Day 37 - Look mom, no Oxygen!

That's right, we decided to try Jonah off oxygen today! He had been pulling out his nasal cannula anyways and still satting well so I asked the nurse to turn down the flow (liters of oxygen delivered) and she asked if we wanted to just try taking it off. Ahhh, heck yeah! So far so good, keep your fingers crossed!!!!!!!!!!!!!!!!

Still no food for Jonah though, boooooo!!!!!!!!!!

Here's the first oxygen-less photo of our beautiful baby boy! You can see he's back in the NICU warmer instead of the crib due to all the lines and the nurses needing access. You can also see the surgical scar on his tummy where the second surgery was done. A lot bigger than the first round but as long as it holds we're happy. My husband assures me that boys think scars are cool! :)

Day 36 - Pushy?

I had never been one of those mothers. You know, "those mothers". The kind that drive all the nurses crazy. I had heard the front office staff at the NICU comment that after about a month, NICU moms start to go crazy. I was proud of myself that I had learned all I could, but that I still trusted the doctors and nurses to do what they thought was best. This...I'm afraid, came to an end somewhere around this time.


When Jonah had been out of surgery less than 48 hours, they started talking about moving him out of the NICU up to the 7th floor again. No, I said, he's not ready! He's still on pain meds, he's still on TPN (IV food, not breastmilk), he's still on oxygen. Please wait, I said!


Second thing the doctor's and I disagreed on was whether we could feed Jonah. They wanted to wait for him to have a bowel movement. I argued that we were NPO (no feedings) for so long before surgery due to it being pushed back several times that he had nothing to poop out! They wanted to put in a PICC line (a central IV threaded all the way to his heart) to feed him a stronger TPN solution. I, quite simply, disagreed. I questioned and probed, asked "what if's" but in the end, agreed to sign the release for the PICC line. They were the experts after all. They had poked him so many times for perifial IV lines that they ended up having to put the PICC line in his head!

On the other topic I had more success however. No 7th floor for Jonah yet. They continued to ask every day, but I held them off until Jonah was 5 days post surgery. At that point, they called one morning before I came in and told me an emergency had come up and they had needed Jonah's bed, so they moved him up to the 7th floor in the middle of the night. I didn't quite buy it, I think they moved him while I wasn't there to avoid the confrontation, but it didn't matter as by then I felt Jonah was much stronger. I still liked it better in the NICU, but I felt his condition was more stable so I didn't protest too strenuously as I had in the beginning.

Day 35 - Recovery

Back in the NICU for recovery. Because Jonah had had an epidural instead of the Fentynl, we had different protocol for weaning off the anesthesia. But this first day they let him rest. He didn't move much and retained water, and there was no chance of holding him, so we just sat and stared. We are so blessed that he is off the ventilator already, and never had to go on C-PAP this time, so we've just got the nasal cannula. His O2 saturations are all over the board and he seems to be breathing very rapidly sometimes, which is making me nervous, but they tell me this may be indicative of his discomfort and not what he'll be capable of in a few days.

Day 34 - Surgery Again

Over the last few days the surgical team has come to talk with me and we were told Thursday was the soonest they could get us in. Because Jonah isn't considered an emergency surgery, we have to wait for an opening on the surgical calendar (not popular with me but I do understand it). On top of that, there's a surgical conference that has many of the surgeons gone and the surgeon who completed Jonah's thoroscopic surgery last time (Dr. Lal) was on vacation with his family. So Dr. Aiken was going to be our surgeon this time. Which he actually was in the gallery watching Dr. Lal performing the last surgery, so he joked that he had probably jinxed us by saying that he had never seen a thoroscopic surgery so artfully done.

We were told the surgery was going to be at 10am so we were NPO (no feedings) all day. We didn't meet the surgeon himself before we went in for surgery, but we met the anestiologist. I had asked a lot of questions and of course we'd been through it before so I felt comfortable with how things were going to go and was less scared this time. I was still scared of course but couldn't wait for this to be behind us!

Because Jonah had already had the thoroscopic surgery and reherniated, they wanted to do open surgery this time. So Jonah would have a little bit longer recovery time and would have a large scar but we kind of expected that and it didn't surprise us. If that's what they needed to do to see clearly and repair the hernia properly, we supported it. Since we were on the 7th floor, the procedure was a bit different, the surgical team didn't come to the NICU to pick him up, we were delivered by a transport employee to the surgical holding area. We had to wait a long time because they kept delaying his surgery because more emergency surgeries came up. I started to get nervous that they wouldn't do it at all...we ended up being the very last person in the huge surgical waiting room that night.

Dr. Aiken met with us right before the surgery and told us Jonah was considerably more stable than the last time and he expected everything would go fine. He was hoping to actually take him off the ventilator right in the OR. Jonah was so angry after not being allowed to eat all day so it was tough to hear him crying and not be able to do anything. After we handed him off to the surgical assistant, we went to the waiting room. By now we knew the drill so we tried to read magazines and talk about happier things and eat. After a while we got an update that said things were going OK, then it was quite a bit longer before we heard they were done. Because there was literally no one left in the waiting room, Dr. Aiken just came out to talk to us there. He is a very talkative doctor so we chatted for quite a while about CDH and the Ladd's procedure (where they move the intestines around to try to approximate the way they should be aligned).

It was very late by now so we waited for Jonah to be taken back to the NICU and just peeked in on him before heading back to the Ronald McDonald House to sleep.

Day 31 - A not-so-welcome Birthday Gift

Today Jonah is one month old! He weighs 7lbs 14oz, up from the 6lbs 6oz he weighed when he was born, way to go Jonah! It's also Memorial Day, so my husband had off work and we planned on a nice birthday relaxing with Jonah and hopefully taking at least a few cute photos. After we visit with Jonah a bit my husband has convinced me to go over to his brother's for a Memorial Day Cookout. They planned it in Milwaukee so we wouldn't have to drive far and we would only be gone a few hours. Plus, it's good for us to get out of the hospital everyone keeps telling me.

Jonah was breathing pretty hard and retracting a bit. Intercostal retracting is where the area under their ribs pulls in with each breath. Jonah had always done it a little but the resident on duty thought it looked a bit more severe so he ordered another chest X-Ray and told us not to worry, it was only a precaution. I honestly didn't think much of it.

I had gotten in the habit of pumping in Jonah's room behind a curtain since the pumping "room" (cubby) in this wing was pretty tiny and public and there was only one so it was often busy. Plus, Jonah had a private room so other than doctors and nurses no one really came in. So I've got the curtain all around me when there is a knock on the door and I hear a half dozen people come in. They ask if they can speak with us, husband is holding Jonah and my mom is out there too and I'm in here so I can hear but not see. Sure, I say. And they tell us that Jonah has reherniated. They're very sorry....this happens sometimes....he'll need another surgery....this is why the breathing has gotten worse....glad they caught it....they'll have someone come talk to us....it was really just a blur. We had to start all over? We were going to do this again? We weren't almost done? No! Not fair! Nothing about this whole thing was fair but this was especially cruel! I alternated between being numb and I'm embarassed to say feeling very selfish. I wanted to take my baby home! I wanted to enjoy some of my maternity leave doing the things normal moms got to do! I wanted Jonah to be at home, in his own crib, in our house, with our dog! I write this not because I'm proud of the thoughts but because they were my honest thoughts at the time. Now having been so close to the other side of the world, where people don't get to bring home their babies at all, or at least not ever getting to live "normal" lives, makes me ashamed I was so selfish. But it is what I thought and therefore I share it so that you understand you're not alone in feeling the same way at times during your NICU stay. It's understandable...and once you're home for a while, then you'll realize it wasn't the end of the world. But at that moment, heaven forbid the person that tries to tell you that! Luckily no one was foolish enough to tell me that I was being selfish and I was able to discover it for myself after we got home and the world got back to normal.

Day 30 - Prepping for Jonah Coming Home

Well, it looks like we'll be headed home soon so my husband, mom and I spent a good part of the day getting everything ready at home. We washed all the bedding and clothes, decorated the nursery and did all the other things you'd normally do the last few weeks of pregnancy. Which considering Jonah was due June 2nd, was actually right on time ;-) I'm so excited!!!

Days 20-29 - Uneventful Uphill Battle

For the next week and a half Jonah continued on the same roller-coaster all NICU moms will tell you about. He did well some days and not well others. We were in a routine now, I went early to the hospital so I could be there for rounds, my husband went to work then came out afterwards with something fast-food for dinner and we stayed until we went back to the Ronald McDonald House and crashed. They started to use the "H" word (going Home). Jonah got to try out breastfeeding a bit too, we stuck to once a day so he didn't tire out but lactation was very happy with his latch and amounts. We were able to measure how much he drank by weighing him before and afterwards on this super-sensitive scale, which I got so comfortable with I could do myself and just let the nurse know how much he ate PO (by mouth) and gavaged (by feeding tube). We got pretty self-sufficient this week.

Jonah was circumcised this week in preparation for his leaving. The doctor that took care of it did most of the circumcisms for the hospital and told us her and her husband joked that she could probably walk down the street in Milwaukee and point out half the men on the street as ones she had done. She took quite a bit of pride in her work and had a great sense of humor to boot, thanks Dr. Ehlert!

She also asked me in all seriousness how I felt about Jonah going home on a bit of oxygen, he just did not want to give up that last half liter. And as much as 20 days ago I would have balked at the idea, now it sounded great! We focused on the feeding issue, if he could just get rid of the darn feeding tube we could go home, and we were getting there...when Jonah started needing a bit more oxygen instead of less. They had told me that he needed just the little 1/2 liter of room air, really just a "whiff" during the day while he was active, then it was all the time, then it went to 1 liter of oxygen instead of room air. Hhhmmm, doesn't this seem odd I kept asking? No no, the doctors assured me, it often happens and his lungs will eventually grow large enough where he won't need the oxygen any more. They started sending the at-home nurse coordinator and social worker over to discuss transitioning to home. We were happy and excited and scared.

It was during this time that we met another couple at the Ronald McDonald House who had a son with CDH. Children's Hospital had told us that they handled about 30 cases per year so we knew there was probably someone else in the hospital on this journey but of course you can't know who, so I was so happy we had run into them. Their son Elijiah was just a few weeks younger than Jonah and hadn't had his surgery yet. His mom was so strong, she had found out about his CDH when her husband was on a business trip. Then she found out there was another complication that required her to be in the hospital on oxygen for 9 weeks before delivering. And all of this was found not because of a routine ultrasound screening but because of one they got done not at a hospital but just to find out the gender since their OB/GYN did not perform routine ultrasounds unless there were complications. If they hadn't gone for that ultrasound, they wouldn't have been able to be prepared. And if the ultrasound tech, who was only looking for a gender and not for an anomalies, hadn't spotted it and called their doctor, there could have been a much different outcome. The Lord does work in miraculous ways! We are so blessed to have met them and still chat today.

Day 19 & 20 - Fun Firsts

OK, with the move on Monday and the gallbladder surgery checkup yesterday, I'm bound and determined to spend some time with my baby boy. Since we're on the 7th floor now, we've got an actual room to ourself, with a door and everything (it's the small joys). So I cuddle with Jonah and get some baby time in and feel much better by the weekend.



Jonah gets to have his first real bath! Before this they've all been sponge baths (which Jonah's dad and I also helped with) but this is so much more exciting! The nurse and I do it together so no photos since we were both concentrating on holding on to him and I was a bit nervous as it's just in a little wash basin way up high on a tiny table with wheels. Here's a photo from his second bath, grandma, mom, and dad were there this time around so we were able to get some photos. He seems to hate the bath part but love the hair washing...and yet now that we're home it seems to have moved the other way around, go figure!



Jonah also got to meet his first non-grandparent! Our best friends and Jonah's soon-to-be Godparents come to visit (though they didn't know they were Godparents till a month later :) So much fun to finally get to show off our little boy a bit. We still don't invite many people as we don't want to introduce too many germs, but the siblings and Godparents enjoy getting to meet and hold little Jonah. It's also interesting to see how new people are so tentative with all the wires and tubes, whereas we've gotten pretty much desensitived to it.

Day 18 - No time with Jonah, grrr!

I needed to go in for my one week follow up on my gallbladder surgery today, and with the drive time being almost 2 hours each way, I knew it would eat up the majority of the day. I also knew it would be pointless, but I'm a rule follower, and I appreciated the surgeon fitting me in, so I went. It took 7 minutes and consisted of looking at one of the four incisions and asking if I felt OK. Yep, I do, otherwise I would have let you know. K, we good?

I took the opportunity to pick up our mail and put away the last shower's presents in Jonah's room. And to see my flowers blooming, the daffodils and tulips are already done, but the serviceberry bush, peartree and crabapple we planted last year are blooming. I'm missing spring this year, I can't wait to show Jonah his new home. I can't believe he's never even seen the sky, or anything outside the hospital. That's sad! But of course he won't remember, I'm just being silly. Here's a picture of our "super baby", he's so strong and working so hard!

The tube you see in addition to the nasal cannula (the one that looks blue on the right side of his face) is his feeding tube. It's often referred to as an NG tube (N for nasal/nose), when he had one going into his mouth it was an OG tube (oral/mouth). This allows us to give him breastmilk without him having to work so hard to suck it from a bottle. We often start by offering him a bottle, but when he falls asleep and won't take the rest, we give it to him through the tube, referred to as Gavage feeding. The amount he took via mouth every day is referred to as his PO, so 40% means he took 40% of his daily breastmilk intake by mouth, the rest we gavaged. I asked what the PO stood for and was told "Per Os", it's Latin for "by mouth". NPO means you're not allowed to eat anything orally. One moment from the hospital I won't forget is that I was down in the cafeteria, eating my standard turkey sandwich and I saw a mom and her, maybe 8 year old son. And she was eating a sandwich and he reached for her pickle and she yelled (startled, not meanly), "No son, you're NPO"...that struck me as so sad, that an 8 year old should even know what NPO meant, that he should calmly accept it (as he did) as part of the treatment that he had to endure (and most likely not the worst part), just as he pulled his IV cart behind him around the cafeteria. The strength of these children is amazing! Especially those old enough to know what they're missing, to know that their childhood shouldn't be like this, and to still often have a maturity beyond their years, even though they shouldn't have to.

Day 17 - Booted out of the NICU!

Well, we were booted out of the NICU today...and that's a good thing...I think. They have 40 beds in the NICU at CHOW and when they start to get close to that number, they try to transfer the most stable patients to a kind of NICU graduate area on the 7th floor to make room for incoming kids. While it is fantastic that Jonah, the CDH baby, is the one that they say is most stable in the whole unit, it's terrifying too! The head of the NICU assures me its the "same level of care" (his exact words), and says that he never would have believed that the CDH kid would be the one they're moving. I personally would rather stay in the NICU, the nurses are fantastic and I know how everything works and I feel it's the highest level of care, but I understand the need to make room for critical cases and it appears Jonah is on his way out once we can get the oxygen weaned down and the feedings regular and bigger. Sooo...I pack up my ridiculously huge frozen milk stash and off we go to the 7th floor.

Except that its not the same level of care at all. Don't get me wrong, we met some excellent nurses on the 7th floor, but it's just not a NICU-level center. The nurses are assigned to more babies so therefore are just stretched thinner. Plus, many don't have any experience working with NICU babies so are more jumpy about monitor alarms. The doctor's aren't around except for during rounds in the morning, you can go hours without seeing a nurse unless an alarm goes off, and they don't do many of the things the same as in the NICU. I don't feel like I'm being unfair here, many of the parents of NICU-graduates I met felt the same way and the Care Coordinator at CHOW admitted they were working on improving and asked for my opinions. I'm simply stating here when I told her. I felt some of the problems could have been avoided by better communication and explanation. For instance, when Jonah used a bottle in the NICU, it was discarded, here they wanted me to wash it and reuse it, which is fine but when you've become NICU-ized into thinking that any germs could be deadly, its hard to adjust to just rinsing out a syringe for tube-feedings and setting it on a papertowel to use for the day (or two). When you're used to having everyone wash their hands before coming into the NICU and not having extra visitors around, it's hard to get used to tons of kids running around and not having strict guidelines (though the nurses always sanitized their hands before coming in the room!). When you're used to coming in for the day and hearing how the baby's night went from the nurse fairly immediately, it's hard to wait for 2 hours and finally hit the call button because you still haven't seen a single nurse stop in. When you're used to seeing de-sats (where the oxygen saturation level dips below 90%) from time to time and you've been told by respiratory that as long as the baby self-corrects, its nothing to be concerned about, but here they immediately switch from room air (21% oxygen) to 100% oxygen because they don't want to tire the baby and they "don't do blended oxygen", you feel like you're taking steps backwards instead of forwards. Not to mention they had no dedicated pumping room (the NICU had two), just a screened off area of the room with the refrigerator and bottles and stuff, where everyone came and went every few minutes. They didn't have a big deep freezer for the milk either, so I was sharing a fridge/freezer with 20 other mothers, all of us trying to fit ounces and ounces of milk into a tiny spot.

But enough of the complaining, the bottom line is that Jonah was getting better and we were looking forward to taking him home soon (which wasn't to be but I'll explain that later). The pros of being on the 7th floor were that it was a private room (with a door and everything) where I could spend some time with Jonah and only hear our own monitors beeping and have private time. It had our own TV, bathroom, even a couch for visitors to sit on (and pulled out to a bed if you really wanted to sleep there). More importantly, visitors were allowed! Yea! We didn't publicize it because we still felt that a limited visitor pool was best, but we had Jonah's Godparents and my husband's brothers come, along with someone from our church. This was their first time meeting Jonah and they enjoyed holding him and taking photos, he was already 2-1/2 weeks old and they were just meeting him!

Day 15 - Mother's Day

Since Jonah was due June 2nd, I didn't think I'd be a mother by this Mother's Day. The Ronald McDonald house put on a nice brunch and gave us all a flower and we also went out to dinner with AJ's family to celebrate. I didn't care for having my first mother's day in the NICU, but hopefully we'll go home soon, Jonah is doing great! He looks so much like a regular baby in his big boy crib and wearing regular clothes. And we get to try feeding him every three hours, he's up to almost half an ounce on good feedings. A friend of a friend who had twins that were in the NICU for a long time came to visit this week, she wanted to show me that they do actually get out of there and just lend her support. It was nice of her, but the day she came was the first day they were going to let us try to feed him, so we were a little anxious to visit and then get going again. Her twins are so cute though, and they were very premature and had a long uphill battle out of the NICU so it was uplifting to have her stop by.

Day 14 - Big Boy Crib

Jonah got to move out of his NICU warmer bed into a big boy crib! The warmer is used when the baby needs extra heat to maintain their body temperature or are unstable and have lots of wires. Since neither of those pertain to Jonah anymore, our nurse Jess (we LOVE Jess!) moved him into a big boy crib! We're still working on weaning down the oxygen needs. They work by lowering the flow of oxygen delivered to him and how much oxygen is in the mix. For instance, here I believe Jonah was on 2 liters at 30% oxygen. 21% is how much oxygen there is in room air, so you get an idea of how much assistance your baby is using. They usually start them out on high settings and then wean them down every few hours if their oxygen saturations are still good. A special team called respiratory does this while the baby is on the ventilator, but the nurse is more in charge once they move to a nasal cannula (at our hospital CHOW, this may be different at your hospital) with occasional guidance from pulmonary.

Day 11 - Get that CPAP Off of Me!

Jonah never really liked the CPAP, I'm told few newborns do. Jonah ended up disliking it so much and giving his night nurse so much trouble that she decided to try him on a high-flow nasal cannula. Jonah satted all right, his oxygen saturation stayed where they needed it to be so they left it there and we never needed the CPAP again, yea!!! A high flow nasal cannula works pretty much like a regular nasal cannula with the exception that it can deliver a higher flow of oxygen because the air is heated/humidified so it doesn't dry out the baby's lungs. The high-flow nasal cannula looked much nicer because it allows you to really see the baby's face so at this point that we started taking a ton of photos.



We also started to get to really feed Jonah at this point! I had been pumping the entire time, waiting for him to get strong enough to eat. We had to start out very small, offering 5mL (1/6 of one ounce) and often he wouldn't take all of it. He had the triple whammy of the CDH making him tired out and his lungs work too hard and being premature so not having ever really mastered the suck-swallow-breathe coordination plus now he hadn't eaten since he was born which makes it hard on babies to learn to eat. The NICU nurses were better at it than we were to begin with, so I took to letting them feed him more than I did, he seemed to get in my lap and snuggle up for a nap rather than eating. But we were on our way, yet one more step in the right direction!

Day 10 - Extibation & Gallbladder Surgery

Today is my gallbladder surgery. We traveled the hour and a half to my regular doctor's surgical center first thing in the morning. We leave at 5am since one of the rules at the Ronald McDonald house is that you can't spend any nights away from the House (since then they could hypothetically give your room to someone else). We got special permission to spend the following night at our house so that I could recover there for a bit before heading back to Milwaukee. They acted like it was a really big deal though and my husband was nervous all night. The surgery itself went fine and that night I actually didn't feel too terrible, probably partially from the Viocadin my mom made me fill and take one that night. The next day was pretty rough but after that it got pretty good pretty fast. I dumped 24 hours worth of milk, despite lactation telling me it was fine, they ironically gave me Fentynl as my anesthesia, the same as Jonah had had.






The bigger news was that Jonah was extibated! I did ask my dad to go and spend the day watching over Jonah, I felt better having regular phone updates from him and knowing that he'd call if anything changed. The nurses told me he watched him like a hawk, not even leaving for a lunch break, gosh dad, I didn't mean you had to be there that much! He called with the great news that they took him off the ventilator and tried at first to go right to a nasal cannula but ended up going back to CPAP. I just knew they would do it while we were away. The CPAP looks awful and there's actually two different kinds, the one in the photo above goes over their whole nose, then there's another one that has prongs that goes in their nose. They switch them off to give the skin a rest or if they tolerate one better than the other. Jonah hated it! I've been told most babies do so hopefully its a short step between the ventilator and the nasal cannula. Another step in the right direction Jonah!

Day 8 - Visitation Rules Suck!

Yes, I know that they protect our babies and I really wouldn't change them (really, I wouldn't) but it stinks that my husband's brothers don't even get to meet their first nephew. Or that they wouldn't even let our friends who drove us to the hospital into the NICU visiting room OUTSIDE the NICU because they had their 11 year old daughter with them. We had to walk the 20 minutes to get to the entrance to the parking ramp to have a visit, with no couches or anywhere to just have a chat. Turns out that guard was probably being a little too cautious and the rules should have let them come into the area outside the NICU but they didn't end up coming again, it was an hour drive for them and they just didn't want to risk it.

On the Jonah front, same old same old. They're starting to wean down his ventilator settings so that they can extubate him to a CPAP and eventually to a nasal cannula. He's behaving like a champ and I've become accustomed to glancing at his monitor and ventilator settings when I come in in the morning and knowing how it's going. I have gotten familiar with the equipment and it no longer scares me to see it all. I make a point of being there for rounds so I can hear the doctors explaining his progress to the students, which you might find useful as well but don't feel bad if you can't be, ask for updates every day from the nurses and any doctors you feel you want to talk to, I wasn't comfortable asking them to make a special trip so structured my day around being there for rounds and in retrospect it would have been completely acceptable to ask for an update, this is your baby and, if nothing else, you are paying for the doctor to follow your child. So speak up about any questions you have!

Day 7 - Addicted to Pain Meds

Today Jonah is one week old, we sang him Happy Birthday this morning really quietly in the NICU. He was still on the Fentynl so he didn't react but we hoped he heard us anyways. They took him off it shortly after and he spent the whole day twitching and restless. He's still really puffy and retaining a lot of water, but he's peeing good so we're hopeful it will start to go down soon. He did these horrible silent cries that only the parent of an intubated baby knows; they are crying but you can't (or can barely) hear them because of the ventilator tube. Not fun to watch and in the end the nurses end up giving him Adavan and morphine to calm him down. He's still on the billy lights but we changed two poopy diapers today, which they say helps with the jaundice, so we're hoping he'll be done with that soon, when he's on it they have to keep his eyes covered and you have to try not to look at the lights or cover up too much of him so we just can't wait for them to be gone.

We honestly don't have many photos to share during this timeframe because we didn't want to remember it, he was in pain and covered up and not moving, so we just didn't take out the camera much. Here's one we took when he got a break from the billy lights (the white circle on his temple is velcro where they attach the sunglasses for the light therapy). You can see the little "frog" in the upper left, they used that for positioning him different ways so his head didn't get a flat spot. You can see the blue cloth on the bottom they brought around to add some color to the room. They did this several times while we were there and it was really nice, a stuffed animal once, a blanket another time and they let us use several outfits that we returned when we left.

Day 6 - Ungrateful?

Much of the same today, watching and waiting. They lowered the Fentynl so he would twitch an arm or leg occasionally, nothing much. I went to have a consult on my gallbladder. I decided it was better to take it out as soon as possible so that I was 100% better when Jonah came home, which I was convinced was going to be sooner than the 6-8 weeks I had heard was typical for CDH kids (not that there's any typical, some are a lot shorter and some a lot longer).

We moved to the Ronald McDonald House today as well, which I had a really bad attitude about and then felt bad for being so ungrateful. What was my problem, it was right across the street and a very affordable option. The people were nice and it was clean and well run. My problem was partially that it was a bit further away from Jonah. But I think my bigger problem was that we weren't supposed to be there! That place was for sick kids and families of sick kids. My baby was supposed to be well and going home with us. I didn't want to sleep in two twin beds and hear the people in the next room and share a kitchen with a dozen other families. I didn't want to have to field polite "how's it going" questions when we all know that it's often not going well. I didn't want to have to pump in our room in the dark so I didn't wake my husband up and sneak out there in the middle of the night to put my milk in a communal refrigerator! I'd like to say that I got over this and became the grateful and magnanimous person that I wish I could be, but I didn't. As much as I will forever be grateful to the RMcD House for letting us stay, and will donate generously so that others can do the same, I hated that we had to be there, and I post this so that if you feel the same you know you're not alone, even if it does make me sound awful. I honestly do wish it wasn't this way, and I did realize that it could have been a lot worse, but I tried to spend as little time there as possible and celebrated the day we moved out!