11 + weeks Old!

Wow, nothing can prepare you for that first night with the babies home. Every mother out there is nodding her head... I didn't sleep a wink until 5:30 am or so and only slept two hours at the most. I felt miserable the next day! We were just trying to wing it the first night, feeding them when we thought they were hungry. I ended up in their room a lot wondering if the cries were from hunger or just baby moans. The new plan for the second night was to try really hard to get them on the same feeding schedule. If one cried to eat, we woke up the other one to eat. It actually worked out really well and we all got more sleep. Dan's mom, Deb, helped us out with both of the overnight feedings. I owe her!! I feel like a normal person today as opposed to yesterday (I was a walking zombie!) I know I will need to be up more with the feedings in nights to come, but having a night once in awhile to sleep more is crucial. Dan took Wed-Fri off of work, so Monday will be a sad day when he goes back. Luckily, my parents are coming Saturday for the week. We already have two appointments for this coming week; on Monday they go to their first pediatrician appointment, and then they both have eye exams on Tuesday. I definitely will need my parents help with those!

The girls seem to be doing really well at home so far. It's weird never knowing their oxygen saturation or heart rate, but we'll get over that really quickly! The pic below is Sofia in her new crib and then a close up.


Now here's Madeline...


Josephine got upgraded to a window room! It's sad having her at the hospital still, but in a way it's nice to try to get a routine with two so when she does come home we will know what we're doing! We had great news yesterday that, although she cannot get milk or thickened milk, she can take formula with rice cereal. During the swallow study, she took 50 mL of the formula with rice cereal. This is very promising, but we cannot rule out a G tube until we are sure she can consistently bottle. Go Josephine! Also, Josephine was receiving steroids for her lung function this week just like the other two girls. She has been without the low flow cannula off and on since Wednesday! Right now she has been off for awhile... more good news! We will know if she can keep it up by next week when the steroids are fully worn off. I wish I took a picture without her cannula yesterday, but this pic is cute!


Have a great weekend everyone!

HOME

We're home!! But we decided to bring not only Sofia, but Madeline too! Crazyness...I will try to put up pics and more info later!

Sofia Home Tomorrow!?

If all goes to plan, Sofia will be coming home tomorrow! She did a 12 hour scan last night that kept track of her oxygen saturation and heart rate. She had some de-sats, but all were resolved quickly on her own. The doctor is giving her the A-OK. Since she passed the scan, she has been off the monitors the whole day! It's crazy to be able to walk around without all those wires! She had a car seat test today, and we are pretty sure the doctor will approve of it. We'll know 100% tomorrow. As far as we know, the plan is to bring her home with us! Talk about scary!!

Madeline could be as early as Thursday, as she is getting the 12 hour scan tonight. She is doing well and we'll see if she passes like Sofia!

Josephine is getting some rounds of steroids as we try to wean down her low-flow settings. She is getting another bronch scope tomorrow, and then finally the swallow study is in the book for Thursday! We hope she isn't too far behind, because the hardest part of this journey will no doubt be having one or two at home and still having to go to the NICU!

We will see! Cross your fingers our babies will continue to do so well!

10 Weeks Old! (37+ weeks gestation)

Wow, we are really getting to the homestretch here. It's making me a little nervous! I know we have a ways to go with Madeline and Josephine, but Sofia is telling us she wants to come home! Now for the updates...

Sofia is about 5 lbs, 5 ounces already! I am so glad she made the minimum weight limit for our car seats! She's still off breathing assistance with fewer and fewer de-sats. She has a spell every once in awhile, though. Today, the doctor decided we would try to put the head of the bed flat (the heads of the beds have been up for all three girls because of reflux issues). If Sofia was to handle that, they were going to do a 12 hour scan on her tonight, meaning she would go home on FRIDAY if she passed. The scan would be monitoring and recording her oxygen and heart rate. The nurse would record what she was doing if she had a de-sat (it would be more understandable if she were eating or having cares done on her than than if she was just lying there). Well, we nixed doing the scan tonight because she wasn't really tolerating having the bed flat. That was kind of a relief! Friday feels way too soon and I can tell that she isn't ready yet. We did change her feeding schedule to be more liberal about the time. Instead of doing oral feeds only if she is awake at her fixed schedule time, we are waiting longer to see if she wakes up on her own. Before, we would just tube feed her if she was too sleepy, but now we are trying to make every feeding an oral one. We will see how that goes! She might get too wiped out but we never know!


Madeline is 4 lbs, 10 1/2 ounces. She isn't doing as well with her feeding as Sofia. She is showing she is still too immature to get the suck, swallow, and breathe pattern down. She is really eager to feed, but she will spell when she takes too much milk. The speech therapist has started working with her. The therapist decided which bottle would work the best for her, and she will work with Madeline once a day. If there are no improvements, she will have a suck/swallow study. If she doesn't do too well, we might have to thicken her milk. The great news is that she is still in room air with no assistance! She has her de-sats and even spells once in awhile, but is doing fine overall.


Josephine is 4 lbs, 13 1/2 ounces. Since Sunday, she has been on high-flow because she was having a lot more spells. The doctor and nurse practitioner weren't worried enough to do a blood work-up for infection, but they did think high-flow was necessary. She has had a lot less de-sats and spells since the switch. The doctor is planning to try her on low-flow again tomorrow. The neonatologist recruited a pulmonologist to start following her. The pulmonologist asked me a bunch of questions today about our family history (clean!) and our house environment. It looks like Odin could put little Josie (and the others, but especially Josephine) at risk, but if we vacuum very regularly we should be OK. Lets hope Josephine will excel on the low-flow! If we really can't get her on low-flow by term, we could be looking at a trache, but I really think 3 weeks will give her a lot of time to get stronger.


Talking with the pulmonologist was taking a dose of reality... we are dealing with preemies with chronic lung disease, and when they go home they won't have the lungs a regular newborn would have. We have to be really careful about colds/illnesses and keep our house spic and span. We were told that when we start having visitors, we have to tell everyone to wash hands frequently. If there is even a hint of a cold coming on, then they shouldn't even come in the house. I have to be one of those crazy protective moms (at least for the first year or two). I hope everyone will forgive me :)

All in One Room!

The crib order left to right is Josephine, Madeline, and Sofia. It's so fun having them in the same room! (Madeline is the one who had to move.) We also switched teams from IC (intensive care) to Convo (convolescent), which is the "going home team"! The doctor and nurse practitioner say the first ones could be going home in as little as two weeks (but it could be longer, we just never know). We are pretty certain Josephine will be a little behind the other two. Sofia and Madeline basically need to master feeding orally for every feeding. Yikes! Two weeks is not long at all! Scary...but exciting.

Josephine weighs 4 lbs and 7 ounces. She had been on high flow but she got switched back to low flow (one liter)! She had a bad day or two earlier this week where she was spelling a lot more. Her hemoglobin was low, so they gave her a blood transfusion. This seemed to do the trick since she is a lot better now. They will slowly wean her settings as long as she is stable. It will be another week until her swallow study. I wish I could feel more hopeful about her passing the next study but I just feel a little negative. If she failed she would get a G tube in her stomach and would probably be re-tested in 6 weeks. Grow stronger, Josephine! Last night, I helped give Josephine a bath! She liked having her head shampooed but otherwise was a little distraught!


Madeline is doing quite well! She weighs 4 lbs and 5 ounces (we can't believe Josie passed her up) and has no breathing assistance at all anymore. She did get a couple rounds of steroids, so the next couple days will tell us if she can still handle being in room air (the steroids stay in your system that long). She has been working on bottling and breast-feeding and is still the front-runner in that department. Dan gave Madeline a bath last night and she had the same feeling as Josephine.


Sofia weighs 4 lbs and 14 ounces- only a couple ounces from 5 lbs!! She was switched off low-flow again over the weekend and is handling it just fine. I hope this switch is for good because she's been off and on a lot. Both Madeline and Sofia are not getting caffeine or amenophylline (which help thwart off spells), which is great! Sofia is working on bottling and breastfeeding as well. I can't believe this is our last major obstacle. They are growing up! Don't these girls look huge in all of these pics!? Those cheeks! :)


I bet everyone's excited for the weekend...the weeks have been going by quickly for me. We need to get the house ready for them because they'll be home before we know it! Until later...

Please Grow Stronger, Little Josephine

The weekend! I hope everyone had a great work week. With all of these great days lately, we were due for a downer. Nothing too major, it's just that Josephine didn't pass her swallow study test today. I was so confident she would pass, but when I called this morning, the nurse practitioner gave me the sad news. One of the vocal cords is paralyzed but the other compensates. Right now it doesn't compensate enough to protect her airways while swallowing. What this means for us is that she cannot get any food orally as of now. She will get a repeat test in two weeks and we were told that she could pass because she will get so much stronger and bigger from now until then. Besides the swallow study, Josephine has been having a good week. She is on low-flow and is growing every day! She had another eye exam this past which showed that her eyes are still immature but with no ROP. Josie will get another exam in a couple of weeks.


Sofia is doing fine, and is on low-flow (where before she had no breathing assistance). She is currently the biggest. I have been working on nursing with her, and she'll do a couple minutes. She'll either spell (forgets to breathe, resulting in low heart rate and oxygen de-sat) or forget what she's doing. She's coming along, though. Sofia's eye exam wasn't as positive as Josephine. She is the same maturity, but is showing Stage 1 of ROP. This stage is very minimal of ROP and odds are it will resolve on its own. The doctor will check her again in two weeks and hopefully it will be resolved!


Madeline is on low-flow, too. She is ahead of Sofia when it comes to nursing! She is super interested and showing all of the rooting signs during most of her feeding times. She has even received a bottle when I wasn't there and did pretty well. She sometimes forgets to pace herself. If she doesn't pause to breathe in-between sucks and swallows, she de-sats. Because she is so interested, she may master nursing/feeding from a bottle first. Her eye exam showed the same result as Sofia's; Stage 1 of ROP. It would be really sad if their disease gets worse and they'll need surgery, so say a little prayer for them. Surgery is necessary at Stage 4 or 5.

Yesterday, the lactation consultant took a sample of my milk to find out the calorie content. I was so proud that there are 27 calories in every ounce! They say the typical calorie content for a woman's milk is 20 calories! No wonder these babes are growing so fast! :)

Dan's mom, Debbie, and Dan's brother, Pete were able to hold the babies! My parents couldn't this week because my mom was sick and my dad could have been carrying the germs too. The first picture is Deb with Sofia and the second is Pete with Madeline. How cute! I hope everyone has a great weekend and please keep Josephine in your thoughts!

Happy 35 Weeks Gestation!

35 Weeks already! Tomorrow they will be 8 weeks old! Today, Madeline weighed just under 4 lbs, so she lost a couple ounces. It was probably just water weight so we aren't worried. Sofia weighs 4 lbs 6 oz , and Josephine weighs 3 lbs 14 oz. Today I get to learn how to give an infant massage to Sofia! I am so excited!
Here is the correct order in the picture below: Josephine, Madeline, and Sofia. Good job to those who got that right- it was tricky!