First Day Alone with TWO

Month 1

2 Years, 9 Months

Sooo Thursday was my first full day alone with both girls. It was… challenging.

Every child is different. Some children can play quietly by themselves. Some children like to dance and sing. Some children are nonstop busy-bodies and into everything - this is Nora. At least with me. I have to pump and feed Hannah separately which chain me down… and to chain Nora down, unfortunately, I need the TV. 

Using the TV makes me feel like a bad Mother. I really don’t like her watching it a lot. I’d rather Nora play games, read books, etc. Since the end of my pregnancy, I’ve either had zero energy or am too tied up with Hannah and we’ve been using the TV as a crutch. I’m a full time working Mom and I use the TV to get myself and my daughter out the door in the mornings. I’ll use it in December when I have three of us to get out the door.  

What’s also hard with Nora is I’m not comfortable taking both girls out; Nora does not stay with me. She is super social, independent and not afraid. She wanders. I probably can’t even go to Target without her running to the card aisle. Despite this awesome weather, I’m afraid to take them to the park b.c Nora will run and I cannot run after her with Hannah. The library is my best option b.c it’s enclosed. And even there, she managed to run away from me and I have to remind her to keep quiet and stay by Mommy. Sigh.

In addition to Nora’s spirited personality, all this change in Nora’s life with a new sibling has disrupted her routine and life, really. She’s been spoiled by everyone [myself inlcuded] and Tim and I get the brunt of her acting out. Kicking, hitting, etc. I’ve noticed she’s even acting against her grandparents which is unlike her. 

The cherry on top of Thursday was Nora pooping her pants. She knows better. I set Hannah down, took Nora to the bathroom, pulled her pants down and went to put her on the toilet so I could clean her up. Except she stepped in the poop. And then my hand went in it. And then we both started freaking the hell out. I grabbed a roll of paper towels and went to town, threw out the underwear. Unreal. Now I can laugh about it.

By the time Tim walked in, I was in my chair pumping while Hannah was in her baby seat and Nora had climbed up onto the changing platform of the Pack-n-Play, playing “drums” on everything on top of the mantel. Welcome home, Dad. Then I drank a beer. 

Angels, right?

Grandparents with Hannah

Photos of the grandparents with Hannah:

Commence the Appointments!

Month 1

Hannah and I had her first appointment last week at the Thomas Center - it’s Children’s Hospital center to make ensure optimal health, development, social behavior, etc. are achieved by children who have Down syndrome - again, Cincinnati is an amazing place to be for Down syndrome support! 

We met with our Speech Therapist to check in on Hannah’s feeding. Jen was very impressed with Hannah [yay!];
- Hannah is up to 60ml per feeding
- We use the G-tube about every third bottle
- Hannah is using cues to eat and stop eating
- She wakes on her own every 3 hours to eat [and frankly, she gets hungry earlier during the day]

This week we have FOUR appointments:
1. Speech Therapy [this time I have to feed her a bottle for observation - that’ll be fun timing that bottle!]
2. My OB 4-week appointment - I’m not sure I’m taking it as “easy” as I’m supposed to - !
3. Hannah’s 1-month pediatrician appointment [!]
4. Hannah’s follow up with her G.I. surgeon to check the status of her G-tube

Whew.

One Week Home

Month 1

Things have been going well here. Hannah is still doing fairly well at night - on a good night, she wakes around 12/1 AM and 4-ish AM. Some nights she’s awake between bottles which is exhausting. Last night we were thrown a curveball; she ate at 8pm which is an awkward time; Tim stayed up until 10:30pm to feed her and put her down, but she was awake until the next bottle at 12:30am when I fed her, thankfully she went to sleep after that. 

I try to coordinate my pumping with her feeding and that was ALL thrown off last night which makes for a rough time. 

Overall, it's been manageable; or we’re just more prepared since it’s our second time. 

Passing thoughts:

- I do have coffee in the AM right after I pump. About 18oz, and that’s it for the day. 

- Hannah is the queen of pooping in her clean diaper before we can even fasten it. Her record is soiling two before I could get one on her. 

- I remember Nora’s awake time being very fussy - Hannah, not so much. 

Exclusive Pumping:

- On the days I’m home alone with Hannah, I’ll try to introduce her to the boob. The Speech Therapist [also eating therapist] told me to wait until she masters bottles to try the boob; Hannah needs to focus on one thing at a time.

- Oh my gosh - if Hannah can’t master nursing and I only pump, it could be almost a year before I sleep through the night again : (  [I have to wake at least twice in the night to pump]

- Pumping Pro: it only takes 15 minutes vs. 40 minutes of nursing

- A work friend got me the Medela pumping bra - it lets you go hands-free, however, I didn’t realize you basically have to take your shirt off to use it. It’s handy [har had] but it feels like a touch more work. I may use it when I go back to work simply to use my laptop while pumping - ! 

It's worth it to give this little one the best nutrition I can!

First Days Home...

Month 1

The first two days home have been good overall - I think Tim and I are less anxious than as first-time parents with Nora. Of course Hannah has her own personality compared to Nora as a baby.

Hannah prefers to be held and naps much better when held. She tends to sleep most of the day for now… Night one, she only woke when she was hungry; 12:30am, 3am, and 5:15am. Last night was much rougher - she was awake from 9pm until her 2:30am bottle when she finally went to sleep… I had to pump at 5:30am and of course Nora woke up at 5:50am. Zzzzz….. !! I did manage a 30 minute power nap until Nora started crying after her nap. : P

Today Hannah visited her pediatrician for the first time - we waited 30+ minutes [come on, man!] and the visit felt a bit rushed - there were so many kids there today. 

Really, though, at this point in time, all my questions will be directed towards her Children’s team; her cardiologist, G.I. surgeon and High Risk team [Physical Therapy, Speech Therapy, Occupational Therapy and Nutrition] - we’ll be having follow-ups with all these people within the next month. We were told the first year is the hardest when you have a child with Down syndrome - appointments galore!

Nora has been pretty good for the most part… she’s still harder to parent right now than Hannah; age 2, going on 3 - Lord, help us! Stomping on smart phones, running around bare bummed, hitting Mom & Dad… you name it. She is very sweet towards Hannah though; always wanting to kiss Hannah or tickle her. 

Now I just need to refresh myself on getting a baby on a schedule : ) 

Kisses from Big Sister!

Nora helps feed Hannah

Nana and the Kron girls

Yes. Nora is “getting milk” for Hannah.

Baby Station!

Family pile-on

Daddy & his Girls

No Nap Nora = 4pm pass out

The one newborn outfit that kind of fits Hannah

Peanut in a carseat!

Nora holds Hannah!

Hannah is Home!

NICU, Day 17 : Discharge

Well, we kept tight lips because many people are told they’ll be released on a specific day but are pushed out another day or so. We were told last Saturday that Wednesday would be our discharge, but we didn’t write it in stone. 

As the days went by and Hannah had no problems, we realized, “Holy cow, we’re getting out of here under 3 weeks!” We’ve been so proud of how tough and determined Hannah has been - the staff loved her and always commented what a star she was : ) 

I’m not sure how we’ll ever thank Children’s Hospital… participate in fundraisers or volunteer… we’ll find a way to pay back! They truly are the best of the best and everyone cared for Hannah. 

Tim worked Wednesday morning and arrived at 1:30pm - by 2pm we were walking out with Hannah in her car seat, all smiles! The staff smiled at us - they knew it was our big day. 

We arrived home at 3pm, just in time to feed Hannah and settle down a bit. Our friend, Emma was on her way to pick up the “community” maternity clothes I’d left on the porch for whomever comes next - I was ecstatic to be rid of them! As much as I enjoy being pregnant, I’m so happy to get back to my regular clothes. 

SO - Emma was surprised by us being home and was able to hold Hannah : ) 

Tim brought Nora home by 6pm and she kissed Hannah for about 15 minutes and helped me give Hannah her bottle. Nora has been very sweet, but needs to be reminded to be gentle!

Our first night went well in newborn terms - Hannah only cried when she was hungry - around midnight, 3am and 5:15ish. Of course, I had to pump all these times so my partner in crime fed Hannah while I pumped. 

I’m pretty tired, but not exhausted like with newborn Nora - it helps we’re already seasoned veterans! 

We’re all happy to be under the same roof and start life as a family of four!

xoxo

Goodbye Cincy Children’s

 A cute gift from Aunt Kathy & Uncle Jaimie!

In the car : ) 

Still deciding on the vibrating chair...

Baby station!

Pile on!

Mommy & Daddy celebrate Hannah’s homecoming with Mommy’s fancy Landor champagne : ) 

Another Small Step

NICU, Day 15

Hannah is up to full feedings [mainly through her G-tube]. She got her picc line out on Friday - woohoo! So the remaining item is her G-tube which she’ll have until she’s 3 months approximately. 

We’re not sure what discharge looks like yet, so please don’t ask : )  Anyway, those who are in the NICU are told a release date, but can be drug out another 1-2 days. So we’re not writing anything in stone if we do hear whispers. 

We just hope heart surgery can be held off until January because Tim is tapped out of vacation days for the year : ( 

Fresh Face

NICU, Day 12

Friday Hannah had her NJ tube removed - we can see her face clearly - yay!! The NJ tube in her nose was how she was being fed continuously. Now that she’s getting bolus feedings [feedings through the G-tube] every 3 hours, she doesn’t need the NJ tube. 

We aren’t up to full feedings… for instance, Hannah will probably go up to 50mL of milk today. Whatever the difference is of a full feeding, that bit of nutrients is still coming through her PICC line in her arm. Once she hits full feedings [the amount is determined by her weight, which is above 5 lbs now], she can get her PICC line out and head home. 

We will continue to work on teaching her bottle feedings, so the G-tube is in place to make sure she can go home but still get fed. If babies were here until they learned bottle feedings, no one would make it home in a timely manner!

On we go!

NICU Private Room - ooOOooo!

NICU, Day 13

Tuesday evening as I was pulling up to our sitter’s house, I had a call from the NICU - of course my heart dropped to my feet - thankfully the nurse was simply calling to tell me Hannah was moving up 2 floors to a private room - ! The NICU is doing a lot of renovating here, so babies have been playing musical pods. 

The babies who get private room are a bit more stable and will be staying longer than most [longer than 2 weeks?]. 

This room is “luxurious” - we had been crammed around about a 6 x 8 space which could get up to 5 people around the crib. Our private room is at least 16 x 16 - bigger than Nora’s bedroom. We have a sink, a loveseat, rocking chair, sleeper chair, TV and bathroom! It’s so much more comfortable and relaxing, less noise, less commotion. Plus I love that I can pull curtains on the windows/doors and pump next to Hannah instead of leaving her bedside. 

I also got some last minute news Thursday about visitors - which most of the area is aware of; enterovirus D68 has been spreading fast among children in the area, to the point Children’s Hospital has had record numbers of admittances. Therefore, Hannah is now allowed only four visitors in addition to Tim & I who are ever allowed to see her for the remaining of her stay. It’s a bummer, but obviously the most important decision for these children here. 

But we all know this is temporary and eventually she’ll be able to have lots of [healthy!] visitors at home. 

Nora Meets Thomas the Train

2 Years, 9 Months

During my 36th week of pregnancy, we realized the annual Meet Thomas event in Lebanon, OH was approaching. We wanted Nora to have a fun day before Hannah arrived, so we bought tickets regardless of Hannah’s impending arrival. 

Of course, Hannah came. Tim stayed with Hannah that morning while my Mom came with Nora and I. It was a fun day, a little crazy with so many toddlers around, but Nora was super well-behaved and very quiet on the train ride - just out and back, 25 minutes. Nora just observed everyone around her and looked out the window - my Mommy heart was full! 

How‘s Nora Doing?

2 Years, 9 Months

Nora had enough of one week off her routine despite all the spoiling and big sister gifts. After one week, she was definitely not herself and continuously asking about Tim and I and when we saw her she would tell us how much she missed us… ugh. Heartstrings. 

This week she went back to her sitter and I think we’re back on track. 

This week at dinner she told Daddy she needed to go potty. Tim was about to get up and she said “No Daddy! You stay there.” She went, wiped, washed and came back with just her underwear inside out. We praised her a little over the top so she knew how proud we were of her. 

Last night she had a bit of trouble sleeping due to a runny nose and stuffiness. At 1:50am I heard the patter of feet downstairs! That was a first. She came up and met Tim and said “I was looking for you and Mommy.” Tim explained it was the middle of the night. Then at 3:45am, she came in because she had to potty - middle of the night poops are amazing. 

So our big girl keeps getting bigger and I feel like she’s not even a toddler anymore - the only sign of toddler-ism is her ridiculous mood swings and outbursts when I don’t let her have cookies for breakfast. 

Hannah’s Progress

NICU Day 10

Lots of small milestones being reached here at the NICU. 

IVs were all removed a few days ago, we’re on room air, but Hannah seems to pant a little bit - her heart works a little harder with breathing. Continuous feeding through her NJ tube [the green one going in her nose] has been stopped and we’ve started feeding her in a combo of bottle attempts and G-tube. 

Not only does she not know how to suck, she doesn’t know what hunger is yet [because she was continuously fed] and she also gets very sleepy during feedings because not only is she still probably healing from surgery, but again, her heart is working a little extra harder. 

Yesterday’s bottle attempts were simply attempts. If she sucked on the nipple, we’d tip the bottle and she’d receive milk. This AM she did very well and actually sucked down 3mL which Speech and Occupational Therapy were very happy with. We put her remaining 7mL in her G-tube. The G-tube is a direct line to her stomach - it makes me a bit squeamish but I’ll get used to it. 

12pm feeding was unsuccessful - Hannah was sleepy and disinterested. So I put her entire 10mL in her tube. We use a big syringe to get it in there - it looks like this:

Crazy, right? 

Her surgeon said it would be out at 3 months, so most likely she’ll come home with it. I’ve heard anecdotally that it makes for super easy night feedings and you don’t have to wake your kid : ) 

So tonight they’ll probably bump up the feeding to 15mL and we’ll just continue to up, up, up. We’ve heard her criteria for dismissal will be “full” feedings… that number varies on her weight, so as of NOW, that would be 33mL. Slow and steady wins the race, right? 

Mommy’s first bottle attempt with Hannah - what a peanut!

NJ tube is capped! Hopefully oxygen airflow won’t come back...