HOME!!

Our sweet baby boy is home!!!  It's been a roller coaster of a week, but Jack was finally discharged from the hospital on Friday night, January 18th, at 6:45 pm.  He was discharged weighing 7 lbs, 13.2 oz- pretty amazing how much he's gained since birth... we are fortunate that he loves to eat thus far!  94 days total in the NICU- thank goodness we are out of there and ready to start raising our beautiful boy!

We did have to bring Jack home on 1/8 of a liter of oxygen and an apnea monitor, so we are getting use to the cords and machines at home.  The monitor goes off if his heart rate goes out of a certain range (>220 or <90) or if he stops breathing.  The alarm has already gone off a few times, as he gets VERY feisty when he's ready to eat and his heart rate soars!  We are learning that we have to start getting him ready 30 minutes before his scheduled feeding time so we minimize him getting upset and setting off the alarm. We will see a pulmonologist in 3-4 weeks, who will decide how much longer Jack will need to stay on the oxygen.  We are seeing his pediatrician for the first time on Tuesday AM and then headed to the ophthalmologist on Tuesday afternoon so that we can monitor Jack's ROP.

Leading up to his discharge, Jack had a good week and was passing all his tests, so we knew he'd be home soon.  Matt and I were supposed to "room in" at the hospital on Tuesday night and potentially take Jack home on Wednesday.  "Rooming in" is where we stay in a room with no nurse help and see how we do with the oxygen and monitor.  Unfortunately, Matt wasn't feeling well Tuesday, so he went to the doctor before we went up to the hospital and he tested positive for the flu.  We'd both had our flu shots and Matt thought he just had a sinus infection, so it was pretty frustrating... such terrible timing!  We had to cancel the "rooming in" and start talking to an Infectious Disease pediatrician on how to proceed.  Matt was quarantined for a few days and started taking Tamiflu.  They also put me on a preventative dose of Tamiflu so that I could avoid catching it.  Matt went back to the doctor on Thursday morning and tested negative, but the doctors wanted him to have a few symptom free days before being in the same room with Jack.

We were hoping to wait a few days so that Matt could bring Jack home with me (fortunately there were a few delays on test results, so that got us a few extra days), but Jack was ready to be discharged on Friday.  They didn't want to keep Jack in the NICU any longer due to various reasons.   I "roomed in" with Jack on Friday morning by myself and my parents drove in from Arlington to help me Friday afternoon.  All went well and Jack was discharged Friday night!  Matt watched from afar with a mask as we loaded Jack into the car and brought him home.  My parents helped me drive him home.  Matt hasn't been able to help or be close to him yet, which I know has been so tough for him, but we're trying to be extra cautious and have 3-5 symptom free days for Matt. Hopefully tomorrow Matt will be in the clear and no more masks or gloves and lots of Jack snuggle time!

Some pictures from Friday:

Getting Jack's footprints

Jack's homecoming outfit

Matt watching from afar  :)

Loaded up and ready to go home!

Home at last!!  (Matt is holding his breath :) )

Tucker and Jack- BFF

Comfy at home!

Busy Week!

It has been a busy week for Jack!  He's up to 7 lbs, 7 oz as of last night.  He was 12 weeks old this past Tuesday.  Jack went to an open crib from his isolette on Wednesday.  He went down to 1/8 of a Liter of oxygen this AM, which is what he can go home on!  The doctors will be monitoring his feeds and weight gain over the weekend (they are now only doing bottle feeds, no more tube feeds as of this AM) and they'll see if he does well.  It seems he really loves to eat and has done very well on his bottles.  Finishes most of them each time!   If the weekend goes well, a homecoming could be very soon!  He'll have to do the car seat test- 90 minutes in the car seats with no desats.  He will also need to have his hearing and eye test, so prayers that he is good and healthy there.  I'm writing this from his bedside, so it will be short and sweet, but he is doing great and we're praying that he has an awesome weekend!

Due Date

Well, my due date was yesterday- January 3rd.  Our sweet Jack isn't home yet, but he's made some awesome progress since Christmas.  He's up to 6 lbs, 11.5 oz- getting so big.  On 12/30, he moved to 1/2 Liter on the nasal cannula and has been on that since then- he seems to be doing pretty well on that. He also took his first bottle on New Year's Day- very exciting!  He did really well- took 20 mL's out of 55 mL's.   On January 2nd, I gave him his first two bottles and Matt gave him his third- and he took the whole bottle each time!  We were so very proud of him- but I think it wore him out, because he was really tired yesterday and only took 1/2 for me the first time and a full bottle the second time.  Slowly but surely trying to build up his stamina so that he's able to take 8 full bottles and come home!

In other big news, Jack was moved to Level 2 on January 2nd!  He just moved across the hallway, but Matt and I were happy he was able to make this step, as it is one thing closer to getting him home.

Also, we've tried non-nutritive breastfeeding (meaning it's just practice and they won't count any of the milk he gets towards his calories), but he hasn't really picked up on that.  We'll keep trying- just want to ease him into all this as he learns to bottle feed and don't want him to be too tired.  He's a pretty amazing little guy- Matt and I are so proud of him.   Still praying for patience and a peaceful heart on his homecoming- and that we stay sane with the daily trips to the hospital.

Happy New Year!

Snuggle bunny

Cheering on the Texans in his new gear

Merry Christmas!

Matt, Jack and I had a wonderful Christmas with Matt's family.  Jack didn't make it home yet- but he's done so well the last week, we've definitely seen some miracles!  On Christmas Eve, the doctor's decided to move Jack to the nasal cannula, so a big step there- and only after a few days on the CPAP!  He's on 1 liter of oxygen right now and once he's down to 3/4 of a liter, then he can hopefully bottle/breast feed if he's ready.  They are beginning to assess him at each feed today and if he meets certain criteria at each feed (awake, etc), then they'll see if he's ready for feeding.  The technique they use is called "cue-based feeding."  I'll write more about that once I learn more.  Very exciting!  We are so very proud of him- making such big strides the last week! 

Jack is up to 5 lbs, 13.5 oz as of last night- he gets to start wearing newborn size diapers today!  Big step up!

God is good- we're so thankful for the gift of a wonderful, beautiful son this Christmas.  We can't wait until we're able to bring this gift home  :)

Below are a few pics from Christmas- Matt and I in front of the tree at his mom's house, St Martin's on Christmas Eve (such a beautiful service!) and Jack in his "first Christmas" outfit on Christmas Day.

CPAP!

Wonderful news- Jack moved to the CPAP on Wednesday!  Praise God- progress!!  AND he's at 26% oxygen this AM (room air and goal is 21%), so he's doing so well!  He's also up to 5 lbs, 11 oz.  Getting so big and cute, if I do say so myself  ;)  He's still in Level III, but hopefully he'll go to the nasal cannula soon and then he'll move to Level II and get to start bottle/breast feeding. 

Jack got to meet Santa on Tuesday- one of the respiratory therapists dressed up and so Santa was able to hold him and get a professional picture.  Below are the ones that Matt and I took with our camera.  Cousin Miles let him borrow an outfit to wear to meet Santa and one of the nurse knit his Christmas hat. 

In other news, our sweet, white boxer, Tucker (below) had to have surgery on Thursday to remove two mast cell tumors that we found on his hip and his leg.  He's still in recovery- trying to keep him still so the wounds heal is not easy!  We sent the tumors off to be analyzed, so please pray that they got everything and that he recovers well.  We can't wait for Tucker and Jack to meet- we are sure they will become best buddies!

Update

A quick update from yesterday- just talked to the Dr and Jack's blood gas looked good this AM!  They are going to lower his breaths per minute from 35 to 30 and see how he does.  They'll do another blood gas on Wednesday to see how he's doing, but if all goes well they are going to start to wean him off the NIPPV so that he can go to the CPAP.  Great news!  Definitely an answer to prayers that we are seeing good progress!  Keep on praying  :)

XOXO- Christine

Two Months Old

Jack is two months old today - he'll be 9 weeks old on Tuesday.  His gestational age is 38 weeks this coming Thursday.  We can't believe it has already been that long.. we are so ready for him to come home!  He's still in Level 3 on the NIPPV for his lungs.  He has another blood gas tomorrow AM- praying that goes well and he can go to the CPAP.  He's up to 5 lbs, 5 oz- growing so fast.  He's taking 41mL of breastmilk, 8 times a day- which is about 11 ounces a day.   He's still taking all his feedings through an OG tube- we aren't able to start bottle or breast feeding until he's down to the nasal canula (which is after he's off the CPAP).

I decided in church today that I'm going to start praying everyday for a miracle- that Jack comes home by Christmas.  The doctors would probably think this was ludicrous, but I thought that I would try.  If God isn't ready for him to come home by then, then we'll be peaceful that He has a different plan.  It would truly be a miracle for him to come home by Christmas.  We will see!  

Praying for patience everyday for Jack's homecoming- "But if we look forward to something that we do not have yet, we must wait patiently and confidently."  Romans 8:25

Mommy and sweet Jack time- love my baby boy.

 

 Uncle Greg got to meet Jack for the first time Saturday!  Jack wore his Aggie hat for him

 We made Christmas onesies in the NICU Support Group-  "Jack Frost"