Sorry this took so long to post. It has been quite the whirlwind since we made it home. Prior to coming home we had decided to cancel our internet at the house to save some $$$ and see if we could run off a wireless connection, needless to say it has not been the greatest. So I was able to get some connection long enough to write everyone. SO where to begin.....this is going to be long...
We were able to leave the hospital on Monday the 7th around 2pm. It took forever for us to make sure we were able to get everything in the car (3 full vehicles!!), plus trying to manuever her in the stroller and to the car and in, go through the paperwork, say our goodbyes to our Cardiac Crew, etc. But we made it. Thank goodness for Pawpaw and Aunt Me to be there for us! About 1/4 in to the trip Jenna git sick and vomited all over the car (despite getting nausea medicine prior to departure), so this set us back a little bit. But we finally made it to WV around 6pm. I came home to a decorated house for welcoming us home, balloons, cake, signs, etc. It was so great! Thanks BFF Wendi! Plus my house was already decorated for Christmas, at the request of Justin before I got home, it was great. The nursing group and supply group were waiting for us to arrive, so I had to go through all kinds of things with them, making sure we had everything, meeting our day nurse. Our night nurse was to arrive later, but she had a family illness, so we were on our own the first night. Lord helped us in a big way. Finally around 11 we got babgirl to bed, way a regiman to go through now. Justin took the first shift til around 4a and I took the remainder of the night until she woke up. Nightshift is not for me. So, it was great when our day nurse started, she adjusted really well to Jenna and Jenna as well. They had come to really enjoy each other. Jenna even lets her rock her, and lets me leave the house to go run errands! It is great too, because she is able to go to doctors appts with me when Justin has to work. So she has been with us now for about 3 weeks and things are going great. Nightshift on the other hand is a different story. The first night nurse we had did not work out well, she was a chain smoker and needed her breaks through the night, which was not going to work because we did not want her leaving Jenna asleep so she could step outside. Plus she did not seem very comfortable with Jenna status (cardiac) and seemed that she would have trouble adjusting. The first night Jenna threw a curve ball on her, and decided to desat to around 48. She has turned and pulled her trach, causing herself to cough and clamp down~naturally causing her sats to drop. Well everyone knows that Jenna drops fast in her sats, but takes a few minutes to come up. I was half asleep when this happened, woke up to the nurse banging on my door for help, and I come in and she is bagging Jenna (vent off and pushing 100% oxygen to her), like she needs to be resusitated. Jenna was more upset from having the bag on her and I finally told the nurse to stop, that Jenna would recover, she was just really upset. She finally agreed and Jenna calmed and returned to normal. Sheww..what a night. I did not want to make the nurse feel uncomfortable, plus Jenna feeds off of fear, so it was not going to work. So on to looking for a night nurse. Our day nurse covers one night through the week too, so Justin and I were in charge of the other 6. This has been very hard, but prays have been answered, because we found a nurse to do 3 nights a week and another to do 2, leaving just one for us to do ourselves. We have had the one nurse already for a night, she got in good with Jenna from the beginning, she brought her a present and Jenna loves her. The other starts tomorrow night, so we will see. Cross your fingers :)
So, on to the next crisis. One week after coming home, Jenna was getting her feeds (so long cord attached to her and pump), she had moved herself up on the couch and somehow wrapped the cord around her leg. The nurse went to get her to pick up and suction her and Jenna moved off the couch, pulling on the cord and POP! her feeding tube came completely out. All I could think of was, great we are going to have to go back to the hospital. After being reminded from justin that I needed to get something in the stoma to keep it open, I quickly got a sterile catheter and inserted it in her belly in the time being. I got the new tube, with a ballloon ready, attempted to insert it and was not able to. She was very upset, crying, kicking and screaming. She was traumatized from it coming out and I felt awful for her. Luckily, Justin attempted to get it in and it went in. Yeah Daddy!! So next step was to call the hospital to see what to do, since she originally had a non balloon tube in (because the last balloon blocked her opening to the small intestine for food to push through) and it can only be inserted by a physician. I was not able to get a hold of the TCC nurse practitioner, so I finally just decided to call the cardiac team. I had them page Dr. K (dent) since she told us to always call her if needed. So, she returned my call in 5 minutes and started making calls to find out what to so. She was able to get a hold of Dr. Putnam (gi doc) nurse and speak with her about the steps to take. That nurse called me later that afternoon discussed what was going on with Jenna. She said that Dr. P was out until that Wed and she would have to speak with him then on what to do, in the mean keep an eye on her and she began having trouble eating and vomiting a lot, we were to call asap. So, that night Jenna vomited about 4 times, but then ceased. She acted very tired, even falling asleep standing up. She woke up that next morning with a fever of 100.5 and had been sneezing through the night. She had been coughing for a couple of days, but we were trying to determine if it was from her trach or sickness. So off we went to the doctor, the ordered a nose swab for flu and rsv, plus a chest xray (because of her history and plus it was Jenna-no chances). So we were already going to Dr. Heydarian the next day for our cardiac check up (so the xray would be there), plus we were already at the hospital so we would do the swab there too. We began breathing treatments that night. By the next morning she could hardly stay awake and by the time we saw Dr. H she decided that she wanted to cover up with her blanket on the exam table and go to sleep. She obviously did not feel well. She again had another fever, 100.4, sats 77, and she slept the entire time he examined her. Her chest xray showed infiltration (?) which he said is basically pneumonia in her upper right lung. But he said it was very minimal, so it was managable at home. He definately did not want her coming into the hospital-too much sickness there. So he immediately sent us to the pediatrician, again. She gave us a shot of antibiotic, a script for tamiflu just in case it was H1N1, which she did not think so. We came back the next day per orders, and Jenna was so much better. She sounded better and seemed happier. The flu tests came back negative too. Yay! So, of course being on antibiotics, her stools were messed up and she was very upset because it hurt. But she seems to be doing better now, she is off both now and just still doing breathing treatments. No fevers for a week. Her trach secretions were positive for pseudomonous (infection) but the antibiotic helped this. She is better now. She is sleeping through the night well and is very attached to mommy and daddy through the day. She is still really anxious and nervous at times, but is getting better. All in due time. We went back to her pediatrician this week for RSV protection shot and will return in January for the next and to do another xray to make sure everything has cleared up. In through out her illness, we also watched her vomiting. I spoke with the nurse a few times and she said that Dr. Putnam did not want to change her tube out if not needed, because it would require her going under anesthesia and in the OR and he did not want to do that. So, we would just watch her. So, far we are back on her regiman, and she is doing fine, no vomiting. Hopefully this will keep up. We have had this tube in almost two weeks. We are already set to go see the gi doc January 5, so he will let us know any changes then. Hopefully we will hear from the ENT docs prior to that, since we are supposed to have scopes with them and we can do them all together, so we do not have to make more than one trip. We are supposed to go back in Feb to see the pulmonary doc and then back in April for her next heart cath. Busy next few months.
So, this week we prepared for Christmas. Since, she had been sick and me too, we were not able to do pics yet :( But soon enough, so we can send pics out! Also, we did not want to take Jenna out and chance getting her sick, we decided to have family come to our house. This required cleaning and preparing, but thank goodness family insisted and making the food and bringing it in, so we did not have to bake. It forced me to completely organize her room which was good, soooo many supplies. Her room looks so cute, just with her hospital equipment included. Unfortunately though, Pawpaw Cliff was ill (so no visit) and Meme too. Pawpaw had fallen in the driveway and few days before, and bruised his ribs pretty bad and was not able to get out of bed. So we were not able to see them, but hopefully soon and we can do gifts then. We videoed and took pics that morning of her, she was excited because HO HO (santa) had come and there were lots of presents under the tree. So many more to fill the house, yeah. She LOVED opening her presents, ripping into the paper, and she insisted on Daddy opening every box that she got every time she opened it. Go figure. Spoiled :) Even after it was over, she went back over to the tree and tried opening presents for other people. It was so funny. My family came around lunch, we ate and then all the girls wants to open presents. This was fun. Poor Uncle Stu was setting right where the girls were opening presents, so he was managing all of them while they ripped into the paper and screamed. It was funny. Jenna was trying to open everyone's presents as they came across her, she thought they were all for her. We loved watching her enjoy it. It was so wonderful being home and her actually getting to enjoy something and not be cooped up in the hospital. Later that evening Nonny and Uncle CJ came which was nice to see them. We ate dinner and opened more presents. Jenna loves her cleaning trolley from Nonny, she just goes around cleaning everything like she is a little housekeeper. Now she can help Mommy! She played her little heart out and slept well. We enjoyed the day very much.
So, needless to say it has been a crazy few weeks. In between, treatments, medicine, dr appts, eat, sleep, setting up her feeds, etc there is just no time to set. We are sooo tired. Someone has to be up with her at all times. I got really sick around the time that she did, so I was worthless for a few days, thank goodness for Justin, he was great. She has figured out how to walk again, which is wonderful. Her therapies will start this week, speech, developement, physical therapy. She walks like Frankestein, but that is ok, she will get better. I am just so happy that she has improved this much and we are so thankful that has come this far.
We want to just say thank you sooooo much to everyone for everything. The 19 weeks that we were in the hospital was long and hard and we could not have got through it without all the love, support, gifts, and prayers from everyone. We are so thankful to still have our babygirl with us and that she is doing so well. We do not want to go through something like this again, but are prepared if we have to. We knew the day she was born that our lives would not be easy. We just try to take it day by day and leave her path up to God. We as her parents are just here to support her and guide her. All we can do is provide all our love to her. Which we feel that we have done. So thank everyone, from the bottom of our hearts. We cannot express it enough to you.
I will try to keep you posted on her status more. Again, I am sorry for not getting to you before now. It has just been hard and without internet access even more difficult. I cannot just take off out of the house anymore like before. When we leave, we have to take everything and the kitchen sink with us. :) So much stuff. But that is ok, she has a few extra pieces of equipment, but she is with us and we love her. Thanks again, keep praying for her as always. We love you all. Be safe.
Love, Jenny, Justin & Jenna