So lets just start from the beginning.....
(this is probably where you should go get a nice cup of coffee and a snack - I have a feeling this is going to be a long post.....)
First of all it was really weird to get up on Thursday and know that I was having a baby that day....I still had a few things on my to do list for Thursday morning (which was probably good - kept me busy so I couldn't think about how hungry I was!!) One of those things was...finishing that silly project of packing my bag - yeah - I wasn't done with that....oops :) I also made some goodie baskets for the nurses and they needed some finishing touches so I took care of that too :)
We headed out into the pouring rain to have a baby around 10 am. The weather was nasty and the boys were less than thrilled that we were all leaving. They got me all checked in, IV in, monitors on - very much hurry up and wait!! We approached the big moment....only to get bumped by an emergency. We didn't actually get this whole c-section on the road until closer to 2pm. So, I actually laid in the hospital bed and had pretty strong and regular contractions for a few extra hours - makes me wonder a little if Thursday would have been the day even if the c-section hadn't been scheduled.....Of course, I had sort of taken myself off of bed rest 2 days prior so it may have been the increased activity that made things move right along.
Back to the whole c-section thing.....I feel totally jipped!! It was really weird to just show up at the hospital at a scheduled time instead of just waiting until labor starts. Then I walked into the OR and a few minutes later after a little tugging and pulling Dr. McIntrye held up a wrinkly, red faced screaming baby boy. Mr. Easton James was born - 6 pounds, 11 oz and 20 1/2 inches long. They took him over to the side of the room and did his assessment. Everyone kept saying his back looked great. His apgars were 8 and 9 (can't get much better than that). They wiped him down, wrapped him up and brought him over so this momma could get her eyes on him for the first time up close. The PA who was there from the NICU let Stephen and I spend a few minutes with him. Stephen got to hold him and I got a couple of good looks at him - I was still getting sewn up and then off he went to the NICU. They assured Stephen that after his initial assessment they would allow him to come down so Stephen hung with me for a few minutes and then headed out to share the good news and most importantly the NAME and stats with the grandparents and Aunt Heather who were patiently waiting. Literally, from start to finish the whole experience took less than an hour. They wheeled me off to the recovery room and within a few minutes let Stephen go hang out with the little guy.
Fast forward a bit. While getting me all settled in my home away from home for the next few days, Stephen was sending me text message updates - the most exciting being that rumor had it Easton was going to be heading up to the regular nursery at shift change!!
Sure enough about 6:00pm the little guy was finally in this momma's arms!! He looked so much like Jace and he liked his feet literally up in his face. He looked like a breech baby (except he wasn't breech) and was folded in half like a taco. Grandma and Papa 'Dogan, Grandma and Grandpa Diehl and Aunt Heather all got to meet him and get some snuggles. Uncle Tony, Travis and Brandon also stopped by to meet the little man.
Our first night was pretty uneventful. He was eating well and pretty sleepy. Stephen and I both got a little sleep. I had trouble turning my brain off so unfortunately I spent a good portion of the night staring at the ceiling. Friday was a little more hectic. Easton headed down to the NICU with daddy around 8 am for some testing. I got to get up and shower for the first time (felt like a new woman) and then eventually headed down myself. The day was spent making trips back and forth to the NICU, trying to keep up with updates from doctors and millions of text messages going to and coming from Stephen and I's phone trying to keep each other up to date along with all the family. Friday night unfortunately he had to stay in the NICU which provided this momma plenty of opportunities to walk as I treked down to the NICU every 3 hours to feed him....all night long! Good news finally came Saturday afternoon when he was transferred back up to the regular newborn nursery for the rest of his stay. We had a ton of visitors on Saturday afternoon and then another relatively good night Saturday night. Sunday - HOME!! We got discharged today around noon and got to bring this precious baby boy of ours home.
So, that's the overview - now on to the juicy details!
Thursday Stephen was with Easton in the NICU while I was recovering. They didn't do any official testing but he had several initial assessments and some testing was ordered (all to be done the following day). We found out later that likely the reason our evening turned out so great (with Easton being able to come up to us instead of staying in the NICU) was because there were two other very sick babies that were born within just a few minutes of Easton. The expertise of the neonatologists were needed elsewhere that first night and since Easton was stable we got to spend that precious first night with him in our room and he got to meet the grandma's and grandpa's who had been so excited to get their hands on him!
Friday we knew that he was going to have some testing - but I don't think Stephen or I realized the extent of the testing that this sweet boy would go through. In the time it took me to shower upstairs Easton had an ultrasound of his abdomen, head/brain, both hips, bladder and kidneys. When I arrived he was having x-rays of every bone in his body (I'm really not exaggerating....) I will say this...the NICU by nature is a very quiet, soothing place. HA - not when Easton is there having x-rays done. Stephen came out to get me (I was in a wheelchair for this first trip downstairs) and as we walked in he laughed and said hear that baby crying? yeah, that's Easton - he was in the farthest back corner of the NICU but everyone there could hear him!!
While I was there I got to see the neurosurgeon - who if you have been keeping up with the blog I saw in the office several weeks ago. She redeemed herself on Friday. She was very nice and very informed and made me feel very comfortable. She made me laugh - must have pet Easton's soft spot 10 times while talking to me. She just kept saying that she was thrilled with how perfect his soft spot feels. (on a newborn's head the soft spot should be just that - soft and a little sunken - if it isn't it is an indication of increased pressure in his skull which is hydrocephalus....something Easton will be watched closely for over the first year). She also said that she had looked at the results of the head ultrasound which is how they are able to check his ventricle size - Stephen asked about the size of the ventricles and her comment was "Oh, they were so small I didn't even measure them!! They looked just fabulous." She also mentioned that Easton may need an MRI in the relatively near future but because the ROC group (our high risk OB's) had seen reversal of the Arnold Chairi (Look way back for that explanation - or just take my word for it....it's a REALLY good thing!!) and because he isn't showing any signs or symptoms of the Chairi there is no need to "go looking for something." Overall she was THRILLED!!
We also talked to urology. We got super good news from them too - but they were the ones that kept Easton in the NICU overnight. Now, bear with me....Urology I understand the least amount about - so I'll do my best here.....
They did an ultrasound of his kidneys and bladder which came back looking completely normal. They also did another test which is to look for kidney reflux which as best as I can understand they fill his bladder with "urine" (aka - saline in this case) and watch to see if the "urine" backs up out of the bladder and into the kidneys. Results were also perfect. They decided to do what they call "in and out catherization" to have objective data about urine retention. Here is a little background first. A common issue for kiddos with spina bifida is one of two bladder concerns. Incontinence (which is obviously not a big deal when you are talking about an infant) and urine retention which is where the kiddo is able to urinate but is unable to fully empty his bladder. OK, now back to the plan - they decided to make sure that retention was not an issue - the urologist said he did not foresee it being an issue but decided that since he was here it was worth making sure. So, poor baby Easton was cathed two different times (about 12 hours apart) and there was NO urine either time!! WoooHooo - that means no cathing at home for us!! Praise God!
Orthopedics came by two different times. Orthopedics is the specialist that I didn't think we would really need and it turns out we are likely going to be seeing more of them than anyone else. So here is the downlow with orthopedics. First of all he presented like a breech baby which means that his hip flexors are really tight. Imagine keeping any of your joints in the same position for 9 months - you would have tight muscles too!! He looked like a baby who was in a breech position - think folded like a taco. The difference in his situation is that he wasn't breech, he just didn't have the leg strength because of the spina bifida to get out of the position. The hip flexors will loosen up some - actually there is already a huge noticeable difference in just the 3 days he's been around! Second, his left hip is dislocated. That sounds way scarier than it really is. When a baby is born their hip joints are not completely formed. Sometimes kids have what we call hip displasia. It is very common in kids with spina bifida but does happen in kids that don't have any other diagnoses. Typically they put kids in a brace that positions them in hip flexion and (here's a therapy word for you) abduction - think frog leg position - kiddos stay in this kind of brace for several weeks to months depending on the severity until their hip joints are able to form. More to come on Easton's plan in a minute.....
Little guy is showing really strong quads (that's the muscle that would bring his knees up toward his chest. He is also showing good knee extension (where his knee straightens). But unfortunately we are not sure of his hamstrings (that is what would extend his hips - lay on your tummy and lift your straight leg and bend your knee - that's hamstrings) and as of now we are pretty sure that his feet/ankles have little to no active movement. So....now the plan.....The orthopedic doctor said that because we want to get his hip back in socket, want to stretch out his hip flexors and want to try to get his hamstrings working instead of putting him in a typical brace we are going to make a custom brace to meet those goals. There will be way more on that in the future as we figure out what this custom brace really means! As far as his feet go....that's sort of what I do for a living :) So - I'm not super worried. Means that there is some bracing in our future but like I said....I sort of have a degree in it and know a few people that have been doing it a whole lot longer than me! That's an area where I have connections :)
He also got evaluated by physical and occupational therapy and mommy talked to a social worker. Told you it was a busy few days!!
So this is where we are....HOME first of all!! God is so good!! Instead of spending 2 weeks (at least) in the NICU following surgical correction after birth....this precious baby boy got to come home with us today! It was wonderful to pack up the hospital room and my baby boy and bring him home to this crazy life he is now going to be a part of. We have what feels like 400 follow up appointments over the next several weeks so I am sure there will be lots more updates as we meet with each doctor individually. For now, all the doctors said go home and get situated with life and schedule a follow up in the next......
We are going to head to the pediatrician early this week. The first specialist we are likely going to see is orthopedics to figure out this brace situation in a week or so....Other than that....we are just going to do life with a newborn and a couple of three year olds.
God is good...Easton looks amazing and he is home with us! Thank you for all the prayers and please keep them coming. The next few weeks are going to be likely a little overwhelming. Lots of doctors appointments and hey, lets be honest - no parents wants to visit doctors like the neurosurgeon with their child so some of them are bound to be a little emotional. Also prayers please as we adjust to being a family of 5. Frankly, a newborn is a newborn - which means exhaustion, stress and lots of poop!! I promise to keep everyone updated on what the newest adventures are and I promise to get pictures put up very soon....I PROMISE!!
Love and hugs!