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