If you are new to our blog, you may want to start with Beginnings - Part 1 and Part 2 to catch you up to speed on Jackson's arrival on December 11th, 2010 (yup, 12/11/10).
Yesterday Jackson spent the day at Johns Hopkins Hospital to repair a hypospadia. I'm sure Jackson will one day be oh-so-pleased that I'm discussing his nether-regions so publicly. Sorry, Jackson... Typically, if you want your son to be circumcised, it is done while your baby is still in the hospital. We had to delay his circumcision due to this hypospadia and a twisted raphe since they would use some of the removed foreskin as a graft during the repair and reroute his urethra to the proper hole.
Good morning!
Drinking some juice pre-surgery (6:30am)
We were schedule originally for 1:30 in the afternoon, but were luckily moved up to 11am. Jackson had to fast from midnight till the surgery, although he was allowed apple juice and jello two hours prior to our arrival (9am) at the hospital. He did well with this fast, although spit up quite a bit of the juice/jello as he still does not do well with straight liquids due to his reflux. He rapidly deteriorated around 10am, crying loudly as Adam and I tried to console him and get him to relax. Every few minutes we glanced at the clocks counting down the minutes till we could get him into surgery.
Don't I look cute in my hospital gown?
The nurses told us we could use the wagon to wheel him around and gave us a portable CD player with lullabies to try and calm him. It took a while, but he eventually cried himself to sleep giving us about 5 minutes of quiet before the anesthesiologist came by to speak with us and take him away to surgery.
Sleeping in the wagon pre-surgery
I wanted to go back with him to the operating room, but since I'm pregnant the anesthesiologist wanted Adam to go. I gave Jackson a kiss on his peacefully sleeping face and they wheeled him away to the OR. Adam came back shortly, telling me that they placed the gas mask next to his face while he was still sleeping which put him completely to sleep prior to the real anesthesia. Adam picked up a very droopy baby and handed him over to the professionals.
Jackson was operated on for approximately an hour (they began at 11:20 once he was fully under) and as soon as we were told he was in recovery, we jumped up and walked quickly to the recovery room. We opened the door to the room and immediately heard a cry that we both recognized very quickly. I'm sure we looked very anxious to provide reassurance and wish away any discomfort that he was having... The nurse asked if I wanted to pick him up and I did not hesitate at the opportunity. I lifted him up delicately and placed him in my arms, sending all of our love to him as his cries eased into whimpers as he settled his head on my shoulder. He cried out only when the blood pressure cuff tried to take his blood pressure (which they eventually moved to his leg since they couldn't get a reading on his arm due to his crying and squirming when it was inflating). We offered him juice, but all he wanted was to be held and comforted.
About an hour post-op we were able to remove all the wires, the IV (which once removed, took a while to stop bleeding as we found evidence to the large blood stain on my jeans) and get him dressed and out of there. By the time we were at the lobby, Jackson was back to giving us smiles.
We got very lucky and did not need a catheter (we were expecting to have a catheter in for a week post-op). His delicate bits look like they've been shrink wrapped to protect him and all we need to do is apply vaseline at the tip of his penis (which we can't see due to his dressing). His groin is certainly sensitive, but he's in good spirits overall. He cried out around 10:30 last night and I think he just got scared and was perhaps a little uncomfortable. He's a belly-sleeper and he was trying to get himself in a position where he wasn't putting pressure on his groin. After that, he slept through the night and woke up peacefully this morning.
I'm keeping my fingers crossed for a smooth few days till he goes back to JH for his follow up appointment. But as always, Jackson is a trooper and will probably do great.
As parents, we're glad that the hard part is over with. I know things could be a lot worse in terms of surgical procedures, but never the less, I'm glad that we can put this behind us. As the nurses at JH told me, this is your child and its a big deal whether its heart surgery or a hypospadia repair (or tubes as my sister had to go through with her son).
Thanks for everyone's concern, prayers, and well wishes. Happy Spring Break to you all.
...a boy! Jackson will welcome a big brother this summer (Aug. 23rd). I've already started envisioning how Jackson will react to having a little brother, let alone having someone else require Mommy's attention...it will definitely be an interesting addition to this little journey that we are on.
Its been a hectic and busy day over here starting with an early ultrasound where all checked out well with the newest addition. I continued on to work, then rushed out of work for a pre-operation physical (more on that at a later time), an attempt at getting a cervical spine x-ray for Jackson for said operation (again, more on that later) with little luck, because, oh yeah, I'm pregnant and can't hold Jackson down to have them take the x-ray, then went to the grocery store to pick up prescription with a hungry and cranky child...
So long story short...I'm exhausted but excited to share the news.
Jackson
Two weekends ago we took a drive down to Herndon, Virginia to pick up a crawling track for Jackson. I had seen that some parents built these to help promote crawling in their little ones with DS and had mentioned to Adam that we should build one when Jackson was ready. Jackson is ready and just like that, a family posted on a listserve that they were trying to get rid of their crawling track as they were getting ready to move. I responded quickly that we were in Baltimore and it wouldn't be too far for us to drive down and pick it up. Two weeks later, we drove away with a new little tool to use with Jackson. (Thanks again to Heather and her family!)
Going down...
And going up...
He is certainly ready. He's getting up on all fours and rocking...or even getting up in a "Bear crawl" position. He gets where he wants to go with his pseudo-army crawl and has even come close to transitioning to sitting from a crawling position.
Jackson seems to be getting a little pickier with the foods that he's eating. He really was easy to feed...you could give him anything and he would eat it. Only recently has he begun turning his head or closing his mouth when it comes to foods that he has no interest in. Its made meal-time a little more challenging as we're still limited to things that he can chew easily. His 4 molars have broken through, but he still needs a few more teeth to get some good chewing action going.
Speech
We started speech therapy the other day with a woman named Carrie. Jackson was very hesitant to participate in anything that Carrie wanted to do with him. She blew bubbles and each time, he turned to me, reached out his arms as if to say "rescue me". She attempted to play with a Mr. Potato Head doll going through the different parts that she was adding to his body and offering Jackson to hold those parts. She did a few simple signs and tried to get Jackson to do them by holding his hands, which he wouldn't allow her to do. She left with recommendations on things to do with him and won't be back for another month. I wish that she would be coming more often, only so that Jackson will be more comfortable working with her. The unfamiliarity makes Jackson very cautious and insecure, so I'm not sure how productive our 30-minute sessions will be once a month.
Service Issues
A special educator was suppose to come out weekly to us to work on "whatever is needed at the moment"...so some speech, some occupational therapy... However, the special educator assigned to us was available at 2:15 on Tuesdays. I explained to the woman that I didn't get out of work until 2:45 and wouldn't be able to get home until 3:30 at the very earliest (and that is pushing it). Our day care does not allow therapies to come to her home, so we have been fortunate enough to schedule our other ones for later in the day. I contacted our case manager, who has been told this MANY times and she directed me to call the director of the special education teachers for Infants & Toddlers to discuss this with her. I called her and was directed back to the director of I&T. I explained to him our situation...and told him that we would be switching day care in the fall and that I was off for the summer so I was hoping we could be accommodated in the meantime with services at 3:30 at the earliest just until I get out of school. He said they would see what they could do and our case manager contacted me a couple days later and said that there were no special educators willing to work after 3pm.
So...long story, short, we won't be receiving that service until June when I get out of work. I am going to pursue having an occupational therapy reevaluation to see if we can get OT added instead. Although, I'm guessing that by the time we have a reevaluation scheduled (which I believe they would have 30 days to schedule) and therapies started (another 30 days) it very well could be the end of my school year (the process can be very slow at times).
47 XY and 46 X?
About 5 weeks ago I had my first ultrasound and Nuchal Translucency (NT) screening for the new baby. We received our risk ratio for trisomy 21 (DS), T13, and T18. For T21, our risk factor was 1:1428 and for the other two 1 in 10,000 or something like that. This already was a significant difference to our 1:5 risk factor that we had with Jackson for T21.
We decided to forgo the amnio this time and pursued the new blood test, MaterniT21. So about 2 1/2 weeks ago, I made the trek to Mercy hospital (twice actually...the first time I went, I got there just as they were closing the lab up) and got my blood drawn and shipped away to the biotech company Sequenom.
I contacted Val, our genetic counselor at St. Agnes hospital, on Thursday to see if the results had come back since I hadn't heard from her yet. She hadn't received them, but contacted the lab to see if perhaps they had the results, but hadn't faxed them yet. She returned my call shortly later and told me that the blood work came back negative for DS. The percentage of 21st chromosome fragments were consistent with that of a pregnancy with 46 chromsomes, not 47. (They also ruled out T13 and T18)
So this baby comes with the regular ol' 46 chromosomes...the news does bring us some peace of mind although we would have been just fine with the alternative.
Check back to find out the sex of the baby...we go for our ultrasound on Tuesday.
Spring is Sprung!
Like many this time of year, we're enjoying the burst of warmer weather and trying to get outside as much as possible and airing out the house.
We've tested out our Radio Flyer wagon and went down to the beach by my in-laws...
Sitting like such a big boy!
Tried out the swings for the second time (first time didn't go well)...he lasted a little bit longer this go round...
And went down the slide for the first time...
Last weekend we attended our first event with Chesapeake Down Syndrome Parents Group and truly enjoyed our time there. We met other couples and shared stories and experiences, and watched the kids interact and play with one another. And a few weeks ago, my mother-in-law was telling us about how a close friend of her's just had a grandson with Down Syndrome. We told her that perhaps when we were done with our new crawling track, that we could pass it on to them. During the parents group we spent about twenty minutes talking to a couple with a 6 week old beautiful son with Down Syndrome before realizing that we were in fact talking to the couple that my mother-in-law was speaking of. A small world!!!
We truly look forward to our next outing with this group and hope we will get together with those we have met through this organization. Everyone was so kind and friendly, and we're all connected by this special extra chromosome.
Wednesday, 3/21, was World Down Syndrome Awareness Day. It's a day to show that our little ones have an important role in society too. A day to show that just because they were born with an extra chromosome doesn't mean that they are less worthy or less significant. It was a day to show that Jackson, our little one who came to us with something extra, is unique and will show us amazing things and makes us laugh and smile every day. He shows us that "One over is beautiful"...the slogan of the t-shirt I got from Chesapeake...
I can't imagine anyone who would think otherwise about our little man...
Happy weekend...and once again, check back Tuesday to find out pink or blue!
Jackson weighs around 22 pounds the healthy eater he is and at last measurement was 31" long. Before we know it Jackson will officially have grown out of the borrowed carseat we have (thanks Sally) and Adam will need to transition to a 4-door car with a convertible car seat for you know who. I'm assuming this will be happening sooner rather than later...
A few weeks ago we stopped in in at Kennedy Krieger to check in with their PT to see how he's doing. Jackson, of course, played stubborn and "performed" as well as he could, but they are definitely pleased with his progress. They were also happy to see that his helmet was off...(more on that later), thinking that will help him progress much better.
But in reality, Jackson is a sitting boy. He can do it, but will still fling himself backwards. He also needs to get used to catching himself with his arms when he's off balance. Speaking of arms, he's finally figured out that he can use them to push up and he even used to do so on command.
Now he's slowly getting himself up on all fours, but usually holds himself only for a couple seconds that way. He also has his own version of an "Army Crawl"...it ain't necessarily pretty, but it gets him where he wants to go...and its very amusing to watch.
His PT through Infants and Toddlers has recommended that Jackson start OT (occupational therapy) and Speech. We have an appointment scheduled for this Thursday where he will be reevaluated, and then once they get his new services set up, we should begin them shortly (I'm assuming some time in March).
For those who may not have seen on facebook, Jackson went to Johns Hopkins to check his heart via echo and ultrasound. We left with the wonderful news that there is no sign of a murmur anymore and that the hole is now the size of a pinhole. They told us to come back in three years, in which time, the hole should certainly close on its own. What a relief!! We know that many families have to endure stressful and sometimes difficult heart surgeries to repair heart defects in their little ones with DS, so we feel we really dodged a bullet and got lucky on this one!
After a very healthy first year of life, Jackson's had a rough couple of months with what seems like continuous infections. He keeps coming down with sinus/upper respiratory issues that keeps his nose stuffy/runny. With a second bout of this infection, he also picked up the stomach bug that so many people have caught this winter. He lovingly shared this with his Mom, Dad, Grammy, and Pop. Lots of fun. So we're currently on our third infection of the winter, including an ear infection. Jackson is still in great spirits, regardless of the stuffy head.
Braving the cold at my parents house in Va. We didn't last long.
And that leads me to bath time...when Jackson had the stomach bug...he had it in the form of diarrhea, constant diarrhea, for a week. The poor child had severe diaper rash from the constant irritation (I know, TMI), and because of this, bath time became a little irritable for him. A few days after the infection had left and the diaper rash cleared up, I slipped on the bath mat in our bathroom while putting Jackson in the tub, causing him to fall backwards in the tub. Needless to say, Jackson was scared (although luckily not hurt), and has not been the same since when it comes to bath time. Two days later, I tried to give him a bath and he started screaming just when I turned the water on to run the bath. I even got in the tub with him, thinking that this would help him be more comfortable and he still cried the entire time. Its been a couple of weeks, and Jackson is still terrified of the bath tub. I know that this phase should pass, but it breaks my heart every time he reaches out to me or Adam to "rescue" him from the tub. As soon as he's out of the tub, he's fine...even smiling again. This too shall pass...right?
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The day before Christmas Eve, I took a pregnancy test. My period was a day late and even so, I wasn't expecting to see a positive pregnancy test in my hand. We told our immediate family that weekend, but have held off on the news until the last few days. We knew we wanted to have a sibling for Jackson close in age. We believe he will greatly benefit from having sibling(s) as both Adam and I cherish the relationship with have with our own siblings. Jackson is going to be a big brother...a great big brother...and we feel very blessed to get to go through this experience again (although hopefully with less drama) and give Jackson a little brother or sister.
Picture we gave to family to announce the new addition.
We went for our ultrasound on Friday and the baby looks great and is measuring a week ahead of schedule. So while my initial due date was August 30th, they have moved my due date ahead for August 23rd.
In November, Adam and I went to see our genetic counselor for some preconception genetic counseling. We knew that Jackson had DS due to trisomy 21 (nondisjunction of the chromosomes causing three chromosome 21s), but wanted to have all our information together before we decided to have more children. At that appointment, we were told that Jackson's DS was due to chance, and had nothing to do with inheritance from either of us. They offered up and blood test for Adam and I, just to check our own karyotype (picture of our 46 chromosomes) just to verify this so we got the blood test that day. Both Adam and I did not have the translocation of the 21st chromosome (a piece of the 21st chromosome would reattach to another chromosome, usually the 14th) which could be passed down to future children and cause DS. We left there with a 1% chance of DS occurring in our future children (1:100...the automatically bump us this ratio since we have a history of trisomy, even though for someone my age the risk should be much much lower).
My OBGYN had encouraged me to think about having an amnio or CVS just to prepare ourselves or give ourselves piece of mind, but after the last amnio, we don't want to go through that again. I am excited that I will be getting the blood test "MaterniT21+" within the next two weeks. This blood test has only just been released in the last couple of months as the technology is so new. They will take my blood work and will be able to isolate fragments of my chromosomes verses the baby's chromosomes. They tend to see a higher percentage of fragments of chromosome 21 in the blood for women carrying a child with DS. This higher percentage would give them a positive test for DS, meaning that the child most likely has DS. The accuracy of this test is just over 99% and is the closest thing to doing an amino or CVS. In their clinical study, they looked at almost 1700 pregnancies and out of the 212 women that ended up having a child with DS, they were able to detect 210 of those.
There is certainly a lot of debate in the DS community about where this test is going and the worry that people will terminate DS pregnancies more often, but I am glad that I'm given an alternative to the invasive testing of amnio or CVS. Regardless of a positive or negative test, if we get a child half as awesome as Jackson, we'll be pretty darn lucky.
I think that about catches us up. Hope to be back sooner rather than later...
This holiday season was significantly different than last year. Instead of a bundled sleeping newborn, we had an active (although sick) toddler, who was interested in it all. Having a child has made the holidays so much more sweeter, watching their reactions which will grow bigger in years to come.
Jackson has proven to be an observer. He watches and takes it all in...and eats the wrapping paper if you're not quick enough.
On Christmas morning, the three members of our family (plus two, if you count the cats) got up and checked out what was under our tree.
