Well, the first couple of days that wasn't so. Kaelyn got transferred in the middle of the afternoon, then another echocardiogram was done and by the time nurse change came around we only had about an hour to spend with her. In that hour the nurse didn't explain a whole lot to us about PCMC and what to expect. The next couple of days weren't a whole lot better. Actually, Saturday was a real bummer. Our NP came in and started talking about all the bad things that might happen with our daughter (including dropping the bomb on us that Kaelyn has Tetralogy of Fallot, in addition to her other heart complications) and even stated that "nothing will be easy for your daughter". She didn't say a single positive thing. Needless to say, we weren't too happy with her. Unfortunately, we were pretty turned off about PCMC. Then came Monday.
Monday we met a new nurse who, from the very beginning, was awesome. Jeana and I both knew right away that we wanted her to be our Primary Nurse (meaning she will watch over Kaelyn whenever she works). This is something that is really important to us, especially after our first couple of days. It seemed like before we met this nurse, all the other nurses and the NP at PCMC just saw Kaelyn as a project, not a beautiful little girl that needs love and care. This nurse was the exact opposite of all the others. It was obvious that, in just the little bit of time that she had spent with Kaelyn, she genuinely cared about her. So, I got up the courage to invite her to be our Primary Nurse and her response was perfect. "I'd love to. It would be an honor." Exactly what we NEEDED to hear.
Sadly, she is off until Friday. However, we did have another great nurse today. Also, we were able to speak with one of Kaelyn's cardiologists. So, we immediately asked her about the Tetralogy of Fallot. She said that it is nothing that we didn't already know. Just another term for her AV Canal defect and her small pulmonary artery. What a relief! Then, she also said that Kaelyn's ductus isn't completely closed yet, but she thinks that once it is, her pulmonary artery will be OK and she won't need a surgery until she is around 12 lbs to fix her AV Canal defect. Sweet! We are definitely hoping that will be the case.
They are slowly increasing her feeds, she is now getting a whopping 5 cc's (about a tsp) every 3 hours or so. A full feeding for her is somewhere around 35 cc's, so you can see she has a ways to go. She has been doing pretty good so they have been increasing them about 1 cc a day. She is almost 2 lbs, which is exciting. Its funny how much her little body has changed in the past week. She is keeping her eyes open a little more, which is fun. She is also a little wiggle worm when she's awake. We got some cute pictures of her today when she was squirming around. She's also got a pretty good grip, she startled her dad pretty bad when she let go of his finger and then quickly grabbed it again. It caught me totally off guard and made me jump pretty good too. Somehow she found out that scaring each other is one of the favorite games at our house.
(Kaelyn practicing her Kung-fu skills)
We were both so happy to hear the good news today, see her progress, and find some nurses that meet our needs. We just keep praying that things will continue to go well, and if not, that we will be able to make it through the rough times, again.
15 comments:
Just a bit of advice you might already know, but... Lily was in the hospital for 2 1/2 months. I learned very early on to keep a journal of everything that happened! PCMC is a teaching hospital, so there is a turnover in student doctors every 6 weeks. It's almost like they start over every time. There were a few times when I could look back in my records and say this was already done on that day or this hasn't been done. It can get frustrating! Ask your nurse questions, they know alot more than they are given credit for. They are the ones with your baby every day, every hour. Get a primary nurse that you like and if you don't like someone or something speak up! This is your baby and you should have a say in what happens, don't let the bossy nurses run over you, some will try :-) Be patient! Be kind! Be strong! Take little breaks during the day. I learned to love the cafteria rolls! I would go down, get one of those, a diet coke, and just take a little walk down the halls. I was blessed to be able to stay up there almost all the time except for when Lily's birth mom came down on the weekend. Let your friends and family come and sit with Kaelyn too. They will want to be part of this and can be very helpful and supportive to you.
If you need anything ask! I can get you in touch with families that are going through or have gone through want you have going through very quickly. We have a great support system! We are so very lucky to have PCMC right here, it is a great hospital, you're in good hands. You are in a lot of people's prayers.
Oh, what great advice from above.I am so glad you started this blog, there are so many wonderful people out here who have been where you are and can be so helpful to you.
You would think everyone you meet in the medical field would try to encourage you and be kind and helpful, I mean why would you choose this line of work if you can't show compassion to people, but sadly not all are. Take care, prayers to all.
P.S my daughter Sophia is completely taken with Kaelyn and added her button to her own blog too.
Ever since our daughter was born with Trisomy 21,it was a time to rejoice with every twitch, every nudge, every whisper and everything else small for her... When days were tough, it was a time for hope.
Our prayers and thoughts are with you and on your beautiful bundle.
I agree with Suzie, PCMC is a teaching hospital, so you will see residents, fellows, interns, its really annoying. A great nurse can make all the difference in the world. We didn't have great experiences at PCMC, but all of their intensivists I loved, and a lot of great nurses.
Yeah for a good nurse. she will make such a difference. I agree, record everything - on your blog works great. We are also at a teaching hospital and I have to remind them all the time of things. Ask questions. Learn. The medical team will learn to listen to you as you show that you are consistent. We are praying for y'all.
Hi, I found your blog through another friend's blog. As I have read through your blog it has brought back so many memories of both of my two little miracles. My first was born at 28 weeks and was 1 lb. 14 oz. My second was born at 30 weeks and was 2 lbs. 10 oz. We too had our share of good NICU experiences and some not so good experiences.
We learned alot about advocating for our children. This will be crucial for you as you watch your little girl grow and go through some rough times. You know her and her needs better than anyone else.
I can also tell you this, as hard as it will be at times watching all she has to go through, those little ones are amazing. They bounce back so quickly from surgeries, they are stronger than most would think, and they endure more than most adults would ever be willing to go through fighting all the way.
Kaelyn will be in our prayers as we will be following your blog to watch her progress and amaze.
Keep up that Feistiness Kaelyn!
Not much I can add, with all the great advice from above.We too have been at a teaching hospital since Zoey's birth and it took some getting use to at the beginning lengthy NICU stay.We learned that in the end,we were not there to make friends,if we did and of course we did,that was great but our sole responsibility was making sure our daughter was receiving the very best,from the very best.Primary's make all the difference.You will probably get a couple when all is said and done and unfortunately with our Leukemia marathon we did have occasion that we had to tell higher ups that we did NOT want certain nurses.Only happened twice but still.You have got to be comfortable with who is caring for Kaelyn,especially in your absence.I know Jeana saw my last post about my binder and that really has helped chronicle,along with the blog.you guys will find your way.You already are.Prayers to you and sweet feisty Kaelyn.
Hang in there. Don't let the bad days get you too down. Everyone has given such good advice, I don't have much to add. My daughter Antalya was in PCMC for a month. The thing that made the most difference was having only the nurses we liked be hers. And ask tons of questions. It seems like we were always getting conflicting information from different sources. We we heard several different things about her heart, we finally just asked for another meeting with the cardiologists and he was able to clear up the confusions.
Picture didn't show the last time I was here... would you look at that little fighter ... she looks great!!
You go girl! Thank you for teaching us all about life and its miracles.
Thank you for being born.
Love,
Dari
Hello...found your blog through Miss Zoey's. I am so looking forward to watching that sweet Kaelyn grow stronger every day. You will find that you have an amazing "family" here in blogland. Sooo many people will cheer for Kaelyn as so many can relate to your exact circumstances. I have a daughter who was born with Ds and she is now almost 15 months old. We have truly enjoyed every minute with her and you will be amazed at how much your daughter will win your heart more than you could ever imagine. I definitely encourage your and Jeana to connect through your blogs to many people as you will learn more from people who truly understand what you are going through. More than you could ever learn from the medical field!! Thanks for sharing your journey with us and I look forward to following it.
We are all in love with her! Best wishes to you all!
Hey Jeana, I know from what you said that the transition was really kind of difficult and I'm sure they've told you more than I know from over here in the middle east but I'm kind of glad to hear that Kaelyn is at PCMC because my mom is there is every week and generally so is KK. When Kaelyn was born I had a long conversation with my mom and she said how frustrated she was that you guys were over at the U because she didn't have near as much access.
We spent a lot of time in hospitals when Michelle broke her neck and I would agree with what everybody else here has said, there is going to be turnover and you'll figure out the system. The one thing I would say is that everyone in any neonatal hospital in Salt Lake is afraid of KK. Use that to your advantage because she is the best patient advocate that I have ever seen.
We love you and are praying for you guys and your little baby every day - even from half-way around the world. and despite the whole Ute thing.
Blue Skies,
Adam
I can tell from your blog that you are trying to see the good things. It does sound like there are been some rough days. I'm so sorry. It does sound like, however, you have faith and hope in the future. I'm proud of you two for that. This experience can make you stronger!! I'm grateful to know Heavenly Father is watching out of you. I hope you feel His love everyday.
Take care, Lydia Strait
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