Madeline || She’s HOME

 

I still can hardly believe it! But after an unexpected turn of events, Madeline is home!! We are finally all together as a family of FIVE and it is amazing. 

More later! Thankyou all for your prayer and support! 

With love, Chels for us all

Madeline || Update #10

Today is the 50th day of Madeline’s NICU stay, and yesterday she was seven weeks old! It seems fitting that with those milestones, there should be some happy news, and there was. I came in yesterday morning to discover her feeding tube gone! The initial reason for its removal was trouble shooting for some of her reflux/spell issues, to see if the removal might help that. The timing works out well, though, as she has been taking more and more bottles and getting less and less from the feeding tube. This should solidify that transition. 

In weight, Madeline is now up to 6lbs 7oz. Just a few more ounces and she will be twice her birth weight which is wild to me! As mentioned above, she continues to progress with her bottles. I am giving nursing a bit of a back seat for the time being, as she has still been struggling with that. The main goal currently is to just get her home, so we are going with whatever method seems to bring that goal the soonest. She is still having spells, as she sleeps, when her heart rate drops. They aren’t major but she has to have five days of no spells, and complete eating on her own, before she can go home. If she can continue with eating well, she should be permanently  done with the feeding tube, which takes care of the second item. 

Our prayer requests are for the spells to stop, and for her red blood cell count to improve. It hasn’t been climbing like it should and we are really hoping that it will improve. It isn’t dangerous at this point, but we are hoping to avoid a transfusion.

Thankyou once again for your prayers and love!

Have a wonderful weekend!

-Chels

Madeline || Update #9

Our little pumpkin is growing and flourishing over here! She still has a long ways to go but she is definitely continuing on the upward climb of progress and we are so grateful! 

They removed her nasal cannula Sunday morning so she has been off her oxygen since then and done great overall.We are so hoping and praying that she can continue to have minimal spells and not have to go back on that. So far, so good. 

In the weight department, she is gaining and growing so well. She weighed 5lb 140z last night! Considering that at her lowest point five weeks ago she was 3lb 1oz, this is a pretty significant amount amount of growing! She’s got a little double chin and her cheeks are getting rounder, which is so fun. The preemie outfits have been outgrown and this week she's wearing mostly newborn size sleepers.

Madeline has been making good progress with her bottles. Her first feeding with a bottle she only could take 11ml, and then last week she took her first full feeding in a bottle, 57ml! On Sunday she did two full bottle feedings, back to back, which was incredible! Nursing hasn’t gone well but I didn’t expect it would. Both of our boys had nursing issues (tongue/lip ties) and I am quite confidant Madeline has a tongue tie as well. Plus, she is a preemie, and from what we’ve heard, it always takes a long time for preemies to learn how to nurse anyways, other issues aside. She’ll latch and suck occasionally, and some “sessions” are better than others, but overall it isn’t anything consistent or even close to a feeding. 

The times she is awake and alert are so so sweet. She still mostly sleeps but there are little bitty pockets of awake time. She has started making eye contact and sometimes wakes up in the morning when I walk into her room and start talking to her. Today she gave me her first smile and I about melted into a puddle! It was beyond precious!

The question we commonly get from people is “so how soon can she go home?” From the very beginning we have intentionally prepared ourselves for her to be here at least until her due date, September 14th. So that is what I tell myself. Technically of course it could be later or earlier. We just really don’t know. She has to go five days without any spells and then obviously she has to be taking all of her feedings on her own. Once those two things happen, we can take her home. With still having one or two spells a day and only typically doing one or two of her eight daily feedings on her own, that gives a little perspective of hurdles that are still ahead of her. 

She has made a lot of progress though and we are focusing on that. We know that every day we get closer and closer to taking her home and we are grateful that she is stable and growing!

Did I mention that double chin?? 😍

She always likes to put her hands up above or beside her head when I am doing skin to skin with her, and it is the cutest thing!

Have a blessed Thursday, everyone, and thanks again for your prayers, comments, and support!

-Chels

Madeline’s First Photo Shoot || Update #8

I received this adorable preemie outfit from a friend a few weeks ago, and last week I put it on Madeline, used a pillow and the privacy curtain as background, and did a little photo shoot with her with my phone. 

Thought you all might enjoy these. 😍

Afterwards-snuggles with my girl. 💞
 

Madeline || Update #7

(recent picture of Madeline) 

Wow, not sure how it has been so long since I have posted an update on Madeline. Thankyou to those of you who have checked in to see if we are all doing okay. Madeline is well and everything going well overall. The days just kind of blur together; in some ways they seem long and in others short, so I really didn't realize it had been so long since I posted an update. I've actually been adding pictures and text to this post for quite a while, so I have dates with the paragraphs below, and pictures are in order that they were taken. The first few are from the last few days of July, without the nasal cannula, and the rest are since then, with it.

(This was one of Madeline's first "awake and alert" kind of looks!)

(Lil miss is quite dramatic with her yawns =))

(She's got big beautiful blue eyes, just like her brothers!)

Thursday July 29th

Madeline got moved to a crib! Now we don't have to wait for the nurses to get her out for us. We can come and go as we like and get her out anytime, which we are LOVING!

Friday July 30th

Madeline is 4lb 3oz! I've been working on nursing with her with no progress, but I've still been trying. The goal is to get her used to the position/feel/suck/everything. She finally had the first few little drops of my milk into her mouth yesterday and today; the first time she was super dramatic about it and acted like she was drowning. But she also did a little lip smack so I know she wasn’t too mad about it, haha! We are quite far from nursing as she can’t get the sucking figured out; she hasn't latched yet. But she's definitely moving her mouth more which is a sign that she's getting closer to ready. A blessing in disguise is that with the nursing issues I had with both of the boys, I don't expect the process to go perfectly even with a full term baby, let alone a preemie! 

Saturday July 31st

When I came in to the NICU this morning Madeline had been put back on the nasal cannula. (Supplemental oxygen) She has been having a lot of Brady events (slowing of the heart rate) and even though this isn’t really abnormal for her age, still she really needs to have less of those, and so they made the decision for her to go back on the nasal cannula. It makes me sad to have more tubes going again but I am also thankful that she is responding well to the oxygen. She is also getting doses of caffeine to hopefully help.

Sunday August 1st

Her oxygen was bumped up to 100% this morning since her Brady events were still not slowing. She has now only had four Brady's since that was done. (whereas before that she had had around 20 in 24 hours) Even though it's not fun to have her on the nasal cannula again and getting so much oxygen, this is super encouraging that the events are slowing down. She also had labs done again this morning and everything came back clear which was good. Tonight she had her first real bath (she'd had sponge baths before) and she loved it!

Monday August 2nd

Madeline gave her first itty bitty suck today! She didn't extract anything, and it was just a tiny little few sucks, but for a NICU baby and how long/tedious the nursing learning process is, this was a huge step and I am so happy! John and I have been working with her on her paci to get her used to sucking on that and moving her mouth. She has definitely shown more mouth movement and just overall alertness the past few days so that is great progress. She continues to grow---4lb 9oz today!

Thursday August 5th

After much much trying (me trying!) Madeline truly kind of nursed a little bit twice today! She had multiple swallows and many sucks and I cannot believe how strong she is for such a bitty thing! The lactation consultant was very helpful and I really liked her. I overheard her giving the report to the nurse and she was really impressed with Madeline's progress too. It was so incredible to see things start clicking for Maddy-she was even initiating at one point-sticking out her tongue and giving little lunges trying to suck. It was pretty cute. =) 

Sunday August 8th

Madeline had her first true feeding aside from her tube tonight. John gave her a bottle and she worked so hard on it. She was totally wiped out afterwards but she managed to drink 11ml on her own! Up until this point she has had basically everything through her feeding tube. 

They had taken her off oxygen yesterday, but put her back on after she had a cluster of spells this morning. 

Tuesday August 10th (current)

Today Madeline is 5lb 2oz! So thankful that she is gaining good weight! What a praise. She struggled with the bottle today and wasn't that into it. She is still getting feedings through her tube, but we are working on her learning to suck/drink herself, at the beginning of her feeding times, before the nurse hooks up her feeding tube. 

                                                                     Snuggles with my baby girl.

She is starting to get a tiny double chin and it is the cutest thing!

She loves to have her hands up by her face.

First bottle!

All wrapped up and sleeping soundly.

First bath!

Stretching!

There have been some rough things this past week, in spite of the progress. This NICU life isn't easy, no matter how you slice it. We are making it through but the ups and downs are a real thing.

Recently, I was driving back to the apartment after an appointment in Leavenworth. I was listening to "The Lord is My Salvation" by the Gettys, and I cried as this song just ministered to my heart. 

The grace of God has reached for me
And pulled me from the raging sea
And I am safe on this solid ground
The Lord is my salvation

I will not fear when darkness falls
His strength will help me scale these walls
I'll see the dawn of the rising sun
The Lord is my salvation

My hope is hidden in the Lord
He flow'rs each promise of His Word
When winter fades I know spring will come
The Lord is my salvation

In times of waiting, times of need
When I know loss, when I am weak
I know His grace will renew these days
The Lord is my salvation

And when I reach my final day
He will not leave me in the grave
But I will rise, He will call me home
The Lord is my salvation

Who is like the Lord our God?
Strong to save, faithful in love
My debt is paid and the vict'ry won
The Lord is my salvation

The italicized lines just spoke so directly to me and what we were going through. The promises of God's Word. Spring will come. Times of waiting and times of need. His grace will renew these days. He is strong to save and FAITHFUL in love. Amen and amen!

Please pray for us that we would stay focused on Him, that our faith would stay strong, and that Madeline would continue to improve. We would also appreciate prayers for good health for all of us during this time of less sleep and extra stress. 

Thank-you for your prayers, comments, and encouragement!

-Chels

Madeline & All of Us || Update #6

(opening some fun gifts together for baby Madeline)

This update is labeled “Madeline and all of us” because many of you are wondering how the rest of us are doing and what our life looks like now. This post is a bit of an update on that. The pictures and "update" hardly scratch the surface, but I've been trying to write this post for over a week now, and tonight I decided to just go with what I have and post it.

Three weeks ago today our world was turned upside down and we were given the amazing blessing of our tiny daughter! These past twenty-one days have been filled with many emotions, tears, and unknowns as we navigate this new journey of NICU life. The first week especially was filled with some of the hardest and most stressful moments of our lives, as we tried to make sense of everything and struggled through the scary moments of little Madeline’s efforts to stay alive. Statistically we knew that she would likely pull through, but the level of potential complications at this tender age is huge. Plus John had the memories of losing his first niece, which added a whole new level of seriousness to the situation. 

I was officially released from the hospital on Sunday July 11th, and then we boarded here at the hospital until the 14th. During that time my sisters in law and inlaws took care of our boys, and we can never thank them enough. The boys ADORE their aunties and grandparents, and being there with them is the highlight of their little lives. So in spite of obviously missing us, they did so well there and I was so grateful to know they were in such good hands while we were going through some very tough days here! 

On Wednesday, July 14th, we were able to find, rent,  and move into a fully furnished apartment within walking distance of the hospital NICU. We are now all settled in and it is such a blessing to be here. Driving the almost hour one way distance everyday would be worth it and we would totally be doing it if we didn’t have another option, but being able to be within minutes of Madeline AND be under the same roof with our boys has been truly amazing. We are so grateful for the blessing! Our families, churches (my former church in Iowa and our current church here) and local friends have all been incredibly supportive and jumped in to help in more ways than we can count. Meals, cleaning, outings with the boys, gift cards for food, financial gifts, visits, care packages…I can never count all the ways that we are continually supported and blessed here. 

We have been completely blown away by the love and support of our church, family, friends, blog readers, online friends, and people around the world that we haven’t even met! The prayer network for Madeline has been unreal. Thankyou so much for all of you who have commented/emailed/written and told us that you are praying. Not only have you prayed, but you have shared with your friends and families and churches. From just the messages I have received alone, I believe there have been literally thousands and thousands of people interceding for the life of our tiny daughter, and that thought moves me to tears! Truly the family of God is an incredible thing!!

The NICU team has been amazing. Such a blessing in so many ways. The doctors, nurses, and nurse practitioners are competent and caring and we feel very thankful to have our little girl in such good hands. I was really worried about this element of NICU life, to be honest. It wasn’t that I thought the care wouldn’t be good, but, really, what mother in her right mind is excited about leaving her newborn in the care of total strangers? Not this one for sure! And yet seeing the compassion and care of this team has given my heart such peace. I am so grateful for each of them.

Many of you have also asked how we are doing-John, the boys, and I. I will be truthful and say that it hasn’t been easy. It is a GIFT to be able to be with the boys and close to the NICU, but it has also been a ton of change in our regular work, social life, the boys’ routine, etc. My rest time is completely different (almost non existent?) this third time postpartum, than it was with my boys. By the time I pump (8x a day) grab some food, attempt to get a decent nights sleep, spend around 5-6 hours in the NICU, and try to love a little on my husband and boys, the days are gone. Emotionally and physically the past three weeks have been completely draining. Praise the Lord, the one very positive thing is that birthing a 3 pounder is totally different than an 8 pounder, so my physical healing initially has been worlds faster and easier. This also means though that it is super hard to remember to try to take care of myself, since it doesn’t feel like I just had a baby. 

John has been incredible-he also spends hours everyday in the NICU with Madeline and she has her daddy wrapped around her itty bitty fingers. =) He has cared for me and the boys so well and does amazing at knowing all the terms and details of Madeline’s care and exactly what is going on with her at all times. I literally would not be able to do this without him!

Our boys have had their little world dumped upside down too but overall they are doing well. Elliot is teething super hard so we've had some rough days for him. Axton is very in tune with what is going on and the only thing he seemed to not understand at first, is why “baby Madeline and Sue” as he calls her, isn’t at “new house” with us. However, after the first few days he quit asking and now he knows every morning that mommy is leaving for “the NICU” to go be with baby Madeline. His level of understanding and trusting, for a two year old, has seriously surprised me!

We would appreciate prayer as we work to be intentional with loving on and spending time with the boys, spending hours everyday in the NICU with Madeline, and also keeping our marriage and communication strong as a couple. 

One of my sisters in law took this picture the Sunday morning after Madeline was born, and it has been the picture I've been showing the doctors and nurses when they ask about our other kids. When I look at this picture I realize that we truly do have three babies now! With Madeline's early arrival, she and Elliot are just a few weeks away from being Irish twins!

It was so good to be back with my other babies, when we got to bring them down to the "new house" as Axton calls it.

We have been so blessed by the abundance of care packages we have received from friends, family, and strangers alike! The boys loved this little pack of safari animals and they have been hugely entertained by playing with them!

Axton and Elliot were thrilled to go on a special outing with Grandpa and Grandma Maxwell!

Now that we have our own little place near the hospital, we have been able to have company. It looks quite different from our hosting days at our LV house; we let our guests bring the food and watch the boys and help in many different ways as we are coming and going from the NICU. But it has been a joy to have the social interaction and be able to still see friends and family. Meeting cousin Malachi was a huge highlight for the boys and it was personally very healing for me to have a real baby in the house, since my baby can't be here yet.

My favorite guys, on an afternoon back to our "old house".

We have been back to our Leavenworth house a few different times to get things from the house and run errands, and the boys have been thrilled those times to play in the sun in their beloved backyard.

Our first date out after Madeline was born.

Errands for John and Elliot while Axton was at the zoo with Nana and I was in the NICU with Madeline.

The boys adored having Nana come visit for a few days.

Beautiful flowers from my former home church back in Iowa.

John's grandma gifted us with a season pass to the zoo and it has been the perfect place to take the boys (or let friends take them) to let them burn off energy and enjoy the great outdoors.

The boys opening their own little packages from friends.

The boys are always thrilled when any family/friends come to help out and spend time with them! Elliot loves his Auntie Sarah!

And that’s a little current update and recap of some of what has happened these past three weeks. If you aren’t subscribed already and you wish to receive these updates to your inbox, simply “subscribe” to the blog with your email address over on the left hand side. (Or. If viewing on your phone, you can find the subscribe box by clicking “view as web size”) When you subscribe, each update post will be emailed to you.

I'll end with a picture of Little Miss---fast asleep after her snuggles with me the other day!

Thankyou each again for your prayers, love, and support. We appreciate it so much!

-Chels

Madeline || Update #5

 I haven’t given an update on Madeline lately so I wanted to take a minute and share a bit with you all tonight. She is doing so so well. As you can see, the latest outward change for her is that with so many less wires and cords, she can now be dressed in little preemie size onesies! So cute! 

Her red blood cell count is low but that is normal for preemies and the nurse practitioner who was on today said it is of no concern at this point. Madeline is getting my pumped breast milk and vitamin D and iron and doing great with all that. She is up to 3lb 10oz. Without the little stickers on her cheeks now (they came off the other day) I feel like she is just looking more and more like a real baby! 

She loves snuggles and being held, and her daddy and mama are big fans of that too! We have gotten into a bit of a routine that works really well---I hold her everyday from 11am-2pm and then John holds her from 8-11pm. I usually spend from 8:30/9-11am with her as well and then typically one of us is with her from mid afternoon until dinner time. Whichever one of us isn't with her is with the boys. (more on that and our new living situation, soon!) It has been great to get into a bit of a schedule and feel like we at least have a little semblance of a new normal.

We are so thankful for how well she is doing! It is hard to believe that she is already 16 days old!

Today she had both of her little hands up above her head while she was sleeping. So sweet!