to let Hannah only eat for 30 minutes from start to finish.  We had been previously instructed to feed her for however long it took until she was done.  This throws a wrench in our plans because she will not eat more than about 50 mL in 30 minutes.  So now the doctors and dietician are debating on what to do next.  The dietician wants to put in a G tube so we can make sure Hannah gets all the calories she needs to grow.  The doctor wants to keep the tube out and send us home with Hannah only taking 50 mL every 3 hours.  He thinks she will continue to improve and will eventually catch up.  So, for now we are continuing with parent care tonight just in case they decide to send us home this week.  I need to stop trying to make plans because every time I do, it backfires and we are here longer.  I should be good at rolling with the punches by now, given how “unplanned” my whole delivery with Hannah was, but I’m not.  Maybe this is Heavenly Fathers way of teaching me patience. 

A big congratulations to my sister and brother in law who signed the adoption papers today for their newest addition to the Barclay clan.  Welcome to the family baby Barclay and congrats Scott and Steph, we can’t wait to meet him (who knows when that will be).

My sister Stephanie and her beautiful baby boy

July 2

Hannah did unbelievably well last night.  We only offered her 60 mL for two of her feeds and with both of those feeds we had to get the additional 10 mL after she demolished the 60.  So, overnight she had two feeds of 70 mL (under her 30 minute limit, one that she finished in 13 minutes) and one feed at 65 mL.  It looks like Hannah is a champ and we are scheduled to go home Thursday…do I dare say that out loud.  Hopefully this time will be for real. 

Parent care is going well; it isn’t really anything different than what we have been doing.  The only difference now is we are the ones that have to chart everything.  

Our Little Family

June 21

Hannah had another KUB (belly x-ray) this morning, everything looks perfect; no signs of NEC.  She also had an echo (heart ultrasound) this morning.  It had been a while since she had one and they just wanted to make sure everything still looked good.  Her heart looks pretty good. Her aorta (which had been grafted and readjusted during surgery) looked like it could have been narrowing. The doctors told us they would keep an eye on this but didn’t seem concerned as her vital signs have look really good for someone who had undergone her surgery.

We have started Hannah on bottle feeds again!  She is struggling a little more than I would have hoped.  She has to relearn how to eat all over again; I was hoping she would remember how, and take off as soon as the bottle touched her mouth.  Unfortunately, she has to build up those muscles all over again and relearn the motions. 

June 22

Hannah is pretty consistently taking 15 mL (1/2 oz) by bottle, each feed.  We then give her the rest of the milk through her NG that runs for two hours.  We are hoping to condense this time to the point where we can go back to gravity feeds.

So here is our funny quote of the day: “It’s a good thing we make cute kids, they may only have half a heart but they sure are cute!”  We figure you need to be able to laugh about it.

June 23

Last night Hannah took an average of 15 mL by mouth each feed.  She is getting 70 mL each feed, so this small amount seems so insignificant.  But according to the speech therapist, this small amount is still a major accomplishment.  Just the fact that she can suck, swallow, and breathe at the same time is a big step.

For her noon feed today however, she took 38 mL by mouth!  Such a big improvement, let’s hope she can keep this up.

 Our little girl is feeling so much better

Hannah with her Wubbanub, or as Jack calls it, Hannah’s frog bacon (Jack calls a binky a bacon).  The frog is attached to the binky to hold it in her mouth better, best $10.99 I have ever spent.

Jack update

Jack is still having a blast in Alabama; I am really struggling to be away from him though.  He probably doesn’t even care that we are gone; he gets to play with papa, nana, and Uncle Craig all day long.  I miss him so much; Skyping everyday just doesn’t cut it.  To top it all off he has been sick this past week and it kills me that I can’t be there to snuggle him.  Although, it’s probably a good thing I can’t snuggle him right now though because that would mean Hannah would probably get sick too, and that would be really bad.

Jack playing with Uncle Craig

If everything goes as planned, we will be coming home THIS WEEK!!!!