Monday, March 7, 2011

The Rollercoaster Begins

This week was about spending as much time with our babies as possible. It was so much easier when I was still on the Mother/Baby unit and could just walk down the hall to see them! Sean took the week off of work, so we made the most of that opportunity by practically living at the NICU.

It’s referred to as “the NICU rollercoaster” by parents and medical staff, and that is probably the best description for it. It’s amazing how quickly things in the NICU can ricochet back and forth between wonderful and upsetting. Over the past few days, we have experienced both. I’ve cried so much my eyes feel like they have sand in them. Some were tears of happiness but most were tears of frustration. Let’s start with the happy things:

The nurses let us start Kangaroo Care with our kids! Kangaroo Care involves skin-to-skin contact between us and our babies. Sean and I either wear button-down shirts or shirts with lots of give in the neckline to make it easier for the nurses to put the babies on our chests. On Thursday night, eight days after they were born, I finally got to hold Ellie for the first time and Sean got to hold Caleb for the first time. We couldn’t have been more thrilled (I cried because I was so excited!) when they told us that we were going to get to do that! We have been doing something called “hand containment” since they were born (it’s where you rest one hand on the top of their head and the other on their butt to simulate the warm, enclosed space they were used to in the womb). Up until Thursday night, we hadn’t held any of them yet because they weren’t stable enough to move out of the isolettes for any length of time. Now that they are stable, they can only be held by one parent per day, and when the nurses move them, they want us to be able to hold them for at least an hour because it is so exhausting for the babies. There are also only certain times that they can be moved, so Sean and I have to make sure that we are there during one of those times. Unfortunately, we won’t get to hold them every day as Kangaroo Care is contingent on how well they are doing, but when we do get to, it’s awesome! It has some wonderful health benefits for the babies including: lowering their stress level, causing them to sleep more deeply and more restfully, calming them, and allowing them to bond with us. They grow much better with Kangaroo Care. The majority of Friday, Saturday, and Sunday were spent holding whichever baby was up for it, and Sean and I were so happy to have each held every baby by 8pm last night.

It’s not that we didn’t feel like parents before, but holding our babies made it real. :-)

Daddy and Mommy holding Caleb for the first time.


Daddy and Mommy holding Abby for the first time.


Daddy and Mommy holding Elijah for the first time.


Daddy and Mommy holding Ellie for the first time.


Update on the babies:

Caleb: He is doing well, but is pretty much just riding his ventilator. As the nurse put it yesterday, “He is such a good boy. He does exactly what we ask him to do, but doesn’t really try to go beyond that.” The doctors are continuing to try to wean him off of the ventilator to give him a chance to try the CPAP. Feeding wise, he is continuing to digest more breast milk and they are pulling less residual milk out of his belly when they check him before every feeding. Right now, they feed the babies by using a syringe to push the breast milk through a feeding tube into their stomachs. They like for the babies to digest at least half of it by their next feeding.

Abby: Her feedings are still being increased, and her blood gases are continuing to improve, which is good news! They check the blood gas on each baby at least once per day and on some babies, multiple times per day. The blood gas is the concentration of oxygen and carbon dioxide in their blood. If the gas levels aren’t good, they adjust the settings on the babies to try to balance it back out. The really good news about Abby is that her PDA has closed! They cardiologist came to do another heart echo on her on Friday and she couldn’t find the opening behind her heart anymore. There is a chance that it can reopen, but it is closed for now. Abby is still on her ventilator, and back on the phototherapy light because her bilirubin crept back up. It also looks like she will get another blood transfusion in the next day or two.

Elijah: He was re-intubated with a ventilator a few days ago as he just tired out on the CPAP. The truth is that they are on the little side to be breathing on a CPAP, so they are giving him a few days and then will try to extubate him again. Last night, they decreased his vent settings to encourage him to breath a bit more on his own. He is continuing to get more milk and his residuals are decreasing as well. He is back on phototherapy for his bilirubin again, but other than that, he is trucking right along. Right now, the boys are doing better than the girls.

Ellie: I hardly know where to start with our little girl. In terms of her day-to-day, right-now health, she is doing okay. She was on a CPAP for a few days like Elijah, but she tired out as well so is back on her ventilator. She is stable enough to do Kangaroo Care; however, they have found some potential long-term issues that she may have.
1) Her PDA has not closed even with two rounds of the endocine medication. Her hole is very large, and if two rounds of the meds don’t work, a third
round rarely does. Right now, they are watching her closely to see if they will need to do surgery. In fact, the doctors have already notified the OR
that they may be sending a baby down for surgery soon. If her ventilator settings have to be increased or she doesn’t seem to be tolerating her
feedings as well, they will do the surgery. If she continues to improve, tolerates her vent settings being reduced, and her feedings are going well, then
they will just watch it and see if it closes on its own.
2) They have done two head ultrasounds and have found some concerning cysts on the ventricles in her brain. Brains start growing on the outside and
grow inward, and the cysts show that it is possible that her brain did not receive adequate blood supply and nutrition when it started to grow. This
does not officially mean that she is going to have major problems later on, but the doctors have told us that she is now a candidate for cerebral palsy.
There is nothing that they can do to intervene in its progression or fix it. All they can do it continue to monitor her brain to see if the cysts increase in
size or number. Her next head ultrasound is at one month, so Sean and I have to wait another 2 ½ weeks to find out anything new. The doctors did
make sure to tell us that just because there are cysts, it doesn’t mean that there is anything wrong, but they have to tell us what could be a
possibility.

How we are doing: Let’s just say that our prayer life is growing by leaps and bounds. We are on our knees for all of our children, but especially for our Ellie right now. We want her to be able to fully live life and it’s ripping us apart to see her in her isolette on a ventilator with potential major health issues and know that there is absolutely nothing that we can do to help her. Sean is holding himself together pretty well on the outside, but I’m a complete mess…all of the time. I should probably start taking my own Kleenex to the NICU with me so that I don’t completely decimate their supply.

I have really struggled with some major guilt over the last week or so for not being able to carry them longer. I was so uncomfortable, but I would give anything to have had a few more days with them before they came. I keep going over and over everything and wondering if I had done something different, if I could have stretched my pregnancy just a little bit further and spared at least some of them their heart issues, ventilators, etc. It’s hard to fully describe what it does to us as parents to see our children hooked up to so many machines. I guess it’s one of those things that just have to be experienced to be understood, because I didn’t get it when people tried to warn me what we were going to go through in the NICU.

Thankfully, we have a very big God. I can’t imagine watching my family go through this and not having God. We are not even close to being finished with the NICU, and unfortunately, I also know that they could find major health issues will all of our kids, and Ellie’s problems could be confirmed in a way that we’d rather not see. This is the hardest path I have ever had to walk, and I can’t say that I’m enjoying it. I want to take away their pain so much that it literally hurts me. However, Sean and I are growing closer together through this, and we know that God already knows the outcome of everything that is happening. We can’t be with our babies around the clock, but nothing that happens to them or that is discovered in a test is a surprise to Him. It’s a relief for us not to have to carry this by ourselves, because we just aren’t strong enough.

It’s going to be an amazing day when we finally get to bring them home!!

--Posted by Rebecca

21 comments:

  1. Glad you both got to hold everybody!
    Will continue keeping you two and the babies in my thoughts and sending nothing but warm wishes your way!

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  2. Praying hard for all of you, especially little Ellie right now. Let me know if there is anything you need!

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  3. Thank you for taking time to update your rollercoaster life. As a prayer warrior, this helps to pray specifically for each baby and for Mommy and Daddy as well. My heart rejoices with you on the up side and grieves with and cries with you on the low side. But rejoicing always for God is good and His promise to not give you more than you can bear still is in effect. It is a wonderful journey you are on inspite of the jolts. Rest in His love and comfort, let Him "kangaroo" you too.

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  4. Keeping you and your babies in my thoughts. I wish you all strength in getting through all this!

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  5. Just leaving a comment to let you know I am praying. Thank you for sharing your heart with all of us. The pictures with you and Sean holding each of the babies are amazing.

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  6. Since hearing about your family just a few weeks ago, it's amazing how much you all have become part of my waking thoughts and prayers. Every day, I check for news, and when I didn't see an update, I rejoiced and hoped you were spending good time with the babies. I am so glad to hear about your Kangaroo Care time with each of these little folks. You all are constantly in my heart and prayers, and now, I will hold Ellie up even more to my Higher Power. I can only imagine the roller coaster, as I do not have children. But I think you are doing what parents are supposed to do ... the very best you can, while depending on and trusting those who know and love, ranging from yourselves to the nurses and doctors, and mostly to your own Higher Power. Take care of yourselves!

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  7. We are all pulling for everyone. We knew what it was like when our kids were in the NICU so we know what all your going through. Like we said before it is a Rollercoaster of Emotions. There will be lots of up days, some ok, and some not so good. You just hope that everyday is good day and try to keep it together on the not so good days. We know the babies are in excellent hands and the staff will do all they can do to care for them and you two being there to hold and talk to them also helps out alot. We are here for you two if you need a someone to talk to, vent to, or get your minds off of things. You and Stephanie have a lot in common, she did the what if this and what if that the whole time.

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  8. Bless your hearts!!!!! You still have our Care Group at Christ Church of Oronogo in Joplin praying for ALL of you!!!
    Thank you for the updates!

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  9. Continuing to pray for your family! We, too, understand what you're going through and are here for you if need. All the emotions you described are right on for experience quads in the NICU! We have two older kids and couldn't spend as much time in the NICU. My husband and I made sure to get there at least once a days whether it was together or separate and we couldn't always hold all the babies in each visit. Our Eli and Ellie had the hardest time. Although they went to just about 32 weeks, we still had a lot of ups and downs. It brought my husband and I so much closer and any trial we've faced seems to as well as to the Lord. It's so great you are blogging such detail as later down the road it will be hard to remember. I wish I would have spent a little more time in recording things, but it was tough juggling home time with the big kids and NICU time with the quads. Prayers will continue- You're doing great and everything you're experiencing is totally normal! Sending you quad love! Kami

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  10. It's very apparent in those pics that you are very happy to hold those tiny love-bundles! As a person living with lifelong CP for almost 6 decades, I can tell you, Rebecca, I believe my challenges made me strong enough to survive, and God has been right there to encourage me to never ever quit. I have a wonderful mother who treats me as whole and complete, and a father who, in his way, urges me to be more than I might be. I still count my quest to ride a two-wheeler with no training wheels (at 12 years old) my greatest achievement so far. Little Ellie is who God has made her to be, and I pray that she overcomes and exceeds all our expectations! Even though they are separate, with individual personalities, the quads are all perfect in God's signt, and I know you will be given the gifts you need to care for each one, at the time you need it! Has Tommy gotten the nameplate made for the Ishum pew yet? (LOL, just kidding!)

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  11. Thankfully, our God of the Universe has Caleb, Abby, Eli and little Ellie in the palm of His mighty hand. So many people all over the world are praying for each one of you. I love you,
    Mama

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  12. We are praying for you. I'm sure the hospital will be able to support your kleenex habit, after all it will all be a distant memory. The hospital will be telling you soon that your kids are using all the burb cloths and they are in short supply! Hang in there mama, you're doing great....daddy too. May god bless your family with many happy memories to come.
    Congrats on the beautiful babies.
    Sara, Brian, Andrew and quads Maddox, Parker, Emma, and Jack

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  13. Praying for you and your family. I remember how hard it was having our quads in the NICU (ours were born basically at the same gestation as yours I think ... ours were 28w0d). I understand your fears and worries and your excitement. My thoughts and prayers are with you! Congratulations!!

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  14. Know that you have the prayers and support of all your fellow quad families out there. We know what you are going through and can relate more than most. My family and I are praying for your family.

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  15. I just found your blog from the quad mama's and wanted to leave you a note of encouragement! The NICU journey is so tough especially with multiples, one could be doing great and another going through a rough time while you are trying to recover and take care of yourself as well! I had my quads at 23w1d and it broke (and still breaks) my heart knowing all they are going through because of how early they came. I analyzed everything with my pregnancy and still do sometimes but know no matter what could've been, God has picked you and your husband especially to be parents of these miracles! Take joy in whatever you can to keep you going! Eventually they'll be "feeders and growers" and much of the stress with just be joy! Praying for you and your family constantly!

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  16. Hey guys! So glad to see they are taking leaps off of the vent and kangrooing - YAY! We will be keeping your lil' ones in our prayers, especially baby Ellie, and hoping you have more highs than lows in this rollercoaster ride.

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  17. LOVE your smile while you're holding Abby :-) Its precious... we will cont to keep you all in our prayers... esp little Ellie!

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  18. Thank you for sharing with us. I so love getting your updates and pictures. I so appreciate your willingness to open you lives to the world and share your journey, not only in words, but pictures too. Just want to put in our two cents worth of prayers and well wishes.
    Loving and praying for all of you!

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  19. Lots of prayers going out for your little miracles. The rollercoaster is never fun but know there are many who have shared your experience and we are all here to lend an ear anytime. The pictures are fabulous and I can't tell you how much I miss Kangaroo Care!

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  20. Danielle HoladayMarch 9, 2011 at 4:38 PM

    Just wanted you to know that we had our quads at 26 1/2 weeks and they just turned 5 months old. Your post brought back a FLOOD of memories to me! After spending 2 1/2 months in the hospital, know that this is all they are... distant memories! Hang in there, sister!! Praying for you and your family. I'm here if you need anything. Will be praying for you and your precious miracles, but also be confident that they are doing INCREDIBLY well!! We faced many of the same potential problems regarding PDA (all of which 3 of mine still have, but are doing just fine with) as well as the CP possibility, too. The rollercoaster ride isn't fun, but know that you're not alone!!

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  21. Sean and Becca,

    Thank you so much for sharing this with us! I look forward to the e-mail coming so I can see what has been doing on with the babies. I keep all of you in my prayers. I so love the pictures of the quads. I think babies are the most precious gift gives us other that salvation.

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