NO developmental delays. One word – gratitude.

The boys had their official 9 month appointment but I never posted about it, only about them at 9 months since their appointment was late. Ironically, they will be 10 months in two days. The most important thing that sticks out to me from this appointment is that the boys are on track developmentally and have no delays for being born six weeks early! BLESSING. I follow other preemie mom bloggers who have to face developmental delays for their little one and I know it’s extremely difficult for them..so I can truly see what a blessing this is. Especially because we had a rough beginning. When my boys were born, it was not the typical “baby born, post 3829 pics, take baby home, people come over and love on baby..” My boys faced some complications. Jo-Jo was on CPAP because he was born with some fluid in his lungs and was then sent away to a hospital out of state because the doctors thought he may have Hirschsprung disease…but that was ruled out. When Jo-Jo was in this hospital, M-berry was home with us for a week, only to catch RSV and fight for his life. He spent 10 days intubated on a ventilator and ultimately about three weeks in the hospital (AFTER he was discharged and sent home..he went right back)…without going back to that place, they went through a lot to make their place in this world. To hear the doctor tell us that everything is WONDERFUL is simply amazing. It made me want to cry. Complete joy. So all of that to say this – I do NOT take the fact that at this moment in time they have no developmental delays lightly or for granted. Here are the updates from that appointment:

  • The boys should start eating table foods at this moment. We can bring it in slowly and the doctor wants us to continue to give them baby food as well. I’m excited/nervous about this part. Choking freaks me the heck out. I mean, it would freak out any mom right? Plus, it’s a sign that they’re growing up. I’m not ready for this to happen yet, obvi. lol.
  • Continue to give them water in the sippy cup. Problem…they are not fans of the sippy cup anymore. They were doing okay for awhile, but decided they are over it. They just don’t want it. I’m going to experiment with buying a different type of sippy cup and see if this helps any.
  • M-berry is 18 pounds and is 26.5 inches long. He is a shorty!!! He is in the 24th percentile. This is a good spot for us because he is gaining weight and now there’s not as much as a gap between his weight and his brother’s. Hoorah!
  • Jo-Jo  is 20 pounds and in the 52nd percentile when it comes to weight. He is 27.5 inches long. Seems like he is a little short to me too but we are not the tallest people in the world, so that would explain that!
  • Jo-Jo officially has two teeth at the bottom as well. Micah is getting ready to bust some teeth out but he doesn’t have any yet.
  • They both have big heads, though I don’t remember the measurements or percentile off of the top of my head.
  • We can start “teaching” them to walk.I really don’t want to do this. This means that they will not be babies forever and I’m not sure if my heart can handle that.

Here are the latest pictures my husband took of the boys in our backyard:

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…and this would be my absolute favorite in the universe.

I look at these two and feel so much gratitude. That’s all I can do to explain it. Gratitude. I’m grateful for something that I don’t deserve and did nothing to earn…but they are my boys. Thank you Lord. This journey is such a beautiful one.

 

 

Back in the hospital..again. Not cool.

So Micah’s been dealing with a bad cold for the past few days. Started off as a cough and a typical cold, then wheezing started to develop along with retractions. Since he had such a bad experience with RSV when he was three weeks old, when I called the doctor, they wanted me to bring him in to the ER. I kind of knew that would happen so I wasn’t surprised..but not happy to have to go without my husband.

Ever since Micah’s traumatic experience (which you can read about here), the mere though of the hospital makes me break out into a cold sweat and my skin starts to crawl..or I feel like I’m going to have a panic attack, or hyperventilate..or even faint. I have to say God gave me so much strength today. I took Micah to the ER on my own, all of his baby equipment, maintained a positive attitude and everything. Go me!

Of course I immediately broke down when the first doctor (a resident) came in and told me that he would possibly be transferred to an out of state children’s hospital (the same one he was transferred to when he had RSV) because of his “previous history” and such. My response to her, “Are you kidding me?” No, like really lady..are you kidding? I reminded her that when he had that severe case of RSV he was THREE WEEKS OLD. THREE WEEKS OLD. This time he is five months old, has had colds in the past, has been on Synagis. I know that Synagis doesn’t mean your baby won’t get RSV, but it should help to lessen the severity of it. And the fact that her first thought was, let’s transfer him far away just to be safe..even though he doesn’t have a fever, is eating well, is being a happy little clam…and she didn’t even do the RSV test yet!! REALLY?! Not very sensitive of her. I know her intentions were good, but still. As soon as she said that, I broke down and just cried. I felt it all coming back. The separation of me from my husband and Josiah. How I pretty much lived in another state, by myself, for two weeks…dealt with watching my son fight for every breath and for his life…by myself. Wondered if he was going to make it…and wishing I could trade places with him. It was the scariest experience and most traumatic thing I’ve ever gone through. So she left…another doctor came, one that I liked more. Told me two good things – Micah tested negative for flu and RSV. However, on the flip side, his chest x-ray showed a possible pneumonia? The doctor and radiologist kind of disagreed on it. One thinks it’s there, the other not so much..but they’re going to treat him anyway. So little Micah Berry is in the hospital yet again. My little baby.

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“Dad, why is there a diaper on my hand?”

They put a diaper on there so that he won’t rip out his IV…guess what? He did it anyway. Strong guy. Known for ripping out his IV’s. My hope is that everything will clear up and he will be home by the weekend. Pray with us my fellow bloggers, pray that Micah will heal and be home with us..that Josiah will stay nice and healthy, and that as a family we will maintain our sanity. It’s really hard. My husband has to work in the midst of it all..which means our days are crazy. Today my mother-in-law watched Josiah from 8-4…then our best friends took over from 4-8..then I took over. Tomorrow I will watch him from until 2:30…pick up my husband, take him to work (the joys of sharing one car) and take over hospital duty until 10:30..pick up my husband…take him to the hospital..come back home..relieve my aunt..who will have relieved my mother-in-law. Crazy, crazy, crazy. I will keep you posted. BLAST YOU COLD AND FLU SEASON. BLAST YOU.

Reunited! Micah is home.

Micah is finally home. He came home on Saturday and we have been enjoying our time as a family ever since.

I want to continue to thank every single person who has kept my family and my little boys in prayer. THANK YOU!

There is no better feeling than being all together. But man, this whole experience really did a number on me. Yesterday I just broke down and sobbed for awhile as my husband consoled me. I never ever ever want to go through what we went through again. I fight fear daily as it tries to grip me and as I try not to be paranoid about every thing, every breath, sneeze..etc.

I want to be normal and enjoy having newborns like my regular person would do…but I will be honest, I actively have to work on it. I’m scared. Scared of a setback, scared of Josiah getting sick, scared of flu season, visitors..I mean..just wow. When I go to public places I steer clear of people who have symptoms of illness. The other day at the grocery store I was absolutely appalled as my cashier was coughing and sneezing..and it was too late for me to get out of the line. I was livid…how dare she cough and sneeze all over my groceries?!?! I mean,I am trying to give you a glimpse of my mindset when I go out. Before people come to visit us (and I decline all visits mostly) I have to advise them to shower and make sure they have not had contact with children before coming over to my house..it’s that intense.

RSV does a number on you when your child has had it so severely. My doctors have advised me to avoid public places until flu season is over…we are talking months!! But I will do what I have to do. We are working to see if our insurance will cover the Synagis shots and have our pediatrician backing us in case they try to deny us. Hopefully they won’t!

Tomorrow we will be taking Micah to a pulmonary specialist so they can keep an eye on his lungs.

On another note, We found out Josiah does NOT have Hirschsprung disease! His biopsy came back negative! Whoo! We are going to follow up with a gastroenterologist to find out why he gets uncomfortable when he has to poo. My husband is off for another week and a half and then I am on my own! Helpppp lol. Some pics.

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Blessed to have my boys home!

Working our way OUT.

Wow. The last time I posted my son was in the PICU on the way to getting better.

Micah and I have “graduated” to the 3rd floor now and are in the regular patient section. He was extubated several days ago! HOORAY. This means that they took of all of the tubing that was down his throat helping him to breath, OUT! ::::Happy dance:::
From there he was put on something called “Vapotherm” which basically delivered a high flow of oxygen to him, and then he was weaned off of that and then moved to the regular patient floor where he requires absolutely NO oxygen. WHOO! Can you tell I’m excited through my excessive use of CAPS LOCK (see I did it again.)

Before I explain where we are at now, I just wanted to take a minute to give a huge thank you to everyone who took the time out to pray for my son. Prayer is effective and I firmly believe it is because of prayer that Micah is doing so well. He went from fighting for his life last Friday, to having a turnaround that very Saturday. Amazing amazing amazing.

At this moment, we are still in the hospital. We are still here because he needs to be weaned off of the medication they gave him to sedate him. He will be off of the morphine tomorrow. He is also “learning” how to feed again appropriately. I’m hoping to be home by tomorrow or Sunday and hopefully not a day longer. I am growing extremely weary of the hospital. I am quite desperate to get home as it has been three weeks since I have been home where my husband and my other beloved son, Josiah is!! Micah is actually doing very well with his feedings. He had a bit of a “scare” a couple of nights ago. I was feeding him some of his vitamins through a bottle, mixed in with breast milk, he was working really hard to down it and after the feeding he had a bunch of retractions. They put him on some vapotherm for the night and he did great after that. When I saw those retractions though, I was a hot mess. It kept reminding me of what brought him in to the ER in the first place. The nurses and doctors comforted me and gave me lots of hugs, sent me (more like commanded me…) to sleep, and in the morning he was great. Because of that however, we had to work with him on feeding all over again. This has required me working with the hospital’s speech therapist (to see how he swallows) and also with a lactation consultant to see if we can have him breast feed as well. I have been pumping exclusively but have not had the opportunity to work with my boys on breastfeeding. Micah did well today though and latched and even drank a good amount! Another victory. However, as of tomorrow his feedings will be the sole hold up for why we are still here.

In my humble opinion, I think Micah is ready to go home. He will simply require more frequent feedings for a little bit and I will have to pace him so that he doesn’t tire out easily. Even the lactation consultant thinks he is ready to go. He has come SUCH a long way from when he was admitted. He is hardly even coughing anymore, and everyone tells me that the coughing can last up to six weeks. *sigh* BUT..if staying in the hospital for a couple more days is what they think is best, of course I will comply. I am just getting so anxious to be home again.

I can’t wait to be reunited with my husband and Josiah. I can’t wait for the four of us to feel like a family and be under the same roof. I’m so desperate for it! It’s hard being in the hospital all of the time..especially when we are so close to the finish line..and especially when you are in another state and alone. I’m finding that some doctors are more aggressive than others…everyone has been giving me a different tentative date for going home. Another thing I can’t stand are all of the residents that are in the hospital! During rounds there are literally 10-15 doctors outside of the room. When I’m called out there to talk to them I literally feel like I’m on a stage..they’re all staring at me and I get so nervous. I just want to talk to one doctor please and thank you. I know that they’re learning and all..but it can be overwhelming and even confusing at time to find out who is the one making the calls on my son. The residents are more cautious than the doctors, so I think if it were up to them I would be here forever and a day. I can’t keep track of them.

But..I digress. The point is – Micah is getting better and for that I’m so extremely grateful. Being in the hospital has been such an eye opener and has changed me so much. I don’t think I can ever be the same again. Being in the PICU, there were two deaths on the floor. Do you know what it is for children to die? Horrible. I was in the lactation room pumping when the mother of the patient who passed away found out…I will never forget it. She was running down the hall screaming, “NO NO NO NO NO! THIS CAN’T BE! GOD NOO!” Her voice will stay with me forever. As a mom hearing another mom deal with that…it just haunts you. There is a lot of sadness here as children deal with terminal illnesses 🙁 It truly opens your eyes and makes you reevaluate things.

Josiah came up here yesterday to get a biopsy for Hirschsprung Disease. We will find out Monday if he has it or not…I’m hoping and praying not. He has been doing so well! My husband has been doing a stellar job being with a newborn on his own. It’s hard. I have so much respect for parents who do that all of the time..man, I have a new appreciation for you. My husband and I have gotten a slight glimpse at what life would be like if we were on our own without each other…not a fun view! All in all, God has equipped us with strength and grace to get through this. We are almost at the finish line.

EXTUBATION! Light at the end of the tunnel!

Micah was extubated yesterday! This means that the tubes that were down Micah’s throat to help him breath are OUT. They took them out yesterday morning and he has been doing so well! My baby looks recognizable! Oh happy day!

To those of you who have been praying for him I want to say, THANK YOU. Micah has had quite a group of people praying for him and we are seeing the effects of those prayers..so thank you, thank you, thank you. Micah was in a very scary place and is now on the road to recovery. We are seeing the light at the end of the tunnel! I can’t wait to go back home and be reunited with my husband and Josiah. We will finally be together in the same place as a family. This will be a first since the boys were born. The plan is to take Micah off the high flow nasal canula down to the regular flow and eventually off completely. We will also be trying to bottle feed him today to see how he does! Yesterday I held my baby for the first time in an entire week…it was the sweetest moment. Some time today we will be moved from the PICU to the regular floor. They will continue to wean Micah off of the sedatives so that he doesn’t experience withdrawal.

I’m happy happy happy (like Uncle Si on Duck Dynasty lol). My only thing is – how will I make sure that Josiah doesn’t get RSV once we go home? From my research, an infant with RSV can be contagious for up to FOUR weeks. We have been in the hospital for two weeks. There is a good chance that Micah may still be contagious when he leaves the hospital…if that is the case, how can I prevent Josiah from having to go through this? This is one of my huge questions for the doctor once I see her. I can’t imagine them moving Micah from this floor if he we were still so contagious to a floor that is more open and with tons of other patients…

After this is all over, I will have to continue to fight my giant of fear. I don’t want to live in constant fear and paranoia, but I also never ever EVER want to go through what we went through with Micah. I want to do my best to avoid it. I will have to be a bit extreme (I will go more into this in another post) to protect my babies during cold and flu season. I am also extending my maternity leave so that I will be out until January. Five weeks of my leave were spent in the hospital. I want to be able to enjoy my little babes! I will post pictures and more updates. Thanks for reading and keep praying!

A brighter day.

The past couple of days have been intense as my five week old preemie son has basically been fighting for his life. Yesterday was also a particularly scary day filled with lots and lots of tears as respiratory therapists and nurses did their best to comfort me.

Yet, today is a brighter day. Last night the doctor in charge decided it was time to start weaning my little Micah Bear off of the ventilator. Micah has been on the ventilator for exactly one week and a day. The doctor wanted Micah to start breathing on his own and not relying so much on the machine to do so much of the work for him. If his levels were okay, they would begin weaning him from 58% (60% is the highest that machine would go and he was very close to the max) and down. They would wean him down 2-4% every several hours and monitor his levels. So they began to do that last night. And guess what? Micah has been maintaining a good heart rate, breathing, and oxygen level.

COULD THIS BE PROGRESS?!?!?!? Dare I say it?!

I will be honest, when I received the update I was almost in disbelief. After hearing so much bad news I was feeling very wary. Then I felt like God was saying, “You’ve asked me for this, you’ve prayed for it..and when it’s happening you’re going to doubt it?” Ouch. I felt conviction and instead started to give thanks to God. Today we have progress so I will take it and say thank you thank you thank you!

The doctor came in and told me that they plan to wean him off the vent slowly and a bit more aggressively tomorrow, along with the sedative meds they have him on. I asked the doctor, “Are you telling me he is making progress and doing better?” The doctor said, “Yes.” :::Bursts into happy dance inside:::

So I have been pepping talking my little Micah Bear and telling him that he needs to continue to progress and not take any steps backwards! They have held his feeds for the past two days as well because he was having some distension in his belly but if that goes down he will resume his feeds tomorrow. He had a couple of x-rays of his tummy to make sure he had no obstruction in his stomach and so far he is okay. They are thinking that the sedative medicines have slowed down his digestive system a bit but that he should be okay. Again, I WILL TAKE IT.

It has been over a week since I have seen my precious little Josiah.My husband and mom have sent me tons of cute pictures of him. Here is Jo-Jo bean:

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Sending me the message while I’m away.

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Josiah lifting up his hands to pray for his brother. Thanks Jo-Jo Bean! Prayer works!

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Cuddles with Daddy. Jealousssss.

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Meanwhile, this has been Mommy’s status. Not for long!!

Continue to join with me in prayer! Thank you for all of your support during this intense time…there is light at the end of this tunnel!

This too, shall pass.

Today I found myself almost giving in to despair and hopelessness. My Pastor called me and gave me the swift kick in the butt I needed to get things into the right place again, and he did it without even knowing it. Micah is still in the hospital fighting RSV. Here is a verse that comforted me:

“We are hard pressed on every side, but not crushed; perplexed, but not in despair;” 1 Corninthians 4:8

I also have been leaning on this one:

Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.
Philippians 4:6-7

I am holding on to my faith, praying over my baby, and believing that “all things work out for the good of those that love Him.” (Romans 8:28)

I have struggled with fear my entire life. While it would love to consume me at this moment, in regards to my son, I absolutely refuse. All I can do is trust the God that gave me my precious little Micah Bear. That’s what I’m going to choose to do!

Tonight we had a big scare…Micah was having trouble getting rid of the Carbon Dioxide in his body. Normal levels are between like 30-45…Micah’s level was 99. SCARY. I pretty much had a meltdown, called my husband who also kind of “lost it,” my husband called my pastor, my pastor called me. He gave me words that I absolutely needed to hear. He encouraged and I decided to refuse to give in to fear, doubt, and all of the things that have been plaguing me and threatening to devour me. I went over to Micah’s side and started to speak some words of life to my boy. Then, I rested for a couple of hours. When I woke up, the nurse told me his level went down to 67. The doctor came in and told me that it was a really good sign that his levels went down because it showed them that his levels COULD go down, and that we were making progress in the right direction. PRAISE GOD.

We still have a ways to go but I am taking each step as a victory. My little boy is a fighter and is going to go on to live a life of purpose and destiny! I believe it. I will be keeping posted often because the hospital has provided me with a laptop and blogging is a welcome calm for me. Continue to keep my precious one in your thoughts and more importantly in your prayers..pray for his Momma too.  🙂

 

Homesick and an update on baby Micah.

Micah continues to do well! YAY! For those of you who have been praying – THANK YOU! Prayer is effective and works. Friday night I literally feared the worst..that I was going to lose my son..and it seemed like a complete turnaround Saturday into Sunday. I am going to credit that to prayer. I have people who are praying for Micah all over the place and all I can say is thank you, thank you, and thank you.

I have been away from home now for two weeks. I have not seen Josiah for a little over a week. I saw a glimpse of my husband yesterday when he came up to clear the hospital’s freezer of my breast milk (more on that another post). Since we had a sitter for Josiah he couldn’t stay long, so I enjoyed his presence for about 15 minutes. Hey, I’ll take it. He DID get to see Micah though which was fantastic. It was a bit of a teaser though, to see him and then for him to have to leave 🙁 I miss home. I can’t wait to bring Micah home and to begin to experience having two babies with the hubby. Because of being in hospitals we have not really been able to be together with our sons and take a deep breath and say “So THIS is what having babies is like!” Micah and Josiah have not been in our home together since they were born. It’s long overdue now! They have also barely had a chance to be together since birth. Even when they were in our NICU, they were in separate rooms (adjoining..but separate). I’m sure they miss each other! I have also been spending money like CRAZY which is something I didn’t want to do, but I’m basically starved all the time and the hospital food is simply not cutting it anymore. How I long for home cooked meals every night!

I feel bad too because my husband has to do daddy duty on his own for a bit now. He’s great and doing awesome but it’s hard! We have both gotten a glimpse of what it would be like to be a single parent and ohmygosh it’s not easy at all. So hat’s off to all of the mom’s and dad’s who do it every day. You are amazing. When I get to FaceTime him he looks exhausted and it’s clear he is absolutely getting ZERO sleep. It’s a good day when he has had the chance to shower. I have been able to get more sleep than him because for the most part, as I alternate between sleeping at the hospital and at the local Ronald McDonald house. The problem with sleeping at the hospital is that I’m usually riddled with anxiety and obsess over the machines and get no sleep whatsoever. The nurses tell me to get sleep now, because soon I will never see it again. I have obliged.

Today I was able to hold my son for the first time in an entire week. AN ENTIRE WEEK. He was crying and I was able to calm him. Since he was intubated for an entire week, he has no voice at the moment. The nurses have told me it will come back day by day. When he cries no sound comes out. It will be the sweetest day when I can hear my little man scream again. It’s coming!

I’m so grateful that Micah is doing better. The PICU is a very scary place to be. In fact, something horrible happened two days ago. I was in the pumping room, pumping away when I heard screaming..a mother saying.. “NO, GOD NO! IT CAN’T BE! PLEASE GOD NO NO NOOOO!” and then I heard running down the hallway and tons of voices. Immediately I got chills and started to pray for this mother. I found out that she lost her son, he passed away in the PICU that night. What I was hearing was the moment she found out…how awful. I will remember it for the rest of my life. All of the nurses and doctor’s on the floor were in there. It literally broke me.

This is why I am ready for home. It has been a long two weeks and I’m ready. If all goes well I should be there this weekend. Keep my boys in prayers and thank you again for those who have been doing just that! Josiah will be coming up to this hospital on Thursday for his biopsy to see whether or not he has Hirschsprung disease. Hopefully not..more to come on that tomorrow.

Still going through the storm.

Micah is still in the hospital, still intubated, still not home. He developed some type of infection in his lungs in addition to the RSV…not good. The nurses have assured me that this is very typical of the RSV virus…that this can happen. However, I keep seeing it as more bad news. It’s not something a mother wants to hear. They weaned him down to 30% help on the ventilator but today’s blood work shows that he needs to go back up to 40% and receive more support. In my opinion, I think they tried to wean him off when he wasn’t quite ready for it. His blood work is showing that he still needs the support. It’s a really scary place to be in. I just want him to live.

Bittersweet part is that Josiah went home yesterday with my husband. This normally would have been a day where we would have been jumping up and down with joy..but a part of us was terrified..we don’t want Josiah to get RSV. This means that we had people come to our house and completely strip it of everything and sanitize the heck out of it. There is also a rule, no one can come to see Josiah. The only people who have access to him are our mothers and that’s it. We allowed them only because with my husband still working, we needed help to watch him while I am out of state with Micah. I have not seen Josiah for a week. My husband and mom facetimed me yesterday so I could hang with him and talk to him. It wasn’t the same but it was something and I was grateful for the bit of light in the midst of the darkness I’ve been in.

Everyday I wake up and it’s the same – please let this nightmare end. Please tell me I am not in another state with my baby who is essentially fighting for his life. I just want to have my family reunited and healthy.  The two precious gifts that we fought so hard to have. The best blessings of our entire lives. It can’t end like this. I’m fighting against hopelessness. I am listening to songs of hope, faith, and reading the Word while fighting against a hopelessness that is trying to consume me. I can’t let it win. I won’t.

Something that is still especially difficult about this process is that I am a state away from my husband. This means that I am staying out here alone and dealing with all of the news with Micah, conversations with doctors, and all of that..completely on my own. It’s incredibly overwhelming. This means that I shed lots of tears. I am homesick and heartsick…I simply want my little family to be happy, HEALTHY, whole, and REUNITED. That’s the deepest desire of my heart.

Micah has been blessed with some awesome nurses. I think God has placed these particular nurses in my path as well. They are very calming, comforting, and supportive. Two of my nurses are mother’s of fraternal twins. They have been so loving towards Micah and have shown me a lot of love and support too..which is nice since most of my support is about an hour away.

Josiah had his first doctor’s appointment today. My husband took him. Beforehand I spoke with the office and told them that under no condition would Josiah even enter their practice unless he could immediately go back to the room where he would receive his checkup. This family will never ever again sit in a waiting room full of germs. No way no how. They agreed to that. Josiah is 6 pounds and 2 ounces. My boy is the size of a regular newborn baby. The doctor listened to his heart and heard a slight heart murmur. When he was in the NICU he had a bit of an irregular heartbeat and received an EKG and everything came back fine. However, his doctor wants us to follow up with a cardiologist about his heart murmur. They are also sending us to make sure his hips are okay since he was breeched. They want to make sure his hips were not displaced but she said she is doing this as a checkup, there is absolutely no reason to think they are according to her checkup. Better safe than sorry I suppose. Other than that, he is eating like a champ (3-4 ounces every three to four hours). He wants to catch up since he spent his first month in two different hospitals. He’s such a cutie pie. I miss him SO much.

I want my two boys to be reunited again.

As for me, I’ve lost too much weight over this past month. Due to pumping, stress, and living in hospitals. It’s taken a toll on what I’m eating..or should I say, not eating. After the babies were born I went down to 99 pounds..and at this point I’m sure I lost even more. MY clothes are hanging off of me.I’m not proud of my weight loss at all. It’s actually a bit disconcerting. I’m trying to take care of myself so I can be the best mom that I can be to my boys.

The one thing that I have been able to do consistently has been to pump pump pump. I pump 8 ounces in less than 10 minutes. In a 20 minute pumping session I get about 12-16 ounces. I have produced so much milk that the hospital no longer has any storage space for it..so my dad is driving up from NJ and will be storing it in the basement freezer. There is also a freezer full at home. If there is one thing that I can be proud about it is my milk supply. It is the one thing that I can give for my boys. Therefore I will do whatever I need to do to protect it. Pumping every three hours whenever and whenever I can. I have not been able to breast feed at all. When Micah was in NICU back at home we tried and he did latch once..when he came home I kept trying but did not make any progress. With Josiah I have only put him to breast once..I would love to try again with him when I see him again.

Tonight my dad will pick me up and we will grab a bite. Then we will put my breast milk in the cooler and he will drive back home. I will continue to stay out here and be there for my precious little Micah. I continue to pray for his health and healing..nothing is impossible with God!

 

MORE prayers please. Intubation for my baby.

The past couple of days have been rough. Yesterday was a really horrible day. Micah was admitted to the hospital Monday because he has RSV. He was doing okay and was pretty much staying consistently the same until yesterday. In the wee hours of the morning on Friday I noticed that Micah was not cuing to eat like he normally would. Normally, Micah would be ready to eat about every 2 and 1/2 to 3 hours. However, Friday in the wee hours I noticed that he was not waking for his feedings. He would fuss but he was not being his normal self. By hour 4 I would have to wake him up myself. When I finally did start to feed him, it would take him about an hour to get the whole bottle down. an HOUR. He would gulp fast and then he would have to pause to catch his breath. Friday in the morning when the doctor came in to check him out, I brought up my concerns and the doctor did some close observing as well..after seeing how fast his chest was retracting he decided to transfer Micah to the same hospital as his twin brother, Josiah. This hospital is in another state about an hour away but is one of the best pediatric hospitals in the country. The doctor felt that he would receive the best care and be in the best place equipped to help him get through this. I was fine until the team came to transfer my precious baby. When I had to say “goodbye” and saw him all enclosed in the little isolette struggling to breathe, I lost it. My mom was with me and we both were just a complete wreck. Seeing your precious baby in that condition and not being able to do anything to help him is the worst feeling in the world. I wouldn’t wish it on my worst enemy.

My husband got out of work and we packed out bags and headed to the hospital. We decided that one parent would be with Josiah and that one would be with Micah. Since I had spent most of my time around Micah, I would continue to be with him so that we would not get Josiah sick. When we arrived at the hospital, right before we were about to go in,  we got the horrible news – Micah had to be intubated. This means that they needed to put a tube down his throat to help give him a “break” so that his lungs can heal. When I walked in to see him I immediately shattered into a thousand pieces. Seeing him hooked up to machines and having all of these tubes in and around him is just horrendous. This is what I walked into…

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The doctors tried to console me but how can you console a mother and possibly make her feel better when this is her baby’s condition? My Micah Bear. This was Friday. Today it’s Sunday and he has not gotten better or worse. The doctor warned me that it can get worse before it gets better. They have been suctioning his lungs to get all of the junk out of it. His lungs are very wet. They also had to insert a catheter to help him urinate on top of giving him a diuretic. He is sedated so that he can receive this treatment. There are times when his eyes open and he moves around…it’s like he’s looking for us and asking us to get him out of here.

I have so many things happening inside my mind. Guilt. How could I have prevented this? Micah did not receive visitors besides family and even that was minimal (I’m talking my brother in law, best friend, and mom). We didn’t take him anywhere except for the pediatrician. No one who visited was sick. HOW DID THIS HAPPEN? When we were in the NICU and the babies were first born they made us watch some training videos and one of the videos they made us watch was one about RSV. I kept thinking, no way I’m going to let my babies get that. Yet, here we are. Doctors have assured me that because they are preemies their immune system was especially susceptible and it could have been anything. But still, I feel so terribly awful. As a mom,  you’re supposed to protect your child. Another emotion I feel is sheer TERROR. I’m struggling with fear and fighting it so that it won’t consume me. There are times where I feel like I’m going to faint or like I am fighting a panic attack. I walk around feeling empty, hollow, and like I am in a terrible nightmare. That I will wake up and this will all be some horrible horrible dream.

I have been holding on to my faith. For some reason that I can’t fathom, we are going through this. I have asked God truthfully, “Lord..we went through so much to get pregnant, why are we going through this?” I have so many questions but no answers. But who can truly know the mind of God or understand why these things happen? I have been holding on to some of my favorite biblical promises: “He works all things out for the good of those that love him..”

I also keep holding on to the fact that these babies are my greatest BLESSING! I truly believe that God did not put them in our lives just to rip them from us. Despite all of the horrid things that are trying to swirl around in my mind, I am looking towards the brighter days that I believe HAVE to be ahead of us. It has been a month and I have enjoyed one baby at home for a week. I am ready for normalcy and to feel like a “regular” mom who can celebrate her babies one month milestone (which is tomorrow by the way).

Yesterday my husband saw Micah for the first time and cried. Seeing him impacted him because of all the swelling around his eyes and on his body from the fluids. My husband decided that we needed to go to church the next day, since our home church is in the same state as this hospital (yep, we travel an hour away and out of state to attend our church. It’s that good). I struggled but agreed. It’s been SO long since we have attended church (about a month, which is about 378219 years for us). My husband felt that we needed to renew our faith and be surrounded by a good support. We desperately needed prayer. So that’s what we did this morning. I was really hesitant to go because I was thinking to myself, “wow…the last time I was here, I was pregnant. I should be walking in to church with my boys.” I was also nervous because I didn’t want to be flooded and bombarded with questions about their condition and all of that. I simply needed to sit in the house of God and receive spiritual healing. My husband promised to “protect” me and did a good job with it. We sat in the front near our beloved Pastors and got what we needed so badly. As soon as my pastor took the mic he began to pray for my two boys…the church joined in with extreme fervor and passion. Afterwards when it was time to meet and greet one another, we didn’t have to leave our seats. Everyone came up to us, hugged us, encouraged us, and provided words of comfort. It was much needed. Of course, I did what I do best lately..cried and cried.

What really touched me is this – there is a woman in our church who lost her husband several weeks ago suddenly. Came out of NOWHERE. She is the sweetest woman ever. However, because it was around the time of me being admitted to the hospital with preeclampsia and delivering my two boys…we didn’t get to communicate the way I would have liked. Today she came up to ME, crying and telling me how much she loved me and how she knew without a doubt the boys were going to be okay, and that she was praying for us.  I told her how sorry I was about the loss of her husband and we both just held each other for awhile. At the end of the service she slipped a check into my hands for $100. Wow. The amazing people at my church continue to be such a blessing.

Did I mention that one of the members of my church works in the food department of this hospital so we have received all of our meals for free which has been a HUGE financial blessing and one less thing for us to worry about.

My Pastor preached an awesome and encouraging message. Our whole church is standing with us in faith and prayer for Micah Bear. Please stand with us too. This is a really hard time. If you’ve gone through something similar or know someone who has gone through a similar situation and had a good outcome, please share. I can use all of the encouragement I can get.

As a person who struggled with IF you assume that once the babies are born things are “good” but we’ve embarked on a whole different kind of road. Looking forward to those brighter days.