Sebastian's Make A Wish Trip to Disney

My thoughts are with you guys. I hope they find the cause. I see you are nursing. Have you tried an elimination diet? If not, I'd highly recommend to see if you can find the culprit. Allergies don't always show up on the tests. *hugs*

I'll second this! My son turned out to be allergic to dairy. Even though he was strictly breastfeeding, the dairy that I ate was enough to make him vomit. It started off as just spitting up a little like a normal baby, but progressed to across the room projectile vomiting! :sad1: I eliminated dairy from my diet and we saw immediate improvement! I also worked with a lactation consultant to make sure he was actually eating, not just sucking.

Hugs to you and your family. I'll be thinking of you all and hoping things get better soon! :grouphug:
 
My heart is aching for you all. Brings back memories of our first Disney trip when Noah was hospitalized with RSV the week before we left. He was discharged 2 days before, and we somehow managed to make it there. But talk about stress!!
Lots of prayers coming your way. Praying an answer can be found quickly and that this will not delay your wish trip!!

Gain weight, little Savannah!!princess:

Nichole
 
Oh Amber. I cried reading your post. Sending many hugs and prayers to you all.
 
Our day nurse today yesterday was Kim. She was great! I’ve come to the conclusion that your nurse really makes a difference in how your day and your spirits go at the hospital.

Kim happened to see Savannah’s projectile spit up in the morning and thought that it was definitely reflux. Brian and I took some pictures our first night of Savannah’s spit-up because we keep getting asked to describe it. A picture just seemed easier.

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Tuesday morning Savannah weighed 9 pounds 11 ounces--up four ounces from Monday's hospital scale weight of 9.7. Nurse Kim said that Wednesday's weight would be a better comparison because when Savannah’s weight was done on Monday she didn’t have the IV tubing and arm splint. Still I’d like to think she’s on the upswing.

Dr. Pat told us that all of Savannah’s blood work came back normal. No metabolic disorders were detected.

Dr. Pat said that Nurse Kim told her about the spitting up she saw and we showed Dr. Pat the pictures we took. The diagnosis that Savannah keeps fitting the bill for is Gastroesophageal Reflux Disease (GERD)–the extreme version of GER..I gues they just add the "disease" part. In the “extreme” cases infants lose weight, can have wheezing and even sound hoarse just like Savannah.

Dr. Pat wants to try fortifying Savannah’s milk to see if it will help her Esophageal Sphincter muscle keep the food down. The Dietician has put her on a ratio of 2 ounces milk to ½ teaspoon of rice cereal.

Yesterday when Dr. Zimmer and then the Nurse Practitioner were asking me if Savannah nurses “vigorously” I told them, “No, she really does not.” Since she has been congested she’s been having a hard time with breathing let alone eating.

As she has gotten progressively sicker her nursing became less strong. I have noticed without milk flowing it’s more painful for me since it is essentially skin being pressed against skin and pulled…OUCH!

Even though I know she latches well I feel like she doesn’t hoover down the milk like she used to. I wanted someone to confirm or abate my fear that she has not been suckling productively.

So before Dr. Pat went home last night I ran down and found her at the nurses station and asked to have a lactation consultant come and evaluate Savannah today.

A Lactation Consultant named Megan came to see us late morning. First she weighed Savannah and then I nursed her on the left side. Then Megan weighed her and determined she took a mere 20 CCs –less than an ounce. Next I fed her on the right--my historically best producing side. She was weighed again. Her whole intake amounted to 1.5 ounces. At her age she should be drinking around 4 ounces per feeding.

Megan kept telling me that it wasn’t my “fault”—if Savannah wasn’t sucking the milk out, my breasts were not going to keep up their milk production. Even so, I feel guilt ridden that I’m not making the needed four ounces.

I remember brining Savannah in to the Lactation Center when she was a couple weeks old and her being weighed before and after a feeding. At that time she took in nearly 3 ounces and I was able to pump an additional bottle out of each breast.

It breaks my heart that three and half months later she’s taking in half of what she did as a newborn.

Megan also got me set up with the Medela Symphony pump I have to take home. I used it on full suction for twenty minutes on both breasts and only expressed what amounted to one additional ounce when the two bottles were combined.

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We mixed this with a half teaspoon of cereal and she easily took it from a bottle. The nursing seems to be too much “work” for her right now.

Megan also asked me if I felt my milk let down. I really don’t anymore but I attributed this to time. In the past the longer I nursed the less of that burning sensation I felt as the milk ducts filled and released.

I’m glad that I asked for the Lactation Consultant to come. It was a real eye opener that not only is Savannah losing calories from refluxing but she isn’t even taking in as much as she should to begin with. Combined it’s not a wonder she’s losing weight.

After Megan left Dr. Pat gave me a little lecture about supplementing. She told me to give her some formula mixed with the cereal after the breast milk. She said that at this point every ounce of milk counts.

I’m trying to emotionally prep myself that bottle feeding may be what is best for little Savannah. It’s a big deal to me because I’m a big proponent of breast feeding and have always enjoyed the bond that it has afforded me with my kids. I nursed Sebastian until he self weaned at 9 months and Siennah until 11 months.

I’ve been giving myself a little pep talk that four months of nursing is better than none at all…I’m trying not to think of it as a failure.

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Tuesday evening I pumped again for twenty minutes. I was only able to get an ounce from each breast. I mixed in the rice cereal and fed it to Savannah. She drank it in no time flat.

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My mother-in-law was impressed with how well she does with the bottle. Honestly, if we are to continue I hope that she doesn’t become too accustomed to the ease of the bottle nipple. Otherwise I think it is going to be really hard to establish a good supply demand relationship again.

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An hour later she was fussing and rooting. I didn’t think my breasts were up for another round of suctioning just yet so I went straight to the Enfamil ready-to-feed 2 ounce bottle. She sucked the whole thing down while happily gazing up at me. What matters are those precious calories.

Savannah had another course of Rocephine today and went back on Prevacid. The Prevacid is stronger than the Zantac she was being given via IV. So far I think the Prevacid, which stops the production of stomach acid instead of merely “blocking” it, works the best. She’s being given the Prevacid as a syrup. I requested that our prescription be for a syrup as well. It is so much easier than the ridiculousness that was the soluable tablets!
 

While it has been really nice to spend some time with just my sweet Savannah, I really miss Sebastian and Siennah. My in-laws brought them up to the hospital last night and we had pizza. Lucia also came to visit. It was so nice to have some company. It is so boring and sad here!

My in-laws also brought the Big Give packages that have been collecting on our door step. I was so glad that we were able to open these up together and I got to see the kid's delight and excitement!

It was hard though getting Brian and my FIL to slow down opening them so I could make sure that I was getting enough pictures to post on here. As it went I'm sure I did not. Hopefully I will get many more shots at Disney!!

Jeanne (Jham) sent ADORABLE Christmas outfits for Siennah and Savannah and matching shirts for Brian and I. Won't we look festive at Mickey's Very Merry Christmas Party?!

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My friend Lucia is holding Savannah. She is the one who has also been sewing stuff for us for the trip. I could not put the onesie on Savannah because of her IV but she looked darling in the skirt.

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The girl's dresses came with sweet little matching fur cuffs. I need to go back and take a picture of them. They were so sweet.

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In the box from Jeanne was a Pirates of the Carribean hat that Sebastian thought was SUPER cool!

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Jessica (Jessica52877) made a MATCHING Christmas outfit for Sebastian. He was in LOVE with them. They fit him perfectly!!!

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Siennah recieved an adorable Winnie the Pooh dress from Melissa (mommyof3princess). She henceforth would not take it off!

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The kids got personalized Autograph books from Kim (Kimmylaj). They were so cute! I thought it was so sweet that her kids helped her make them. The character pages were grouped together by our touring plans and everyting! So incredibly thoughtful!

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Glenda (gcast1) sent photo albums!!! I'm super excited about these! Sebastian LOVED that his had Buzz and Siennah went CRAZY for the Princesses on her's!

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The kids also got bucket hats from Kathy (KJBROWN). They are soooo sweet! I just love them!

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As I read through the beauftiful cards, letters and pictures that came with all these amazing gifts tears just poured out of me. I can't begin to tell you how much all this wonderful stuff brightened our world. I THANK YOU from the bottom of my heart. We are forever grateful for your extraordinary kindess and generosity!

I can't wait to get to go home and pack everything! Dr. Pat says that if Savannah can gain a little weight then we can go home for Thanksgiving! We have so very much to be thankful for!
 
Amber, I am still thinking of you. I know how you feel about the nursing. If you have a minute, please research the connection between GERD and cow's milk! There is a huge connection. If you want to continue bf, which it sounds like you do, eliminate it from your diet. The meds with help as well. Also, ask the lactation consultant about doing a SNS system. Basically they attach a tube to your breast that is connected to the formula but she "nurses" and continues to get the supplements she needs right now. My thoughts are with you right now. I have been there, done that with Michael. *hugs*

I love the packages from the Big Give. They are some awesome folks!
 
Beautiful pictures!! What could be better than Big Give bonanza to brighten up a dreary couple of Days in Hospital?:banana: :banana: :banana:

It seems like Savannah is on the mend, that makes my heart sing:yay: :yay:

Becca was a preemie and was gastro tube fed for a while (she had no idea how to suck) I pumped and pumped and pumped to store it up and to push down her tube. Alas, my breasts hated the pump, I went from free-flowing everywhere to not even an ounce over the space of 8 days. So I can quite understand your frustration when pumping for so long and getting virtually nothing out.
My midwife said to just pump for longer, I asked how much longer than 4 hours should I pump for 10ml of breast milk?:laughing:
 
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Amber, I'm so glad you got the Big Give packages to brighten your day!!!! :hug:

When Lydia was in the NICU right after she was born, they had me pump for her too. NOTHING would come out! I hated that stupid machine! It made me feel very inadequate (even though I knew from nursing my other two that my milk never came in that early anyway!). When Lydia was 4 months, I pumped some bottles for our drive to Florida. That was with a manual pump, which I liked better than the machine. It got easier the more I did it. The biggest thing was to actually try to relax. Which, is very hard to do when you are worried about your baby and worried that you won't be able to pump. But, if you can find a nice quiet relaxing place, it will go better. :hug:

When Heather was hospitalized when Sawyer was 5 weeks old, we had to give him a bottle for a week (or more?) but when she could nurse him again, he did fine.


:hug:
 
I love all the gifts and I am glad they are able to bring a bright spot to the hospitalization. I hope you guys get "sprung" soon! Hugs!
 
I'm still thinking of you Amber. Bottlefeeding is ok, I hear you about the bond, but I couldn't breastfeed my first baby for very long because he was ginormous and needed so much more than I produced. It was a very long 3 months and he was so much better once he was on formula. Every one is different. It will be ok though.

Your Savannah is just a beautiful little girl (all the kids are gorgeous)! Keeping you in our prayers over Thanksgiving.
 
Oh look at all those cuties. You have beautiful little ones. I am so very sorry you have to be in the hospital. I do hope she get better not only enough to leave the hospital but better period.

I sobbed even more when I saw Siennah wearing the pixiedust: I sent her I was so happy it fit and she liked it. I hope your family are all well enough to still go on your trip like planned. I will pray for you things turn out ok.:grouphug:
 
The kids also got bucket hats from Kathy (KJBROWN). They are soooo sweet! I just love them!

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Yeah! Glad you received them and even more glad they fit! :)

Your little one might surprise you! My DS had to have a bottle right around the same time because he wasn't latching on right. After he nursed I wound up pumping an ounce of blood! :scared1: Anyway, he had to have a bottle for a little while there, but he went right back to nursing and we got him all worked out!

Even if she doesn't go back to nursing, YOU ARE DOING WHAT IS BEST FOR YOUR CHILD, so don't doubt yourself for a moment! :hug:

Hope you are all on your way home ASAP!!!
 
Amber, I am still thinking of you. I know how you feel about the nursing. If you have a minute, please research the connection between GERD and cow's milk! There is a huge connection. If you want to continue bf, which it sounds like you do, eliminate it from your diet. The meds with help as well. Also, ask the lactation consultant about doing a SNS system. Basically they attach a tube to your breast that is connected to the formula but she "nurses" and continues to get the supplements she needs right now. My thoughts are with you right now. I have been there, done that with Michael. *hugs*

I love the packages from the Big Give. They are some awesome folks!

And honestly soy milk is not bad! Kinda good even! :confused3


I'm so glad you got Big Give packages at the hospital! The girls look adorable in their outfits. And I'm glad Sebastian liked his hat. Those bucket hats are so cute. Love the pooh bear dress and Jessica is the best at making those overalls! Sebastian looks very handsome. I'm glad Savannah is on the road to gaining and hope she keeps it up! I know how you feel about breastfeeding. With my first I had to go back to work part time from the time she was about 2 months until she was about 6 months so on my one break I had to pump and It was frustrating. She got enough milk nursing, but when I pumped I felt like I hardly got anything. It probably had a little to do with stress since I had so little time to do it. Your are trying your best and the important thing is getting that baby to gain weight!
 
Amber - WOW! WOW! WOW! You needed this big give pick me up! :) You've had a rough few days and I feel things are looking up for ya'll. I mean, how couldn't they after amazing packages like that? Those clothes are adorable and I LOVE LOVE LOVE seeing your kiddos smile!!! You're doing great. Don't stress about the BF as it'll have a negative effect. I know how you feel and it's tough. We're all praying for you!!
 
Amber, I am glad to hear that Savannah is eating and your spirits sound good.

All the outfits and other things are darling! It was almost like a little party at the hospital! So glad the overalls fit and that he likes them! I hope you'll get to go home soon and that Savannah gains some more weight.
 
YAY!!! Dr. Pat is letting us go home for Thanksgiving!

Savannah is still 9 pounds 11 ounces--same as yesterday the "base-line."

Since Savannah didn't gain but she DIDN'T LOSE we are going to be eating our turkey with our family! There are a LOT of discharges today and we are going to be one of them! Wohooo!

Dr. Pat says we have to take Savannah in on Friday and if she continues to be "failure to thrive" (what a horrible label BTW) then she'll re-admit her.

I'm going to fill myself with milk-making stuffing and pass it along to Savannah so that doesn't happen. ;)

I can't wait to sleep in my own bed. I am beyond exhausted. The guy who was our technician last night insisted on vitals all night that woke Savannah up..and kept me from ever getting to fall asleep. Do you really need at rectal temp at 1:00 a.m. from a sleeping baby?! Ugh!

We're waiting for lactation to come and do the pump rental and talk about a supplemental feeding system. Then it's sianara Hospital!
 

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