Progress...

I went up to the hospital right after we dropped Lily off at preschool. Nathanael had had a wonderful night. NO SVTs!!! He had a couple episodes of bradycardia but they reassured me that it's just a preemie thing. The nurse took the feeding tube out for a break because he has the PICC line. She also mentioned that he can now wear clothes. She found him a little sleeper to wear. He looked soooooo cute :). It made him look healthier :). Then I got to hold him for an hour. The lactation consultant stopped by to chat and she wrote an order for skin to skin. So, after lunch I got to hold his naked little body against my bare chest for about 20 mins. How awesome!!! Just as I was leaving, the nurse had put the feeding tube back down and gave him a 5cc feeding. I am excited to hear whether he digested it or not. The entire time I visited he, again, had NO SVTs. A couple of episodes of bradycardia. Often his heart rate would come up on it's own, within seconds, without any intervention.
I saw the dentist and he referred me to an oral surgeon. I called and they can't see me for 2 weeks. I called a couple others but they were closed for the day. Hopefully I can get in to see one of them sooner. Two weeks is way too long. Pain is quite severe at times.
So, I would say that this is the best day Nathanael has had in a long time:). I can't wait to see what tomorrow brings :).

Kelly

Problem Solving

Today was a day of working things out so my life seems more manageable. I got a refill on my pain meds, got a prescription for reglan, to help with milk production, made a dentist appt, managed to go to the hospital to see Nathanael and spend the entire day with Lily and Alex!!
Nathanael had a lot less episodes of SVTs today but now several episodes of bradycardia. At least bradycardia is a more normal thing for a preemie to do. He was not tolerating his feedings so they put a PICC line in. Poor baby :(. I got a nice long visit with him tonight. I even got to change his diaper :). Simple pleasures! I'll take 'em!!!
I am getting a sore throat...hoping it's gone by the morning. I was planning to spend most of the day at the hospital. The plans will change according to my symptoms.
Well, it is late and I am very tired. Off to beddy-bye!

Kelly

Todd came home early, showered and we all headed out to the hospital. Nathanael had several runs of SVT through the night, some lasting a long time (up to 25 mins). He did ok with his feeding though.
When we arrived Todd and I split up. I took Lily with me, back to see Nathanael. Alex had to hang out with Todd in the waiting area because he has a cough. The nurse told me that he had several more bouts of SVT. This time his O2 sats were affected a couple of times. He also had some runs of arrhythmias. Lily and I hung out and played Go Fish for a couple hours. Todd took a turn with Lily while I hung out with Alex.
Alex suddenly got tired and flushed. We all went to the cafe for a quick drink. Alex fell right asleep and I noted his forehead got hotter and hotter. Within 30 mins or so Alex was red and sweating. So, one more quick visit, to see goodbye for the day and we all headed home.
A quick call to the nurse just now....Nathanael did not tolerate any feedings since noon. If he doesn't start eating soon they are going to have to put in a PICC line or peripheral IV, which will suck for him, big time. He continues to have runs of SVT despite his digoxin level being therapeutic.
I have a horrible tooth ache and am still sore from the surgery. I am running out of pain meds and had to space my meds out too much today. Needless to say, I am uncomfortable. Todd has to go to a client site all day tomorrow. I am starting to have anxiety already. I feel like I can't take too much more. Between two sick kids and feeling horrible myself, I want to just give up. Nathanael is going to be up at the hospital by himself tonight and most of tomorrow. That's just not right.
Ok, gotta do something else, other than complain....

Kelly

Little Challenges

We got a call early this morning. They were transferring Nathanael to Cardinal Glennon with SVT, two runs, lasting 30 secs and 10 secs. They were able to bring him out of it by pushing his knees to his chest. This morning they heard a heart murmur, which is new for him. They decided that even though all his tests were normal that they should transfer him, just to be safe.
At Glennon they did an echocardiogram and found two holes in his heart, called PFO and SVD. The first usually closes up within the first week of birth. They think his just may be delayed. The second can also close on it's own, but sometimes takes up to a year.
He had another run of SVT, this time lasting 2 mins. Todd and I were present and man, it scared me, a whole lot!!! Once they got the heart rate down, it dropped. Freaked me out. The cardiologist said that sometimes the second hole can cause these accelerations. They are starting him of digoxin. They said he will go home on it :(.
I went home to get the kids around 4ish. Todd called a while later to tell me that Nathanael had a run of bradycardia. They were also able to snap him out of it quickly. They put him back on caffeine, which they had stopped upon admission.
So, even though he has a lot going on the docs said that he is stable and doing fine. They are most concerned that he is not tolerating his feedings. Todd just called to tell me that he has tolerated his last two feedings, which is huge, because he hasn't digested any breast milk in days.
Todd is spending the night. The kids and I are all snuggled into bed about to turn out the lights. I count my blessings that although he has had an eventful day, things are stable. I just think of how many issues he would have if we had delivered at 26 weeks, when this all started.
So, I will thank God for being so great and try to get a good night sleep, knowing that He is taking care of everything!

Kelly

On The Mend

Everyday brings strength and less pain:):). Hooray! I must admit, I am getting a little tired of being in pain. I have been able to take less medication each day and have been able to move around a bit better so, I am hopeful it will end one day soon!
I had an absolutely fabulous day at home:). The kids and I all slept together in my bed. There is nothing better than rolling over in the middle of the night to see one of your kiddos just inches from your face. We slept in, painted finger and toe nails, got out the Easter stuff from last year...etc, etc... just plain, family fun stuff. I had a really long nap, which felt great. We all got ready and headed out to the hospital. Nathanael is doing well. They moved him into an isolette bed, which is where they go when they are more stable. He is still on c-pap, but they were able to turn it down a little. He also managed to keep some of his feedings down. I got a nice long visit, with another great surprise. They lifted the RSV restrictions on visits and Lily was able to go in and see Nathanael!!!!! She was super excited. I was so thrilled for her. Todd took her in and he said she was on cloud nine!! What a great surprise! The kids and I made up little pictures for Nathanael's bed. His little space is very homey now. I can't wait for him to come home.
So, I am going to get ready for bed. Alex fell asleep on the way home, so I think it's just going to be Lily joining me in bed tonight:). I am going to spoil them rotten and I don't care!!!
Life is good. God is so gracious:).

Kellyxo

Home, Home, on the Range...

I am not sure when I have seen light in my kids eyes like I did, yesterday, as we left the hospital, hand in hand. They were telling everyone they passed in the hall that "my mama is coming home". We had dinner together, all went to Lily's t-ball practice and I was able to tuck them in bed:). What a wonderful feeling!!!
Being home isn't all fun (yet). I had to crawl up the stairs, with help, in order to tuck the kids in. I can't get into the durango or climb the two steps coming into the house. I had an episode of chills with shakes late last night. I was really worried that I was going to have to back to the hospital. I shook til I fell asleep. I woke this morning in incredible pain. I started thinking I left the hospital too early. Once my pain meds kicked in, all was well again.
Back to the positive things.... Nathanael is doing about the same. He is still on the c-pap and having trouble with his feedings. But he is holding strong. And he's darn cute!!!
Today, the kids went to school. Alex had a hard time leaving me. He looked scared, like I wasn't going to be here when he returned. I promised him I would be here when he got home from school. Jessie is going to take me up to the hospital around 12ish. I will get a good visit in and be home in time for the kids.
I realized today that this part of the journey is going to be tougher than I thought. I want to feel normal, so badly. And I miss Nathanael more than I ever imagined. But life is good and so is God, so we will make it through it:).

Kelly

My Last Days!

According to my dr, I may actually be able to go home tomorrow:).
Nathanael is just about as cute as they get. He looks like a little duckie:). Love him!!! He is doing well again today. He is still on the c-pap machine. He is no longer under the fancy spot lights:). He isn't, however, tolerating the feedings again today so they are on hold. Well, at least it will give me time to save some milk for times when I cannot be here.
It is starting to hit me that he is not coming home with me and it sucks! I just hope the time passes quickly for him. I can't wait to get home and start setting up his bed, etc. I am so excited about going home and yet full of guilt with having to leave Nathanael here.
I have been getting around pretty good today. I hope my re-coop time is quick so I can get back into the swing of things. I am thinking about maybe a water aerobics class?? It's gonna take a looooong time to get this babe back in shape!!
Well, I have to get some sleep. Til tomorrow...

Kelly