Birth Weight

Just a short update to brag about JD’s awesome feedings and his stellar weight gain

Feedings

James continues to dominate his feedings by mouth. We practice at least once a day and for the most part he is always a willing participant. I think he knows we hold off his feeds (through the OG tube) until we can get a few good tries with the bottle nipple. At least he humors us for a bit. He can now take anywhere between 2–4mls by mouth which is AMAZING! Everyone is super impressed, obviously.

Weight

Chubby! As of Friday morning he had officially passed his BIRTH WEIGHT (well, the estimated, agreed upon, kinda random birth weight). JD now weighs in at ­­­­3lbs 6.7oz. He should be gaining about 20–30 grams/day but to us any gain is good. They have upped his feeds to 30ml eight (8) times a day and he has had no problems. Each time the nurses feed him they check his belly for residuals (left over milk) and he never has any remaining. Seems as though he is a foodie and savors each ml of milk. Definitely takes after mom and dad with his love of food.

As we approach the 4-week mark at Children’s Memorial we will experience rotations. What does that mean for us? Our favorite doctor will be moving on to something new and we will get a whole new group of docs. This does not sit well with us as we are making such great progress we don’t want someone new coming in shaking things up.  We figure Dr. O will tell the new doctors “JD is remarkable and his parents are super low maintenance.” And by low maintenance he means we are here everyday and have a notebook of questions during rounds. Dr. O has reassured us he will “be around” and will continue to check in on our little man. I told Dr. O he would one day brag about how the famous Special Olympian, James Gawel, was once his patient.

This leads me to my conversation with Dr. O regarding JD’s timeline. As we have mentioned in the past we are not trying to rush anything, as we want to ensure JD is ready to come home. Our first step is to get him “out of the box” and into an open-air crib. He needs to be up to 1800 grams (just under 4lbs) meaning if we can average about 20 grams/day it will take just over 12 days to reach our goal weight. Then once he is in the open-air crib we will figure out our feeding options moving forward. Nate and I are in agreement with Dr. O on this timeframe, and we expect the new docs will stay on the same course.

As with each of our steps, Nate and I have our own goals to reach regardless of the doctors. We want JD home before the hospital move on June 9^th. Our goal is to get him home by the end of May. I have made our goal very clear to the doctors and my authority is pretty  . . . worthless around here. However, they said we would work towards that goal which is good enough for us at this time.

This morning (Saturday) we got the call we were expecting . . . JD got bumped from our large, bright, city view Penthouse suite with only four quiet babies to the small, dark, economy suite with six loud babies. JD is use to only the finest things in life so this is an adjustment for him (and mom & dad). Unlike the real world, those who need it most stay in the Penthouse suite as that room is for the sickest babies so a move to a new room means JD no longer needs the services of that room (he out grew those services during week 2 but they liked him in that room so he was able to extend his stay). Plus, there was a new family in our old room that had just moved in with a bit more drama than JD would like. Overall this move is a good thing.

We plan to spend the weekend swimming with Connor and snuggling with JD.

Side note: In my previous post I missed spelled cleft palate, which is now updated. Also, it was brought to my attention that I often misspell words or make grammatical errors. Please know I find grammar issues super annoying so I apologize. I will not make excuses such as “I usually post late at night when I am tired” or “I read the post so many times the errors disappear the more I look through the post.” Instead of excuses I will promise to try harder and make your reading experience more pleasanter (hehehe - I am hilarious).

Beautiful Blue Eyes

Milk drunk

Ummm guys, I think this "upgraded" collar might be a tad bit too big

While the collar was being fixed we got some comfy neck time

Wiggly and loving it

Saturday night in is totally worth it

SOOOOO Big

Today was supposed to be JD’s birthday. I am not a big fan of choosing your child’s birth date because I love the element of surprise. Maybe God was allowing me to have my surprise by delivering James to us early. Besides, 4/2/12 is a way better birthday than 4/23/12 (according to one of nurses a boy was mean to her who had the birthday of 4/23 so who wants that date anyway).

Nate and I talked about how strange it would be if we were starting our whole journey today. We are already 3 weeks ahead of the game with JD making great progress. While we were not ready at that time to deliver we would much rather be at this point then starting all over. Also, the weekend would have been full of anxiety and nerves whereas this past weekend was relaxed and full of time spent with our boys (and celebrating Baby Tunes at Lauren’s baby shower). I guess the annoying saying “everything happens for a reason” is true in this sense.

Feeding

Today was a fantastic feeding day. During his afternoon “snack” he took 3ml by mouth – THIS IS AMAZING PROGRESS.

Question: How is this different than how he currently takes his feeds?

Answer: Right now, he gets 28ml (fortified with 27ml of calories – it is a powder mixed in) of breast milk via his OG Tube which goes directly into his stomach. Yet, when we work with him we use a pacifier to give him tiny tastes of milk while he practices his sucking (the rest of the milk stills goes through his OG Tube). Every baby has the natural instinct to suck but they all have to learn how to use it. However, the little munchkins need to work a bit harder. Also, I don’t think I have mentioned in the past but JD has a small Cleft Palate (see Medical Jargon for information). A cleft palate adds another level of difficulty when learning how to feed. Roll up the fact he was born early with a cleft palate and we are looking at some pretty big obstacles.

Nonetheless, JD hears about these complications and says “I dare you to challenge me.” JD was alert and was very willing to take the milk via mouth. I won’t go into the details but he used the bottle nipple to take the milk which allowed him to use his sucking reflex AND working his throat to swallow. OUTSTANDING effort. Speech was extremely excited and pleased with his progress. Feeding will be one of the more difficult challenges during his first year so if we can start to master this early it is just a matter of time before JD is chowing on a Gilbert’s Craft Sausage and Deep Dish Pizza.

FAVORITE UPDATE OF THE POST
The BIG news is JD is growing!!!!! He gains an average of 20 grams/night (the Metric System is king here so JD is going to do very well in math class) 20 grams = 0.7oz making 20 grams a night a pretty good number (last night was a HUGE 30 grams). As of today, he is up to 3lbs 3.1oz which puts him very close to his birth weight. However, his birth weight is still debatable. When they weighed him at birth he had “stuff” on him (tubes, IVs, plastic bags, etc) so his weight was 3lbs 10oz, yet that is not what they recorded. When we asked the doctor at Prentice she said “3½ pounds-ish” then when they weighed him at Children’s the next day he was 3lbs 3.5 oz. Last week, we asked Dr. O and Amy (our Primary Nurse) to confirm his official birth weight and that was still questionable as they had two different numbers. We all agreed that the Birth Announcements should read “3½ pounds-ish.” Just in case I have not confused you enough, Nate and I have settled on 3lbs 5oz as his birth weight. Got it, me neither.

No matter what the original weight his current weight is 3lbs 3oz making it a terrific day (now if only those Blackhawks can pull it out tonight). He is getting closer to that 3½ pounds-ish weight (for those math-challenged 3½ pounds = 3lbs 8oz) and we look forward to the day we can call him “chubbs.”

Based on JD’s development and how well he is progressing I would like to thank Dr. G and Dr. GB for delivering him early. Our family is blessed to have an additional 3 weeks with JD thanks to his early delivery. Kickin’ it old school but sometimes you just have to “thank God for Unanswered Prayers.” Thanks for the reminder Mr. Garth Brooks.

Go Hawks, please win tonight so JD’s daddy has the trifecta of good news today (great feeding, outstanding weight gain, and a Hawks win).

Sidenote: We have adjusted our settings so you can post comments even if you don't have a Gmail account. 

Hi Mom, loving the cuddles without the pillow

Friday Night fun

Saturday Night fun

Seriously, another picture

SOOOOOOO Big

Chubbs!

Way to go JD, keep gaining weight so I can give you lots of hugs very soon

15 Days Later

Smiles

Hard to believe 15 days ago I woke up pregnant only to go to sleep that night, on my back, not pregnant. It feels much longer than 2 weeks. This morning I went for a walk with Connor and I wanted to shout “I just had a baby 15 days ago please forgive the outfit.” Normally, when you have a baby and go on a walk people see “oh she has a newborn, I totally get the puffy eyes, no make-up, thrown together outfit” look. For the first time it hit me today that all my justification for my appearance is snuggled up tight with a window view on Lincoln Ave. I found myself telling the casher at Trader Joe’s I just had a baby and the teller at Fidelity I just had a baby and giving looks to other moms on the street that said “ I just had a baby.”

After all this trouble to let everyone know I had a baby I realized I am sad I am not pregnant any more. I miss JD being with me all day long. I miss the reassuring kicks, which told us he will always be a fighter. I even miss the extra pounds with the round belly, which told everyone I have a new little munchkin waiting to take on the world. I know I felt some of these emotions with Connor but I feel as though these are exaggerated because I am still using the single stroller instead of the double.

Don't get me wrong, JD is making great progress but we are ready for him to be home with our family. We are still a few weeks away but we are ready to start our life of 4.

Just a few thoughts I wanted to share as people have been asking how I am doing. To answer, I am doing very well. When I see my little man flourishing then it is always a good day. He is doing so well I just want to snuggle with him at home instead of the NICU . . . although with the construction going on outside our condo right now the hospital might be the more peaceful place to be.

Sorry I do not post more often but the good news is we don’t have many new updates. Plus, I thought I would have more time with the computer while at the hospital but I spend most of time holding JD. . . and I would MUCH rather hold my munchkin than use the computer.

Just a few updates:

Neck Collar

As we have mentioned, JD’s cartilage in his neck was slightly off when he was born (we think that may have been the reason he was keeping his head tucked into his neck at birth) so the neurosurgery team wanted to use the collar to help keep his neck straight. The goal is to ensure the neck is straight as the bones mineralize as he grows. Based on the first MRI/CT Scan/X-rays they took during days 2 and 3 to the MRV (similar to an MRI) they took last week they have already seen great improvement in his neck. Obviously!!!! So we will keep the collar on as he continues to grow to help ensure the neck stays straight and strong. VICTORY!

Incubator

JD has “upgraded” from a Giraffe (baby warming table which anyone who has had a baby knows exactly what they look like) to an Incubator. You are probably questioning the upgrade to an Incubator as I did. It took me sometime to understand how we were not taking a step back by putting him in an Incubator. According to Hipster Dr. H, this is NOT a step back but just a better way to use his calories. When JD is in the Giraffe he uses his calories to keep his temp up and stay warm, however, the doctors want him to use his calories to gain weight. Therefore, the Incubator is a more efficient way to use calories as it helps to regulate his temp so JD’s little body can gain weight. HUH?!?! I still have a hard wrapping my head around that logic but if it gets him “out of the box” sooner I will take it.

Goals

Dr. S and I had a discussion about JD’s goals to get him “out of the box” and into an open-air crib, which is the last step before being released. I am not rushing anything, as I know they are taking great care of JD here at Children’s, but Nate and I are goal-oriented people so we want to make sure James is on the right track. Plus, I love a good check-off list (right Spark friends).

• Temperature: He needs to be able to maintain his own temp without the help of the Giraffe or Incubator. CHECK, Above Target – he is rocking Temp Control

• Breathing: He needs to be able to breathe and maintain steady breaths on his own. CHECK, On Target – he is breathing on his own but he still breathes slightly faster than we would like to see. 

 

o Weight Gain: This is the area that Needs Improvement (notice no check). JD is up to full feeds with some additional calories added in to help him grow big and strong. He is currently doing well but he is not yet back up to his birth weight. During Rounds yesterday, I had my notebook full of notes to discuss with the doctors (I’ve seen Grey’s Anatomy) mainly JD’s weight gain in association with WHS. Nate and I wanted to make sure they were taking into account the fact that WHS kiddos tend to take a bit longer to gain weight. We don’t want to be here for months and months because he has not gained the weight expected by other babies. We want him treated the same but with the knowledge there may be reasons behind his slow weight gain. Dr. S said we will start to assess his growth potential.

Once he gets out of the box and into an open-air crib we will focus on his feedings and the best way to ensure he is getting nutrients.

Everyday, James has a new nurse falling in love with him. Previous nurses will come in to check on him, new nurses on the other side of the room will come over to see him, and the PT ladies just LOVE him. He has everyone’s heart but mostly ours. Nate and I just sit and stare at him every moment we are with him.

One last thing, JD’s first girlfriend was discharged on Saturday. As I mentioned in a previous blog, a friend from college was in a room across the way. I became friends with his wife. A week ago they moved into our room and JD was officially living with his girlfriend, without asking for permission. Where did we go wrong?!? It was nice having a friend in the room to chat with as we sat all day staring at our little ones. However, it was bittersweet when they left but we were very happy they were able to take their little lady home much earlier than they expected. JD will miss little Maddie and looks forward to future playdates.

JD wanted me to tell everyone “Go Hawks!!!!”

We LOVE this face  . . . so do the nurses

Not sucking his thumb just yet but great progress - Speech will be so proud

Little Victories

Please check out the Medical Jargon and Cast of Characters sections (late afternoon Friday) if there is any confusion about doctors or terminology as we will update each section.

We cannot believe it is only Day 10 because it feels so much longer. I am running around trying to do things totally forgetting that I had surgery 10 days ago. Although, every once in awhile my body will alert me to that fact, ouch – I got my staples out on Monday. However, I am feeling great trying to be the best mom I can for both my boys.

Nate went back to work this week and we have settled into a pretty good routine. Nate, being the amazing dad he is, wakes up extra early in the morning to head to the hospital to spend time with JD before work. After work he runs home to spend time with our big munchkin, Connor. Whereas, I wake up to spend the morning with Connor then zoom over to the hospital around 1ish to spend the afternoon and evening with JD. Then comes bedtime when Nate gives Connor the bath and I read to Connor to put him to bed. Connor was a bit of a rascal last week and gave me a little bit of ‘tude for being gone but this week he is much happier with us. It is not easy as we want to be with both boys all day but it seems to be working so far.

The past 4 days have been filled with good news:

Blood Work

On Monday they needed to do additional labs so they took more blood. He is a tiny little guy so taking more and more blood can hurt his supply/hemoglobin levels. Once again, the doctors mentioned he would need a blood transfusion making Nate and I very unhappy. Yet, after they took his blood and tested his hemoglobin levels it turns out he is regenerating blood cells like a champ. NO TRANSFUSION. That is twice the doctors said the word transfusion and twice JD “no thank you.” Victory!

Weight

After losing weight for the few days after birth we finally started gaining weight. James topped the scale at 3lbs 0.5oz, however, after he went to full feeds with no IV fluids (yay) he dropped back down a few ounces. The doctors said that is very normal and they are not concern as he is taking down all his milk with no residual. If they are not concerned we are not concerned because they have no trouble telling us when they are concerned. Plus, in last night’s weigh in he was up 2 oz again.  Victory!

Heart

The possible concerns Nate mentioned in the 4/4/12 post are no longer concerns (possible Aorta Coarctation and Pulmonary Stenosis) – this kid is always dominating. Based on a follow-up ECHO, the only concern with the heart at this time is ASD (which we expected) and, while it will continue to be monitored, it is not something to be worried about at this time. An ASD is something that can close on its own later in life or it may require surgery. Once again, we take away the good news, the heart concerns have decreased. Victory!

The Pediatrician

Dr. D came by to see us on Tuesday (brought me a Starbucks – thank you) and met JD for the first time. Turns out the doctors and nurses like Dr. D GREATLY . . .we have always known we were in good hands and now everyone knows we are in good hands. Victory!

Physical Therapy

Over-achieving James Douglas has already started his PT during Week One of life. The PT ladies are so gentle and quiet while whispering the nicest things (sorry JD, mom does not have a soft voice).  They stop by everyday to do about 20 minutes of exercises and they are impressed with his muscle tone and his movement in both legs. I noticed today the kid has huge knees. Pretty sure that means he will be a super fast runner. Special Olympics here we come. Victory!

Feedings

Abby - if I say something incorrectly when it comes to Speech please feel free to correct me . . . just not in front of everyone

Speech Therapy started today to discuss JD’s feedings. We are still using the OG (Oral Gastric) Tube for feedings (which is going very well) but we are working towards bottle feedings. No need for details but just know Speech (that is what the doctors call the Speech Team) was “impressed” with JD’s eagerness to work on his natural techniques as well as stubbornness when he told us “I am done for today, thank you.” Victory!

We have started a new feature called “Favorite Update of the Post” so we can focus on all the good news JD gives us each day.

FAVORITE UPDATE OF THE POST

JD had his Nasal Cannula (NC tube) removed on Tuesday. After our discussions with the doctors we thought it might come out on Wednesday or Thursday but we were surprised with an early removal. I walked in to JD’s room on Tuesday afternoon to see my boy’s handsome face tube free (with the exception of his tiny OG tube in his mouth). It was a phenomenal surprise and one of the many times tears of joy filled my eyes as I was reassured my little man is a BIG fighter.

Reason: With the NC tube out it means we can start working towards bottle-feeding (see Feedings section above). YAHOO! Plus, we get to see his distinguished nose and charming face. – VICTORY!

It might seem as if each day is full of shiny happy doctors coming into our room to tell us JD is super awesome. While yes, that happens, we do get doctors coming in who are very straight-faced to tell us all the POTENTIAL problems. But we choose to focus on the good news when we can. We know JD’s life will be full of challenges and uphill battles but we choose to focus on the good news that is here in the present. There is no reason to spend our energy worry about possible issues 3, 6 12 months down the road. The bad days will come so just let us enjoy the good days. We are not naive to think we are in the clear forever but we are sure happy to hear everything we have heard thus far. JD is clearly making great progress as the doctors’ rounds are very short with few updates.

Check out his delightful face without the NC tube:

Please take this thing out, my face is way too adorable for this!

Check me out, I am incredibly good-looking

I also have a nice shaped head

I may look tired but I am ready to party

Happy Easter

As always, if a post is short then it is good news. JD is doing fantastic, obviously!

Feedings

Each day they bump him up 5ml of milk so we are at 20ml and hoping to keep going. We are optimistic he will get his oxygen tube out in the next day or two (remember he is breathing just fine on his own but this help regulates to ensure his oxygen intake in stable). Removing the oxygen tube will be our next milestone as we can start feeding him by bottle – YAY!

Weight

After a few days of losing weight (which is very normal) he gained an ounce last night – Yipee! They weigh him each night and it is the first thing we ask about each morning.

Tests

When we first got to the hospital the doctors were in our room about every hour then with each day we started seeing them less and less. The less we see the doctors the less they mess with him, the less they mess with him the more comfortable he is. Yesterday during rounds we discussed a few more tests, which should be a bit easier on him. A few ultrasounds and some labs then we should be good to go for a few days (at least we hope).

Today Nate and I spent Easter morning with Connor (and my parents) watching him have an impromptu Easter egg hunt around Gramps/Lita’s condo. Now whenever he walks into their bedroom he shouts “eggs, eggs, eggs?” In the afternoon we spent time with our littlest man at the hospital helping him open his Easter basket.

In a very strange coincidence, a guy I went to college with had his first little girl on March 24^th. She too had a few challenges and had to be taken to Children’s immediately after her birth. While we would never want someone to go through the emotions we are experiencing it is nice to see familiar faces in the hall. We delivered some Easter eggs to their little munchkin this afternoon. Maybe JD will be moved into her room so the can chat at night.

Happy Easter Friends & Family!

I still think he looks like his big brother

Gramps & Lita with their littlest man

The splint is only for the IV which was has been taken out - yay

Small hands with a strong grip

JD's view from Children's Memorial - Hello Chicago

Easter Morning (sorry for my hair - ugh) - wish JD was able to join us in this picture

Love my new hat

Elmo in an egg - Greatest. Day. EVER!

Oh boy, another egg

Happy Easter James, we cannot wait to spend the next holiday with you at home

Happy Easter Baby Blue Eyes

Happy Opening Day!

Who needs to be at Wrigley when you can cuddle with this little man

 It is a beautiful spring day here in the city of Chicago and a great day for a ballgame. I walked into JD’s room this morning and heard him singing “Go Cubs Go, Go Cubs Go, Hey Chicago what do you say, the Cubs are gonna win today.” I think this kid is on to something. Maybe after 114 years James is the one to help break the curse (after today’s loss, maybe not).

With the breathing tube -- BOOOOO

Mom & Dad SUPER happy the breathing tube is out

Thank you Nia/Aunt Katie for the best burpies any little man could ask for

JD's Stylish nametag

Connor showing some Cubbie love

Just a few updates

JD had a great night. Yesterday they mentioned he might need a blood transfusion b/c of all the blood they have taken has directly resulted in his hemoglobin levels being low. When JD heard this he said “try again Dr. Sooner” and every test since then has been better and better meaning .  . . no transfusion. We do have a bit of a problem with this doctor as Nate was wearing a Longhorn shirt yesterday and it was revealed that the doctor went to Oklahoma University for medical school (hence the Dr. Sooner comment). I told him I would need a second opinion on everything he tells us. J He has been great keeping us posted so I guess an OU grad will have to do.

But the best news of the day . . . his breathing tube came out – YAHOO! You can see his little face again (although it is a bit red from where the tape was located). With the breathing tube out they can start feeding him breast milk. This truly is the greatest news we could hear today. At 5pm today we fed him 5 ml of milk and he loved it! Right now they have to feed him via tube through his mouth but we are hoping to try a bottle in the next week or so.

Side note: Last night while I was pumping (in a bit of a sleeping haze) I was so excited to see how much I am producing that I shouted out “I am a machine” and the nurses thought that was hilarious. Pretty sure the nurses have a comment wall somewhere that I am now officially a part of. If it keeps them happy to watch my boy then I will continue to make ridiculous comments.

The new accessory you may notice is his neck brace. During the MRI while looking at the spine they noticed the top of neck is slightly curved. Without getting into lots of details just know the brace is to help the bones in his neck grow properly. Right now it is a lot of cartilage but as the bones grow we want to make sure they are straight. Nothing to be concerned about but you will be seeing the brace in some pics.

It might be getting old to hear but once again JD dominated the day. The orthopedic surgeon and the physical therapist are very impressed with his hip flexors, the symmetry of his legs, and the flexibility of BOTH feet. The clubfoot is very loose, unlike a Spina Bifidia clubfoot would have been, which makes treatment just a tad easier – more on that treatment another time.

With each day we are hoping for less updates and more feedings so we can get some weight on this kid. Less updates also mean less for me to write about so if I do not post something for a few days take it as a good sign that things are going well.

Once again, thanks for the love and support. Have a great finish to your Holy Week and a Happy Easter.