All the Specialists Part I: NICU Doctors and a Lactation Consultant

Although we found ourselves unexpectedly landed in the hospital when Jude was just a day old, it was surprisingly a blessing. Jude did indeed require oxygen for the first full month of life and for 2 more months while sleeping. But I was so new to this whole new world we were entering so I didn't know what to expect. I did know that it was common for individuals with down syndrome to have heart defects so I was thankful that Jude seemed to be doing well. So the hospital stay was a blessing because we got to see all the specialists within a matter of days with them all coming to us:

NICU doctors
Lactation Consultant
Cardiologist
Physiatrist
Geneticist
Pulmonologist

The first NICU doctor we saw in the ER was AMAZING. He told us that the thing Jude needed most was to be with mom, on mom, and nursing as much as possible. I'll be honest I was a hot mess walking into the ER, a deer in headlights at best. Thank God for a husband who was sober minded and on a mission to make informed decisions for our son's care because I'm sure I would've agreed to anything. We soon realized a lot of the "hospital rules" were mere "suggestions" that if parents pushed back at all the nurses were  (USUALLY) happy to accommodate the alternate requests. Funny story, since Jude was born at home he was "contaminated" unlike the hospital born children and was not allowed in the NICU! We were in a bit of shock with this information but soon learned how lucky we were, we were placed on a regular floor in our own room with a bed for me and cradle for Jude! The NICU doctor day 2 said to me within the first 5 minutes that we should do an NG tube (A nasogastric tube is a narrow bore tube passed into the stomach via the nose) to feed Jude instead of, or as well as nursing. He said that "children with Down Syndrome have a hard time breastfeeding and usually need some type of feeding tube". While, yes, some children do require it, he didn't even give Jude a chance! But since he was the expert I was feeling like that is what I should definitely do! The lactation consultant that I had requested came by my room right after we spoke with him and she was SO encouraging! She helped me with Jude's latch and other helpful tips on how to get milk to him more efficiently. She gave me the confidence I needed to make a plan with the NICU doctor to set parameters before jumping straight to an NG tube. We decided to weigh him after feedings to see how much he was getting, count & weigh diapers, and keep an eye on his oxygen levels while nursing. Jude never had a feeding tube and that lactation consultant was in my room every day at least once until we left. She was a God send and I'm thankful for her! If breastfeeding didn't work out and a feeding tube was really what Jude required then I would have been fine with it. But I wanted to give him a chance, I wanted the bonding experience, and everyone had been telling me that nursing would be wonderful for oral motor development that would be so great for speech later on. I was not going to give up...after a little nudge from the lactation consultant. So a few lessons learned, baby's with down syndrome receive nutrition all sorts of ways, one to not be excluded based on diagnosis alone: breastfeeding!  And if you want something for you or your child at a hospital, speak up! They're just going through routine unless otherwise informed. More on specialists tomorrow or whatever day I get to it ;) 

First Impressions

I want to share our experience of medical professionals and close family in regards to Jude's diagnosis. People say first impressions are everything and I can say that our first impression of Down Syndrome have shaped our expectations for Jude in a positive way.

Within the first hour of having Jude I knew he had Down Syndrome. I waited for the midwife to confirm my suspicions, and she did. But you know what else she did? She finished the newborn exam, weighed and measured him, and wrapped him up and handed him to me. They finished packing up their things and gave me my final instructions for newborn care, the same instructions I received when Faith was born. I remember sitting there holding him and thinking, "So, what else? What extra things does he need? What should I expect from him?" And soon they left and I realized, he needed the same exact things as his sister and he would do the same things she did. I wasn't told on the day he was born all the things he wouldn't do, I was told what he would do. I think this was such an incredible gift for the way I viewed, accepted, loved, and parented my son. Now, I also am very thankful for his health I do realize that there are those born with down syndrome who have heart defects or other medical issues that need immediate attention and extra care (and honestly, there are  children born every day without any kind of syndrome who have medical issues and need extra care). My midwife also was so kind when she came back the next day, she held him and told me how cute he was then looked at him and then at me, and said "he's going to be just fine." Do I think my midwife has a crystal ball and can see into the future? No. But I do know that words are powerful and my midwife used her words to encourage us in a way that set my mind on things above, looking to Jesus so I could in turn love my son just the way he was.

We took Jude to the pediatrician the next morning to get his opinion, he agreed that Jude had the markers for Down Syndrome and suggested a genetic test to be sure. But then he spent time with us and told us a story of a man with down syndrome that had an average IQ. He was also encouraging and uplifting, pointing us towards the positive. No one told us what Jude wasn't going to do but rather encouraged us to give him every opportunity to accomplish whatever he wants in this life.

We also told our closest friends and family of our suspicions that he likely had Down Syndrome. I remember my mom telling me that she told 2 of my brothers in person that night he was born. How did they respond? (I wanted to know!) They shrugged their shoulders and said "oh I thought you were going to tell us something really bad! He'll be fine!" While some might interpret that as being insensitive or not grasping the seriousness of "the situation", that's wasn't it at all! They were confident in our ability to parent Jude and they don't value people based on their genetic make up, neither should we.

Why is this so important? Because these first impressions from people built on the foundations of how we were already processing this diagnosis. We were confident in God's sovereign plan and now were set on a trajectory to have high expectations from our son.

What is Down Syndrome? And who gave it to my son?

<--Jude's actual chromosomes!

From The National Down Syndrome Society full explaination:

http://www.ndss.org/Down-Syndrome/What-Is-Down-Syndrome/

"In every cell in the human body there is a nucleus, where genetic material is stored in genes.  Genes carry the codes responsible for all of our inherited traits and are grouped along rod-like structures called chromosomes.  Typically, the nucleus of each cell contains 23 pairs of chromosomes, half of which are inherited from each parent. Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21..."

 "Most cases are sporadic - chance - events."

And that is where I disagree. God knit Jude together in my womb just the way he is, extra chromosomes and all. I understand that all the medical community may mean by that is that it is not hereditary and it just happened. But it is important that I understand that an all powerful, all mighty, all knowing God made Jude exactly as He is because He is good and He is working all things together for my good. (Romans 8:28) So I had a choice when Jude was born and the diagnosis was given, rejoice in this good gift that the Lord so graciously gave me or give in to self-pity and wallow in vanity. I'd like to think that I always choose the first, rejoicing. That's not to say that there aren't days of self-pity but I know on "bad down syndrome days" (which are fewer and far between now) that I need to "fix my eyes on Jesus, the author and perfecter of faith, who for the joy set before Him endured the cross, despising the shame, and has sat down at the right hand of the throne of God." (Hebrews 12:2) Jesus who was PERFECT died for me (and for Jude!) if anyone has something to complain about its the injustice of the crucifixion of Christ who NEVER sinned. The fact that God is upholding me and my family by the word of his power this very instant is more than I deserve. So, while it was important for me to get my heart right about the whole situation, we also prayed that God would be merciful and heal Jude of the effects of those extra chromosomes. And God has answered and continues to answer that prayer, I can't wait to share with you how far he has come in these almost 3 years!

Journey to Motherhood Part III: "Extra" Blessings

Journey to Motherhood Part I: Infertility

Journey to Motherhood Part II: Contentment

Then December 15^th rolled around and labor began (I actually told my husband when we moved into our house on November 11^th to be ready for baby December 15^th, I didn’t want to be caught off guard or unprepared even though our due date was January 3^rd). On the morning of December 16^th, our baby boy was born! I immediately thought that he looked like a “Jude” (a name we had previously discussed but not settled on) and he looked just like his sister did when she was born, except some “minor” details. ;) 

Jude needed a little bit of oxygen after he was born, which they were able to give him while I held him. I wasn’t worried though, he was in fact just a few days past 37 weeks. I held him and loved him! His birth was completely different from his sister’s birth and my attachment with him was immediate (something I did not experience my first time). I was anxious for Faith to meet her brother, we moved out of the birthing tub and onto the bed and she came in shortly after. She was so sweet, she was very gentle and seemed to be very aware that the baby we discussed for so many months was finally here! We then moved to my bathroom so baby and I could take a nice, warm herb bath (oh the joys of homebirth!). Once in the tub and holding my baby on my legs, he looked up at me for the first time opening his eyes. They were almond shaped, like I had seen them before, and while not wanting to admit it to myself I knew I had, every person with Down’s syndrome I had ever seen had those eyes. There were some other features that led me to the same conclusion: 

My son has Down’s syndrome.   

Here are my next thoughts in order:

Oh praise the Lord! We aren’t rushing to the hospital! His heart seems to be working- this is a great sign! I know there can be a lot of medical problems and I’m so glad he’s doing okay. 

I wish every mom could experience this moment with me. There is nothing wrong with him! Nothing! Yeah he has 3 copies of the 21^st chromosome but he’s a baby who needs to be nursed and loved and swaddled-this doesn’t change anything about how I will treat him as my son!

Oh my goodness, I know the statistics for aborting a baby with suspected Trisomy 21 (Down Syndrome) is exceptionally high (some studies say up to 67%, some say as high as 92% of baby’s diagnosis in the womb are aborted) oh I wish everyone could share this moment with me. I love him even more! He’s perfect!

Every good thing given and every perfect gift is from above, coming down from the Father of lights, with whom there is no variation or shifting shadow. James 1:17 NASB

And I remembered my words almost 5 years earlier,

“I want God to be sovereign over my womb”

How merciful and gracious is our God! He reminded me of my trust in Him, when at the time of my words I thought it was whether we were going to have 20 children or not! I’ve learned it has meant infinitely more. It means that He is in control and that I trust His sovereignty of when He chooses to close or open my womb, whether He chooses to give me life or miscarriage, and what that life will look like, my “perfect” child or God’s perfect gift disguised in what the world calls Down’s Syndrome. (Right now, as I type he is laughing to himself oh what pure joy!) 

I chose not to say anything to my husband who was sitting in the bathroom with me. I didn’t think he would handle it well coming from me. After all, I still was hanging on to the chance that he didn’t have it. And let’s be honest, I didn’t really want to be the mom who said my son looked like he had Down’s syndrome and then didn’t have it. So I was looking to my midwife to confirm or ease my suspicions. 

I nervously sat in my bed while the midwives did the newborn exam at my feet. My husband had run downstairs to help our daughter with something. Stacey was there and part of me wishes no one was there so I could just hide it, I could pretend that he was “genetically normal” and move on with life. My wonderfully skilled midwife began saying she wanted us to go to the pediatrician the next day (usually you go after a week or 2) and started pointing out some physical features. I asked her to hold on and to get Wes. She continued with the physical features (that I didn’t want to hear) and wanted us to get him checked out. She wouldn’t say “Down’s syndrome” though. I said, “So what do you think all those things are an indication of?” (I suspected in her experience parents do much better when they see something in the child versus being completely caught off guard when someone else tells them information which I knew was exactly what was about to happen to my dear husband). Somewhere in there I was able to say, “Down’s syndrome?” to which she confirmed and then the rest was kind of a blur. Wes didn’t say much and neither did I. No one was crying and I didn’t want anyone to see me cry because I thought they would think that I didn’t want my baby. So I held it in. But secretly I was thinking (and remember at this point I knew close to ZERO about Down’s syndrome),

Will he get married? 

Will he ever live on his own?

Is he going to live with us forever?

What are people going to think of him? Of us?

What are we going to do? Are the next few years going to be filled with therapy and doctor appointments? 

I don’t want him to look different, everyone is going to treat him different, he’s not going to have any friends!

He’s probably not ever going to ________ (fill in the blank with any absurd thing that only 1% or less of the population actually accomplishes anyway)

And I was also thinking

What an amazing gift

I know God has so many plans for us and He is working all things together for my good.

I have the opportunity to love this little boy and raise him in the fear and admonition of the Lord.

I am being so vain! I didn’t realize how much in me was so selfish, I had no idea I had such worldly aspirations for my children! Lord, help me!

And He did. In the form of Jude’s name. We discussed this name early in pregnancy because Wes had been memorizing the book of Jude: 

“Jude, a slave of Jesus Christ...” Jude 1:1 NASB

Remember, I already thought he looked like a “Jude” right after he was born and now that I knew he has Down’s syndrome and was struggling with thoughts of Jude not being who I wanted him to be (side note: are we supposed to act super disappointed when our “typical” children don’t “turn out” the way we wished? Are we supposed to have a melt down on their 20^th birthday if they aren’t on the track we dreamt up 20 years prior??!!) I then realized, even if Jude would more than likely never play professional baseball, be a neurosurgeon, or an astronaut I knew God could do one thing in Jude, 

Make him a slave of Jesus Christ.

All the other thoughts and concerns seemed to melt away when God grasped my heart with this truth. I then repented over my worldly dreams for my daughter too and prayed that God would hold fast in me this desire for my children to be above all else: a slave of Jesus Christ. 

Journey to Motherhood Part II: Contentment

Journey to Motherhood Part I: Infertility

I was beginning to get tempted by those fertility drugs mentioned earlier, we were approaching 2 years of “trying” and I thought that getting pregnant would help with all the sin in my heart in regard to others. Then God in His infinite mercy had me meet Cara at a seminary wives meeting. She was there to talk about her experience with infertility. She was there to talk to me. She shared her story of being a seminary wife, (surrounded by all these fertile women) and year and year would go by and no baby for them. Cara describe a baby shower that she was invited to while in the throes of having no news of pregnancy herself. The hostess decided everyone should go around the room, introduce themselves and tell how many children they had and ages. Well it got to Cara, “Hi my name is Cara.” The end. As she drove home from the baby shower in tears she called out to God telling Him how alone she felt there, she was the only woman who had no children. She was reminded, 

“I was alone on the cross bearing the wrath for your sin, my own Father could not look at me. I too, know what it is like to be alone.” 

God came down in the flesh to die for me, to give Himself for me, a pure spotless Lamb. 

“For we do not have a high priest who cannot sympathize with our weaknesses, but One who has been tempted in all things as we are, yet without sin.” Hebrews 4:15 NASB

I’m concerned about a baby? He rescued me from death and hell! Hallelujah!  He didn’t throw a pity party. He didn’t wallow in bitterness. He said, “No one has taken it away from Me, but I lay it down on My own initiative.” John 10:18 He willingly laid down His perfect life for His bride, the church, to bring us to God. Anything we label as “good” in this life is just a bonus! 

O taste and see that the Lord is good;
How blessed is the man who takes refuge in Him!
O fear the Lord, you His saints;
For to those who fear Him there is no want.
The young lions do lack and suffer hunger;
But they who seek the Lord shall not be in want of any good thing. Psalm 34:8-10 NASB

Cara went on to ask, “Is Jesus enough?” I really had to wrestle with that question. If I answered honestly that evening my answer would have been a quick “no”. He wasn’t enough. I felt that I deserved more, that I deserved a baby. But the truth was I didn’t even deserve what Jesus had already given me, LIFE in Him! My heart took a sharp turn at this point in the journey. I would then wake up each morning and set my heart to rejoice in my savior and my answer to Him being enough a resounding “yes!” Memory scripture was very helpful during this time of intense battle against my flesh. When self-pity, sadness, or jealousy would creep in I would, 

Lay aside every encumbrance and the sin which so easily entangles me, and run with endurance the race that is set before me, fixing my eyes on Jesus, the author and perfecter of faith, who for the joy set before Him endured the cross, despising the shame, and has sat down at the right hand of the throne of God. (Hebrews 12:1 NASB emphasis added)

It was so freeing to set the gospel before myself daily, I was finally able to rejoice with my friends (and acquaintances!) who were expecting new little blessings. I was also able to really mourn with those going through a loss. My heart was knit so closely with other women who were praying for God to bless their womb and with women who were trusting God to bring them a husband. I felt compassion for the mom who was pregnant again who did not expect it and the house was small and the money was tight. I did not just become more content with our current state of non-pregnancy, I was being conformed into the image of Christ in all aspects of life as I grew closer to Him, knowing Him more, and depending on Him for all things.

(Side note: I struggle with even using the word “infertility” because those of us who are in Christ should never be labeled “infertile”. We have a high calling to make disciples of all nations and teaching them to observe all that Christ has commanded us. Many godly men and women have walked this earth who never marry or have any biological children but have brought many spiritual children into the kingdom of God.)

We eventually saw a naturopathic doctor who prescribed some natural herbs and supplements, diet change, and exercise. I was glad we waited and was comfortable with a natural approach to help encourage my body to do what it was created to do. God had been so merciful to bring me to closer to Him through that time; I would not have it any other way. We saw immediate results with her regiment and within 6 months we were expecting our first baby! Praise God! We were counseled by godly friends (who were already parents) on everything pregnancy, birth, and parenting. It was such a blessing! The first trimester was also a sad time for me because the season of life of struggling and clinging to the Lord for contentment in the midst of Him saying “no” to a baby at that moment had changed. I still needed to rely on Him. I still had to find my contentment in Christ. But it was different. I was sad over the “loss” of closeness and too learned how to transition to a new season of life with the same zeal and reliance on the true and living God.

I was very grateful for the decision 2 years earlier to “let God be sovereign over my womb”. Our baby girl was an easy pregnancy, (except the 1^st trimester morning sickness-but I didn’t care!) a wonderful home birth experience, and a content baby. By the time Faith was 3 months old, we were ready for another one! I assumed we would have to take some of the herbs and supplements as before that are not recommended while breastfeeding so I knew it would be a while until we could try again. 

We found out when our daughter was 16 months old that we were blessed with baby #2! We didn’t take any of the herbs/supplements like before. I confided in a friend that I had the silly thoughts that I might miscarry this baby because it seemed like it was “my turn” in the inevitable after knowing so many friends have miscarriages. But 1^st trimester went by with lots of throw up and weight loss and we entered into 2^nd trimester and saw the baby on the ultrasound, everything looked great and it was a BOY! But still there was an uneasiness that something was “off”. 

I pushed back my intuition with all the wonderful information we received at every appointment, everything looked great! 

Journey to Motherhood Part III: "Extra" Blessings

Journey to Motherhood Part I

At almost exactly one year after God called me out of darkness and into His marvelous light, I married the man of my dreams. Wes and I were young, in love, and had faith that God was going to provide for everything in between (and He has). I was a new believer and he was young in the faith as well. I had taken birth control for the last 7 years. It seemed like it was the thing to do if your period was a little off and your cramps were excruciating. Soon after we were married Wes mentioned to me getting off the pill and letting God be in control over my womb. He showed me this passage in Genesis:

God blessed them; and God said to them, “Be fruitful and multiply, and fill the earth, and subdue it; and rule over the fish of the sea and over the birds of the sky and over every living thing that moves on the earth.”(Genesis 1:28)

He pointed out that the command God gave to them was a blessing! And this is one of the things God intended for marriage from the beginning, to be fruitful with little blessings. 

I freaked out a little. 

All I wanted growing up was to be a wife and mom. I seriously only went to college to find my husband and maybe have a career when all the kids were grown and out of the house! (yes, I am admitting that) But now that my husband was telling me, “yes, let’s have children” I was caught up with thoughts, of 

“but we don’t have enough money” 

“let’s wait to buy a house”

“let’s travel”...

and all the other thoughts of worldly achievements. Wes did not mention it again and took the issue to the Lord in prayer. After a couple weeks I started feel convicted. God started showing me that my desires were temporary and that I did not believe Him when He said that Children are a gift from Him and that the fruit of the womb is a reward. (Ps 127:3) So I came home from work one day (which Wes says he remembers ever so clearly) and said to him,

“I want God to be sovereign over my womb”.

I had no idea what these words spoken 5 years ago would actually mean to me now. God has used these 9 words to shape the way I have viewed the last 5 years and have carried me through a lot of refining moments. My husband rejoiced, he was thankful for the decision to be open to having children but was more thankful for the change in my heart to desire to be obedient to the will of God. After this decision, I had a peace knowing that I was being obedient to what I felt the Lord was calling me to. It wasn’t scary and all of the things on the “let’s do these things first” list didn’t matter anymore. I was excited- we were probably going to have a baby soon!

WRONG. Soon is such a relative term anyway, right?

A couple of months went by without getting pregnant, then the whole summer was gone and still nothing. I didn’t think anything of it; I was actually content and was enjoying getting to know my husband more (We married after knowing each other 8 months). Then we decided for Wes to finish school and that meant moving from Tennessee to Minnesota with less than 1 months notice with no jobs and no place to live. Crazy. I know. That’s pretty much how we do things in the Melton household. It was exciting and I was relieved that we were not navigating a new phase of life (pregnancy) in a new place with so many unknowns. We felt led to go, we were trusting in God’s timing with children in light of our new found home in Minneapolis. 

Then a year went by. Then another 6 months. 

And we are in school at a college and seminary. Seminary wives have babies. Lots of babies. Not all of them but a lot of them. And then the thoughts start creeping in, “why does she get to be pregnant?”

“I would make a way better mom than her”

“If someone else announces they are pregnant “by accident”. AGAIN. I’m going to lose it”

“We would raise our children in the fear and instruction of the Lord, why does God keep giving all these other people babies and not us?!”

Answer: Because He loves me, He loves Wes and He cares more about our holiness than our happiness. And I was prideful and hurt by others blessings instead of humbling myself and rejoicing with them.

During that time I happened to read a pamphlet on bitterness it included the “sweet water, bitter water” analogy:

If you’re holding a cup of sweet water and someone bumps into you and spills your cup than you will spill out sweet water. However, if you have bitter water in your cup and someone bumps into you than bitter water is what will spill out. 

Point: The person “bumping” into you isn’t determining what is coming out of your cup! This was so life changing for me. No one was making me bitter or jealous, that was already inside of me. Their news or story or comment was just making what was already there come out. It was so helpful, God poured out His grace and truth in my life and made me deal with these feelings for what they are: SIN. 

Then, our OB/GYN recommended that we take fertility drugs. Here we were at another crossroads. But those words that I said only a year and a half before came back:

“I want God to be sovereign over my womb”

We did not feel comfortable taking any of the fertility medication. I felt that God had a purpose in the “infertility” He was allowing us to experience. I wanted to press in to know the Lord more and to follow Him and to seek His counsel about what we should do. I was in a small group of women, some married with children and some were single (desiring a husband), and we would pray together. It was amazing how God knit our hearts together through prayer and sharing our desires for being godly wives and moms while yet being content in Christ in the current circumstance of “infertility”. I was able to share in the heartache of yearning for something that God says is good, a husband or children, with other women that I would not have otherwise been able to know and understand those strong desires. 

There were still moments of bitterness and jealousy that would come spilling out when another facebook announcement would pop up on my screen. I would have to walk away and just pray and give it over to the Lord. “Lord, I know you love me but I am really struggling with jealousy and bitterness toward so-and-so who just announced they are pregnant. Help me to be happy for them and rejoice in this new little life you’ve given them.” He would help! It was so freeing to take this constant battle to the Lord. 

Then, one of my best friends called, “I’m pregnant”, I was just pulling up to our house. My stomach dropped, I almost burst into tears right then on the phone but I pulled it together and asked questions instead. “Oh, I didn’t realize y’all were trying?” (Thinking: “Lord! They have been on birth control and NOT trusting you! How could you give them a baby first!?”) She responds, “it was our first month trying”. Ok. Just stab me, right here in my gut, seriously? I sound all happy on the phone and make up an excuse to get off the phone as quickly as possible. I crumble on our bedroom floor and sob, bitter water spills everywhere. My poor husband, what is he supposed to do or say? He can’t say anything right or do anything right, I’m already spewing bitter water, that’s all that would come out. 

The truth was I wanted to be god, or at least I wanted to be my own god that did everything I wanted, when I wanted it and how I wanted it. Who was I to determine how or if they were trusting the Lord? She didn’t make me feel the way I was, that was already inside me and I need to deal with my own sin with God. Then, she calls me again a few weeks later, “we lost the baby”. I knew in my head what the right response was, to feel sad and to mourn with those who mourn but where were my tears now? I was so quick to crumble and cry at my pitiful infertility but where was the compassion and hurt when one of my very best friends will never meet the baby I was so jealous over. I felt sick to my stomach. Sin destroys life, steals joy, and delights in destruction. I wanted nothing to do with this sin that was making me a person that was more upset at my own misery than being compassionate for a friend’s loss.