March 17th, oh happy day...Happy St Patricks Day and Happy 1 month Birthday Easton!
Originally, I had planned on doing each day on the blog to update you all on E, but lets face it, there is just no time for that so I am going to just do a recap of each week of what the Rapp family has been doing for the past month, here goes nothing:
Week One... 2/17/10-2/23/10
Well, I'm sure most of you read about our exciting trip to Buffalo and the details of baby E's arrival. Looking back I still can't believe that is how Easton got here on that wintery Wednesday. His closure surgery was on Friday, and went as expected....minus the bruising, that really wasn't expected on our part, but he healed up beautifully with the help from a little phototherapy. Through the weekend we pretty much just watched him sleep, and they monitored his pain, and gave him meds when needed. He was getting fed through an OG feeding tube. On Saturday, Cody and I got to see Caidence for the first time since Wednesday...it was wonderful, even if she was a little under the weather, and really only wanted Aunt Amy :) Easton opened both of his eyes for the first time and squeezed mama's finger tight on Sunday. Monday was when he got the lights, and the special "spidey vision" to protect his eyes, and at this point they were still just monitoring his BP and checking the circumfrence of his head to monitor the buildup of CSF. We started to see a pretty steady increase by Tuesday, all in all though it was a pretty good week. Everything kind of went just as we were told it would way back in January. At this point we were at the Ronald McDonald House with Nae, and Code and I were just taking shifts at the hospital with E and at the RMH with C. Trying to adjust....
right before his closure procedure
a little phototherapy to help with the bruising
Week Two 2/24/10-3/2/10
On Wednesday Easton had a few tests (an echo of his heart and a full renal workup) to rule out any other causes for his high BP. They all came back just fine, and as it turned out, he was still in pain, and with the help from some more fentynal he was able to rest comfortably. His head circumfrence continuued to grow little by little, day by day so by Thursday his fontanel was pretty full...still soft, but full. E's neurosurgeon was still unimpressed after he saw him Thursday and we were told that he wouldn't jump right into the shunt, well long story short, Cody got back early Friday morning still thinking that Easton avoided the OR for another day, and within just a few hours, Dr. Li did rounds early, and we got the phone call.....Easton was going in for a VP shunt later that morning. Apparently he impressed Dr. Li. I have no idea why but this procedure shook me up a little more from the closure. It really doesn't make sense because the shunt wasn't as invassive, but i remember being in the OR hallway talking to anesthesia and just starting to cry.....The second Friday in a row in the OR for mr. Easton....just didn't seem fair. But after we got the thumbs up that everything went well, we felt much better. Saturday was a very lax day, E was still intubated and on pain meds for most of the day, however Sunday was a big day for him..... he extubated himself around 4am and when I got there in the morning we was no longer on a warmer. Easton had graduated up to a big boy crib. Another big day was Monday, E was 12 days old and mama got to hold and bottle feed him for the first time, and then daddy got his turn too....and it was amazing for all of us! Finally we got to snuggle our baby, even if it was just for feeding him, we waited so long, it made it that much sweeter! His lil tush fit perfectly in our hand, he was just a smidge smaller than Nae, but he didn't seem too small....he was just right. Neuro took his wrap off and I gave him his first sponge bath. What a week it was! Nae had an exciting week too, she went and stayed with the Rondeau's for a sleep over... how exciting it was for her...she loves it there, and I love her being there, she feels right at home!
daddy giving E some lovin
Week Three 3/3/10-3/9/10
Easton continued to bottle, and was doing very well, and hit his shift minimum every time...lil champ. He got his stitches out from his closure procedure on Friday, and on Saturday I gave him his first real tubbie! Not gonna lie, it was a little akward without the handy net to lay him in like the ones we have at home. All in all though, I think I did an ok job, and even got to put his leads and stuff on......I was beginning to feel very official taking his temp and what not lol. Sunday was a not so fun day for lil Easton.... his bradicardic spells were through the roof. He was all over the place and had more in one shift than he would in a whole day. This was probably one of the hardest days so far in the NICU. No one had answers, but I told the nurse that I had a gut feeling it was his head. Monday we did our best at working on bottling, and when he was very alert he did very very well. He had a CBC done to check for infection to see if that was the cause of the Brady's and no such luck.... His head circumf kept climbing, but neuro was still unimpressed...I told the nurse that I never want to hear those words from them again. Tuesday was such a beautiful day that we decided to treat Nae to a trip to the zoo...it was so nice to get out and spend part of the day with her and Cody, and she had a ball. Loved every minute of it, and I loved every minute that she walked with her hands in her pockets lol.
snoozin'
fun at the zoo
Caidence Noelle
just like daddy
Week Four 3/10/10-3/17/10
Well....on Wednesday Dr. Li was impressed again, and E was back down in CT, which revealed just what the sonogram did, that his right ventricle was collapsed and the right continued to grow. Poor lil E needed a shunt tap to extract CSF so that they could check for possible infection. It was a definite that he needed a revision, but they wanted to make sure that there was no infection before they went back in. Never have I ever felt like a weight had been lifted..... I was relieved that they were going to tap his shunt to check for infection...because then we would have an answer to all of the bradicardic spells he was having...now if only they could tap it. First the resident tried, for a good 45 mins, then he had to call the NP, and she tried twice and got nothing, so then Dr. Li came in and tried...barely any CSF, but enough for the Gram Stain and culture. Well, the Gram Stain came back negative (PHEW) so he was on the board for Friday. Another Friday another trip to the OR for his shunt revision. I never for a second thought I would be happy about a shunt revision, but after that week we knew more than anything that was exactly what he needed....and we were right. I hate to say it but this is when that mama's intuition really comes in handy. Easton handled the surgery like a pro, and the trip downstairs was becoming routine for him, but no worries, I put the kibosh to that when we got back upstairs.....I told him no more! He was extubated and bottling like a champ just hours after the procedure. He did have to get a transfussion after the surgery just because of all the blood they had taken from him his first few weeks of life, and now his numbers are right where they need to be. We played with him for a few hours that night...he was wide awake, and more alert than he ever has been...it was a beautiful sight to see. Easton has been a lil champ ever since, he has started to breast feed, and still bottles and just looks amazing...back to his old self again. Since E was doing so well we decided to treat Nae to another fun Buffalo adventure and we took her to the Science Mueseum and she loved it. It is nice to be able to do some fun things with her while we are up here. It's so refreshing to get outta the NICU every once in a while and just enjoy Nae for a while....As of right now she still feels like the only child and I know that we are approaching the days when she will realize that "Eas" isn't just a baby on the camera, so I love giving her that extra 1on1 time while we still can. I know she is gonna love E up when she finally gets the chance to meet him.....I just can't wait!
just before he went down to CT
looking at the 4 nurses and 2 lady Dr's staring at him...i think he's saying "ya know ladies, a lil privacy while i'm in the tubbie would be nice" lol...really i think he's digging the attention :)
just missing sissy
there she is at the science museum, having a blast
Well, that's it for now, and that's our first month at a glance! If I could I would go on and on forever, but Code always says I write novels so I'm trying to condense lol. We really appreciate all of your love and prayers that you have been sending our way. You have no idea how much it means to us. We love you all, and can't wait to get home!
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