Giants

3 weeks! Not exactly how new parents expect the first few weeks of parenthood to go, but we are figuring out our own kind of "normal" and embracing it together (you know, with all our extra family members being the doctors, nurses, surgeons, therapists, etc😉)

Giants Fall, a song by Francesca Battistelli hits home lately. The lyrics that really get me are these:

"We could really live like this
Can't you imagine it
So bold, so brave
With childlike faith
Miracles could happen
Mountains would start moving
So whatever you may face

Don't you be afraid
Of giants in your way
With God you know that anything's possible
So step into the fight
He's right there by your side
The stones inside your hand might be too small
But watch the giants fall"

❤️Right now we are encountering our own kind of "giants" in the form of congenital heart disease and all that it entails. Thanks to modern medicine, Margaret's condition was discovered early in our pregnancy and we were able to cope as anyone getting devastating news about their precious long-awaited miracle would. The unknown was terrifying and left a lot of unanswered questions and we got a lot of "we have to wait and see once the baby is here" from doctors. It was ugly at times but we focused on preparing to become parents and chose to continue to be excited and thankful and not let our fears get to us. 

This last week has been challenging. We have been in 3 different rooms in the last 3 days and found ourselves back in the ICU so Margaret could be monitored more closely due to some extra pain she seemed to be experiencing. It's like some of my initial fears from when we found out about Margaret's CHD come knocking at the door as if to say "you're not out of the woods yet, don't even think about getting comfortable." Thankfully the team agreed that she was telling us we were trying to push her too fast and moving her back to ICU has really benefited her. Slow and steady is the way to get this girl home! We think she just likes the extra attention 😉

It's weird to think that our 3-week-old daughter has had two heart surgeries already, has a pacemaker and more surgeries on the horizon. She is SO strong! 

Please continue to keep our family and the medical team in your prayers! 

We are not sure how we will ever show everyone how grateful we are for your support but we sure will be trying!  

Surgery #2

Alright. All roads lead home...eventually, right?!

Our mighty little Margaret was taken back for surgery right away this morning and is now settled back into her giant bed and room beginning recovery. Surgery went extremely well (and pretty quick!) and our girl is now sporting a pretty fancy and expensive piece of medical equipment that will keep her heart in check and we shouldn't have any further arrhythmia episodes. 🙏🏻 Momma can't take another surgery or scare and we have all (even the surgeon) had conversations with miss Margaret that her job now is to work on recovery and start towards the goal of going home. We will still be in the hospital for a while but at least now we don't have to worry about arrhythmia! Being here gives us time to learn about Margaret's pacemaker and how to take care of it and all that having one entails for our little one. 

We are dying to hold our precious girl again and hopefully will be able to do that soon. 

The plan for today? Rest, wake up, get extubated, and manage her pain. 

Thank you to everyone who has been checking in on us, praying, sending positive vibes, etc. We all feel very loved and cannot even begin to express how thankful we are for all of you! 

One hurdle down...only God knows how many more before we take our princess home. Praying for patience and progress FORWARD. 

Backwards

Backwards. That's how it feels we are moving. Margaret has had a few more arrhythmia episodes over the last few days. 2 were not a concern according to the doctors as they were very brief and something about the rhythm being ok, but one was similar to the one she had last weekend and she needed to have medical intervention to come out of it. Terrifying. Seeing your 2 week old intubated and so many doctors and nurses rushing around her in the room. Again. 

We were moved back to the intensive care area of the unit - backwards, literally down the hall and we have one of the rooms closest to the OR now. ☹️

The plan for now is for Margaret to have surgery on Monday and have a permanent pacemaker placed. 

Margaret's medical team all continue to be so amazing and we can really tell that they all love this little peanut and are trying so hard to figure out why she's having these episodes while putting her safety and well-being as the #1 priority. It's frustrating for them to see her like this, too. They want answers as bad as we do. 

She's proving time and time again that she's the one in charge and as badly as we want to bring her home, we need her to be healthy and safe before we do that. 

Keep praying for our little miracle. 

Status Change

Wow. Tomorrow my baby girl will be 2 weeks old! I cannot believe it! This little lady has been through so much and is such a trooper. 

We moved down the hall to a new room and bumped out of "intensive care" to "intermediate care"!!!' (This is huge!! 🎉 Mom might have cried...)

The last few days have been exhausting and overwhelming for all of us. Margaret is recovering well from heart surgery and now we are working on getting her to eat...which is hard for Mom because she was such a good eater before surgery and seeing her struggle is hard. Margaret is struggling with eating because she can't quite balance breathing with swallowing milk. She has to work harder to get the same amount of oxygen as other babies. Slowly she is making progress, though. 

Today was a big day for us because Margaret got her nasal cannula taken off and hopefully it will stay off! Margaret had a NG feeding tube placed so we can make sure her tummy is getting full. It's a lot easier to work on eating by mouth if she doesn't feel super hungry. She continues to get nutrients and fats through her central line. 

It's amazing to me that this little peanut had heart surgery and has only been getting Tylenol for pain the last few days. She sure is tougher than I am!! I would be asking for much stronger meds! 😜

Keep praying, friends! We continue to be grateful and amazed by the kindness and generosity of everyone. 

Recovery

Margaret has been working hard since having her first heart surgery on Thursday. Recovery is going well minus a scare yesterday when she had an episode of arrhythmia. Thankfully, she's a tough little lady and was able to pull herself out of it without needing medication. She is being watched extra close and has had no other episodes so far. We are praying that she continues to move forward and does not have anymore of these scary episodes. 

Today, Margaret had her two arm lines removed - she is so happy to be able to move her arms! She only has her neck line in (which will stay in for a few more days) and has heart monitors on. She is currently receiving supplemental oxygen through a nasal cannula as well. She also got moved out of the big bed and into a crib, which is a huge deal although she still looks teeny tiny in it. It was so nice to see them taking equipment out of Margaret's room instead of bringing more in like yesterday! 

To answer a question we get daily...We don't know when she will get to go home but it will probably be a couple more weeks in the hospital. All we know is that she is doing well after the surgery and we have not yet had to have a conversation about her open heart surgery that will eventually happen. We are taking everything one day at a time and mommy and daddy are happy just to be able to hold her for a little while today. 

Margaret is getting the best care and Bill and I continue to be amazed by all of the doctors and nurses at Children's. 

Surgery #1

Praise God! Margaret was taken back for surgery at 8:30 this morning and the actual procedure started at 9:33. We were told to expect everything to be about 4 hours. The surgeon came by a few minutes ago to let us know that everything went great. Margaret's pulmonary arteries looked better than he anticipated and the procedure went smoothly. He is optimistic about the arteries growing stronger together and it looks like the next thing would be to monitor their growth and blood flow, especially the right side.
We are anxiously waiting to get the "go ahead" to go back to her room and see her. Thank you all so much for the love and continued prayers for our sweet little Margaret. She is officially 1 week old today! She is a little fighter and we couldn't be more proud of her! 😍❤️💕❤️💕

We are so grateful for the Children's hospital and how well we are all being taken care of including the Ronald McDonald house. What a blessing to live here and have access to such amazing doctors, surgeons, nurses, specialists, etc.

Movin' on up!

Moving on up...to a room with a view! Margaret is scheduled to have her first heart surgery Thursday morning. Margaret is a tough cookie and she is our little hero. Please keep her (and us!) in your thoughts and prayers as well as her team of nurses, doctors and surgeon. 
It's going to be a long few days and even longer recovery period but we have faith and will get through it all together as a family.

It's a GIRL!

Friends! 

Margaret Susan Menigo

made her grand entrance into our lives on

January 5th

bright and early at 1:20 am measuring a whopping 6lbs 15oz. and just over 20 inches long. 

We are completely smitten and if we could love her any more, our hearts would burst! 

Margaret has a heart condition that is being closely monitored by the wonderful doctors and nurses at Children’s and we feel extremely blessed to have the resources that we have available to us, especially the NICU team. Please keep this cutie in your prayers and we will update as we are able. 

THANK YOU to everyone who has already been texting/calling/messaging/etc. and for being so patient with our lack of updates - we are still taking it all in and reading the baby manual