June 26

I drove into the hospital this morning with great hope that today would be a fresh start, a new day. Tammy, one of our primary nurses is on today so that always starts me off on the right foot! Everett was ready for his first feeding of the day when I got there. Our plan from yesterday was to continue to tube feed until after rounds today.

I decided to start the day off with some skin to skin contact with Everett, it was something that I realized in the middle of the night I had not been doing over the last few days since we were trying to bottlefeed. I must say his respiratory rate is much better when we are skin to skin.

Then we did some belly time to get him moving and working muscles.

He picks his head up and moves it quite well!

 Pooped! My cheeks are too heavy!

During rounds they confirmed that his echo was good, his thyroid test came back normal, his viral panel came back negative, his blood gas looked great, and his chest x-ray looked fairly good. It is now his upper left long that is a bit cloudy. Over all, the doctors hope that he is still continuing to heal and is just not 100% yet. They decided to feed him 80 mL instead of 85, apparently overfeeding could affect his respiratory rate and he gained a significant amount of weight. He is now a 10 pounder! They considered lasics to try and clear up his lung but decided to wait on that for now to see if it heels on its own. 

Tammy and I decided to give him a bath today! It was well overdue! He pooped on me as soon as I picked him up so to make a change his linens. 

Bathtime! His umbilical cord stub still has not fallen off since he had the UVC line, there are still sutures in there too! Hopefully within the week. My chunky monkey!

All clean

All cozy after my bath…

Andre got the decals up in Everett's room that he has been meaning to do, there is never enough daylight! Here are some pictures of the few things we have together in his room. We had it painted this orange color and did not want to repaint, so we decided a safari theme would work.

Looks great love!!

We got these on our trip to Colombia knowing we were going to make it a safari theme.

June 25 eve

Today went from bad to worse. Everett was put back on oxygen, not for anything serious though. They think it may help his respiratory rate slow down, the cannula still is never in his nose! Ugh. I asked if we could take things down a notch and give Everett a little break. We have been pushing him hard to learn how to eat, and I feel like it is stressing him out. I have been asking them to take it slower as it is, I can tell he needs brakes more. It is very clear to me that he is uncomfortable with milk in his mouth, every time he tries to swallow he chokes. I do not want him to hate eating, and give up. I don't think that is in his nature, but I don't want to push it. I also asked if we could forgo the milk on the pacifier so he has one safe comforting. I think it's a good idea for many babies, however it is obvious that he gets stressed out when milk is in his mouth. He stopped wanting his pacifier. This poor baby needs something that he can trust. Now we have a note hanging so everyone knows not to put milk with his pacifier. We decided yesterday to take a 24 hour break from trying to feed him with a bottle after my breakdown with the nurse practitioner. They have not seen me emotional until yesterday, so I guess they took me seriously. I believe that is why she put the oxygen on too, knowing we were taking a break from feeding, we may as well help him any other way we can while we are at it. His respiratory rate was too high to even attempt feeding anyway. If something could have gone wrong yesterday it did. We had a male nurse who floated to the NICU, he had no idea what he was doing. Poor guy was trying, but he didn't know anything that was supposed to go on...how much Everett ate, how often, how fast, he let him pee all over his clothes and bedding two times. Even when I was there asking him to cover him up. He was trying to measure his belly every time he fed him which is not necessary. His diaper needs to be out-of-the-way so I kept covering him up with a wipe, but he kept moving in with his clumsy behavior.  :/

It was Dr. Brooks last day with us too, she has been outstanding and I really want her to stay until we can go home. She kept talking about how hard she was trying not to get attached, but made it clear she was attached to both of us. She called me into her office to talk and said she had never done that before. I was scared, but it was more for an official goodbye. She told me how sorry she was for everything, and then took that statement back. She said that she is not sorry he has trisomy 21, because she knows he is going to have such a wonderful life with me and bring our family so much joy. Then we got into the serious talk, she said if things don't turn around with the feeding soon we may need to consider a G-tube, or a feeding tube. That would allow him to come home!!! She knew although most parents would be apprehensive about this, I would be all for it since all I want is for my baby to be home in my care. She says it scares most parents too much and they think their baby will never eat. She told me she was confident he would be eating but it might take longer than we had hoped. She wanted me to know this information since she was going to be gone so I could ask about it since doctors only use it as a last resort and don't bring it up for months since most parents avoid it. The upside is he would come home, the downside is he would have to have surgery to put the port in. He would also have to be stable with everything else first. His breathing is still not where we would want it to be at this point.  We also need to give him more of a chance to learn how to eat, it has only been a few days of trying. She kept reminding me how far we have come in such a short period of time with how serious his illness was. I ended the conversation by letting her know how thankful I was to have her as a doctor for these past critical weeks, then she hurried us out of her office telling me she didn't want to cry.

So, I was sad with where Everett is at with eating, nervous about his breathing, trying to deal with a male nurse who knows nothing, who keeps trying to talk to me about current events and how old the cuff for a blood pressure machine must be…then I find out that our plan for me having a personal room shit the bed. I had been told that there were two twins in separate rooms that would be moved to a twin room so I could have a room with the door. When I asked yesterday they said that was no longer going to happen since two twins were about to be born that would probably, eventually, be in the twin room. So the charge nurse told me that there is a possibility that on Monday I could get a room. What frustrates me most is the majority of the babies enclosed rooms do not have parents here by their bedside all the time like I am. I feel horrible for those babies, however I think that if a parent is involved they should take precedent to a room where one might manage to catch a bit of shut eye. A lot of times when babies have plans of going home it doesn't happen, I am really hoping this little baby gets to go home so ever and I can have a private room so I can get some sleep, and he too! It wouldn't be so bad if our location wasn't across from the baby that cries the most, the lounge, the storage area, and the bathroom. It's literally the worst location possible. I asked if I could be moved down the hall where it is quieter and she said yes, however I would not be able to move another time. So I will hold out in the hopes for the private room.

After the nurse let him pee all over everything, again, and I was changing the bed for a second time, trying to manage all of the new tubes with his oxygen holding Everett in one hand, trying to make the bed in the other, I lost it. I know I have not been getting enough sleep, the day was too full of setbacks, I started bawling with my baby in one arm and pee blankets in the other as I wept my mascara filled tears all over my poor baby. (I need to invest in waterproof mascara!) I was facing the wall in hopes I could have a good five-minute cry with no one noticing. For some reason Dr. Brooks came back to his bedside, (she is like a ghost, I never see her) I'm sure I scared her as much as she startled me. Snot was running into my mouth since I had no hands to blow my nose, I did consider wiping myself with his peed on blankets at one point. I was late, needing to get Kristin from the airport. I told Dr. Brooks I needed to get my sister but had to change the bed and get Everett to sleep before I left. She help me make the bed and get Everett wrapped up. She knows I can't leave with him awake and fussy. She told me to go and she would get him to sleep. She text me about 15 minutes later saying he was breathing well and asleep. I'm assuming it was from her personal cell phone. It gave me that sense of small-town USA that I miss and crave so much at times like these. Then later that night she text me again saying that his echo came back good!! Which was great news (clearly) that his heart is still doing well! She has such empathy for us, her daughter was in the NICU when she was born she has cerebral palsy. So she truly gets this madness. I thanked her again for everything. I'll send her a picture of Clara and Everett together once we are home.

Thankfully Ana called out of nowhere just at the nick of time. I still don't even know why she called me, I completely hogged whatever conversation she was planning to have.  Then I was able to get Kristin from Andre's work. I have not a clue what I would do without my two sisters!

Andre went to see Everett after work and Kristen and I came when he got home! I was assuming Kristen was anxious to hold him and I knew if I took her with me I would have to go home at a reasonable hour and get some sleep. We had a new night nurse, she was wonderful! I finally got some rest! A very decent ending to a horrible day.

Soooo tired! 

June 25

Everett slept through his first attempt at a feed today. He tends to be quite tired in the morning. He is four weeks old today, I hate to think about that, I never thought we would be here this long. What is even scarier is I have no idea how much longer it will be. With him having trouble learning to eat, it's becoming quite discouraging. I am trying to stay patient, it's so hard, I just want him home.

Andre came for the 5 o'clock feeding last night. Julie, our speech therapist was here and did a few assessments. She is coming back today to meet with me at 11 for his next feed. I am hoping we get some ideas and answers about how we can help him. His respiratory rate is still quite fast so it is hard to feed him in fear of aspirating. It is like he has been running and is out of breath, and on top of that he needs to learn to suck, swallow, and breathe without choking. We continue to ask a lot of this little guy. He is trying, you can tell he wants to eat, but is very apprehensive. Understandably so. He is also still quite hesitant to swallow. They want to do a swallow study on him but he needs to be able to drink 15 mL on his own and right now we are between five and 10 if we are lucky. 

I am trying not to get too discouraged, I know his lungs still have some healing to do. His respiratory rate needs to slow down for his health and in order for him to eat. I came back last night and we did belly time. He did a great job picking up his head, those big cheeks must make it heavy. He only lasted a few minutes and then we read a book. My occupational therapist taught me how to give him a massage, so I did that next to get him nice and sleepy. It's like he knows when I am about to walk out the door, his eyes pop open brighter than ever. It is the worst feeling in the world to leave him. I bawl every night on my way out having to go. I want to take care of my own baby. I want to be there for him when he cries. I want to be the one that changes his diapers, feeds him, and snuggle him. I am not a believer in the Ferber (let them cry it out) method. I don't think you can spoil a baby, especially when they are this young. I want to hold and squeeze him every time he cries and make it all better.The nurses here have three babies to take care of and it is next to impossible to tend to each of them if they are crying. Now that he is feeling better his monitor doesn't beep so much, and thankfully there aren't any high alert beeps anymore. The bad news about that is he gets no attention, even when he is crying, needing a diaper change, needing his pacifier, needing a snuggle. I wake up all throughout the night wondering if he is sad, I think about him crying and needing me, and hate that I'm not there every moment of the day for him. I go home and get a few hours of interrupted sleep, calling in every few hours to see how he is doing. I hope calling makes the nurses pay more attention to him. I have picked up a few more primary nurses which is great, they will be with him regularly so I can get to know them and they can get to know Everett. It helps me sleep at night. I know that there are many nurses here invested in him and love him dearly. I sleep a lot better when they are on.

I talked to the nurse practitioner today about getting a private room, or even one down the hall that is not next to the lounge and across from Amir, who cries all day and all night. This poor baby (Amir) is three months old and has no family here, ever. They don't even call to check to see how he is. I don't understand how that is possible. It breaks my heart. I wish I could go in and hold him myself, but I am not allowed.

If I can get a private room, I could stay throughout the night and be here literally. There is a door and blinds in the private rooms. There is just no way I can get sleep with an open hallway room with so much chatter, lights, crying, beeping etc., so I need to go home and get a few hours of sleep, I am running on empty for sure, I couldn't be more excited to go get Kristin from the airport today!

A sleepy smooch for all those checking in on me!

I just met with Chris from speech. His respiratory rate is really high so we can't even attempt to feed. He is working very hard to breathe again. She thinks he aspirated trying to eat. I've been begging to have only me feed him. I don't claim to know what I'm doing but I'm patient and have more time than the nurses do. He rarely chokes with me because I go so slow. I feel like having everyone and their brother try has set him way back. I really wish I was listened to, mommies do know best. I asked for two days to let me try only, and go slow and only bottle feed when I am here. The reason I am not trying to breast-feed because I can't control the amount that comes out.We, the speech pathologist and I, agree he needs at least 24 hour break. We will see what the doctors think. The only thing we can do to get his respiratory rate down is give him time to continue to heal. I know we need to push him, I'm the one that wants him home more than anyone here, if I'm not pushing him, he probably shouldn't be pushed. Extra discouraged... :(

Dr. Brooks and Melissa the nurse practitioner came by while speech was here. Instead of all having a wonderful conversation together Dr. Brooks said she would come back. She has told me this once before and never did. I just asked to speak with either of them and Melissa came. I let her know I don't want anyone putting breast milk on his pacifier, so he has one thing that he can thoroughly enjoy always without fear. I asked for them to not feed him from a bottle for 24 hours to give him a break. Most nurses aren't slow enough with the process which causes him to gag and choke. It's no wonder he hasn't taken to eating yet.  He has been extremely sleepy over the last 48 hours and I am assuming it's because he's working so hard to breathe. She said she was going to put the cannula from the bedside on, so he get some oxygen to help his respiratory rate. As much as I don't want him having another cannula on his face, I am all for anything that helps him get home sooner! 

:(

June 24

Good morning! This is what I have decided to do instead of try to eat myself this morning! 

I am too cute so my mommy has a hard time waking me up! She also knows how hard it is to get any rest around here, so it makes it really hard to keep me alert when I need to be. And I know when my mommy is about to leave, so I kept her here as long as I could last night! 

June 23

Today was a very hectic day. Our first real day attempting feeding all day long.

We started our day with the occupational therapist who showed me some stretching, muscle building, and relaxation techniques. Then speech came, however Everett was too tuckered out to show his stuff. She showed me how to feed him once he woke up some and we had a try. It is slow going for sure. Poor baby has an aversion to anything oral, but he is trying. The speech pathologist said he kind of falls right in the middle. Meaning some babies do not let anything get near their mouth once they have experienced what he has, and others take to feeding right away. He is trying but hesitant. Hopefully with lots of practice this week we make some significant gains. I am basically living here at this point in hopes that consistency with me will help.

My conversations with the doctors at rounds tend to be much less about his health and more about feeding and our plan to get him home. That is quite encouraging. However, no one has any idea when that will be since it is all up to him. I have to keep reminding myself where he was just one week ago, even two weeks ago. He has made so many gains it will take some time to reach our next goal! 

I am excited for Kristen to get here on Thursday so she can come in and help me with Everett to so I can spend a little more time with Clara here and there. She must feel like I have abandoned her.

Being home together as a family will be one of the best days of my life!

Today was too hectic for too many pictures, so here are two I just took right now.

Sound asleep

June 22

Another big day for my little big man. We are going to try to take him off of the Vapotherm to see how he does, I cannot wait to see his sweet chunky face without the cannula. He just keeps getting cuter! They mentioned he might need a little low flow oxygen, but the tube won't be so big and heavy, it will be easier to move him about. He will still have his feeding tube through his nose as well, thankfully that is nice and small, but I can still tell it drives him crazy.

We are scheduling OT, speech, and lactation, to help...with everything. Feeding, positioning, possible bottle feeding, etc. 

Father's Day pics

The nurse saw me attempting to trace Everett 's hand under his Father's Day card. She helped make this for Andre too!

Some pictures of the Fam up north on Father's Day! 

We got Everett off of the vapotherm at 10:30. Here is a picture of my handsome man with only one tube left, I snuck two pictures before they put tape back on his sweet little face.

Look at me standing and holding him, it is so easy to get him from his crib and hold him without the big tubing! My heart is full!

He was really upset, as anyone would be having the tape pulled from his face. Thankfully this nurse did it as gentle as possible. His oxygen is at 99% right now, all on his own! His respiratory rate has been a bit higher when he is sleeping and drops when he is awake. 

Deb from lactation came over to see us, I have been seeing her regularly. She is wonderful. We have decided to not push him with feeding today since he has had enough change without the Vapotherm.  His respiratory rate needs to be below a 70 in order to practice feeding from me or a bottle so he doesn't have risk of aspirating. 

As anxious as I am to get him eating, I know I need to be more patient and move at his pace. We will just hope that his lungs do not get too tired on his own and he can stay off of Vapotherm, or any oxygen help. Melissa, the nurse practitioner said that his x-ray looked fine, still a little cloudy in the upper right lung but that the x-ray usually lags a few days behind actual results. Although Everett looks so much healthier, he probably still isn't feeling 100%.

Everett passed his hearing test!! He will need one every six months since down syndrome babies tend to have more fluid in their ears. We will want to make sure that he can hear well to help develop his speech and language.

Another big assessment happen today. OT came and did lots of work with Everett. She said that he has great muscle tone, good reflexes, makes great eye contact, holds his head well, and all sorts of good things! She wasn't referring to a baby with down syndrome, she was comparing him to an average baby. She put him on his belly and placed him on his face on purpose, he had no trouble picking his head up and getting into a comfortable position where he could breathe. He continued to pick up his head just for fun. I keep trying to tell everybody how strong he is, all I get back is low muscle tone, low muscle tone, low muscle tone.  I know that little man has great strength, even when he is still not feeling 100 percent!  She also said that he sits quiet and awake, very alert, which is a good sign for learning. She said he is already learned that he can cry, and stop when someone is near him because his needs will be met. She was impressed with this learned behavior. I can't wait to see him at his very best, he is amazing!! You go Tiger!! 

I am going to wait to continue to try to feed him in anyway shape or form until tomorrow when I meet with his speech pathologist. Daddy went straight there after work, to be there for his 5 PM feeding. 

Can you guess how many times I kissed that available chunky cheek today? I'm surprised I didn't give him a hickey from gobbling him up so much!

Dada came at 5 for his feed. Gave him a million kisses on his big chunky cheek. We got clara to bed and I came back for his 8 o'clock feed. The nurse was busy with another baby so she left me a bottle. I wasn't going to try that just yet, but I could tell he was hungry. He slowly drank 5 mL for me. I think I am more nervous than he is so we went nice and slow. 

June 21

Happy Father's Day to the best daddy my babies could have! I know this is not what you would have pictured for your first Father's Day with your perfect son, you continue to amaze me with your strength and push Everett and I to charge on with a positive attitude! Clara idolizes you, her silly daddy, we all love you with everything we've got! Thank you for being a wonderful provider, comedian, caregiver, best friend, we couldn't ask for more! We love you! 

A proud dada!!! 

Your snuggle bunny!

Dada and son

Your baby girl adores you!

Your first day home with Clara, I can't wait to take a picture of your first day home with Everett!

Happy Father's Day to my dad, Tiger the first. He continues to encourage me and keep me strong! I know I can count on him for anything and that means the world to me! I love you! 

We will get some pictures with you and your grandson as soon as we return to the sunshine State!

We miss you Lary! Sorry I never had the pleasure of meeting you...

Everett update:

Good morning my bright eyes! 

Everett is doing well. It has been a low-key weekend, with minimal changes. We have been moved to the north side of the hospital, where the healthier babies stay.

Other than continuing to wean him down and then off of the Vapotherm, the next great adventure will be learning to eat and feed. Being a"on a vent for so long has definitely set him back, but I have great faith that this little man will learn as quick as he can! 

We were planning on bringing Clara in today and getting a picture for Father's Day. She doesn't act like she feels that well, so we are going to hold off. Stay tuned for a picture of daddy holding both his babies! Soon we hope!!